In this new article I sound the alarm on an ominous shift in how psychosis is diagnosed, that will use a system of bio-marker tests to label people in extreme states as being in a psychosis biotype group.
In this new article I sound the alarm on an ominous shift in how psychosis is diagnosed, that will use a system of bio-marker tests to label people in extreme states as being in a psychosis biotype group.
This entry first appeared at Mad In America on November 10, 2015.
I felt a chill go through my body when I read that the FDA has agreed to review for possible approval in early 2016 a new form of the drug Abilify that contains a microchip sensor capable of sending a message that indicates the exact time a tablet dissolves in the stomach. The message is recorded by a skin patch – along with data such as the person’s body angle and activity patterns – and, according to a press release from Proteus Digital Health, the developer of the device, “this information is recorded and relayed to patients on a mobile phone or other Bluetooth-enabled device, and only with their consent, to their physician and/or their caregivers.”
The Japanese drug giant Otsuka teamed up with Proteus Digital Health in 2012 to create this potentially profitable new “chip in a pill” just as its patent on Abilify – at $6.9 billion the #1 most profitable drug in the U.S. in 2013 – was set to expire in 2014, leaving one of Otsuka’s most valuable markets vulnerable to generics. It is especially ominous to me that our government is teetering toward passing the Murphy Bill, which would make forced in-home treatment the law of the land, at the same time it is lurching toward putting such an Orwellian device in the hands of a pharmaceutical company, courts, and families.
According to the Washington Examiner:
”The new smart drug could be particularly useful for ensuring the mentally ill continue taking their medications, not just by giving doctors a way to monitor their behavior, but courts as well…all but five states have court-ordered programs where a judge can mandate that offenders with severe mental illness stick with a treatment program as a condition of remaining in the community.”
As one Facebook commenter noted; putting a pill in your mouth and swallowing it, knowing it’s going to transmit a message to prove one is submissive and compliant, is beyond Orwellian – it feels fascistic. I agree. The social contract draws an invisible line that must be guarded against forces in a society that, driven by fears, fantasies of benevolence, or by simple greed, and are blind and deaf to the cries of its citizens as their bodily and personal integrity are ground into powder along with the preparations they are compelled to take in the specious name of “health” and “safety.”
Sometimes, radicalizing people politically takes a really callous, stupid, and dangerous threat to people’s liberty. This is one of those times.
The Washington Examiner article cites recent research that shows 74% of people who are started on antipsychotic medications stop taking them within 18 months. That’s the justification offered for a psych drug that monitors its own use.
“These individuals already have a history of problems due to their unwillingness or inability to voluntarily comply with treatment … this could be an important advance for them that would help them maintain treatment compliance.”
— D.J. Jaffe of the Mental Illness Policy Org.
Think about it: faced with the overwhelming 74% failure of a pharmaceutical intervention, why is the core issue deemed to be compliance rather than efficacy, and consumers’ safety & satisfaction? And why are we “gearing up” to ensure compliance in particular for a drug that even the FDA admits has an unknown mechanism of action?
What other medical specialty would blame its patients for so overwhelmingly choosing not to take the medications that have been prescribed to them? For a field that has taken on the charge of controlling and regulating social deviance, the ethical boundaries that the FDA should be protecting are blurred by the growing perception that people who are DSM-diagnosed are potential risks to society, despite overwhelming risk to the contrary; that a DSM diagnoses should be a signal that a person needs and deserves our protection.
Only a worldview that embraces the disease and deviance model of human emotional suffering would dare to suggest putting a sensor in a psychoactive substance to monitor and enforce its ingestion by an otherwise free citizen.
I believe that at some very basic level empathy seems to have failed in a society that sees the need to develop a sensor-equipped psychoactive substance. The blasé emphasis on prioritizing prescription compliance, without considering the profound subjective experience – to anyone, let alone a person in crisis – of having a digitalized foreign object inserted deep inside, an object that is in turn sending messages to an invisible outside presence. This oversight amounts to a vertiginous stumble forward in our society’s failure to muster empathy and compassion for its members, instead delivering them, in the form of a now-literally captive market, to the drug makers.
I’ve been seeing clients in therapy for over 35 years, and at no point can I imagine sitting a few feet away from a person in distress and suggest to them that they should consider having a device inside them that would let me know every day at a distance their most intimate experiences – let alone when they digest something, lie down, or when they have taken their meds. I couldn’t do it. It would feel ghoulish and perverse.
And I don’t want to be a part of a society that would do. Even – and perhaps especially – if it were being done “in my name.”
There is an aura of something shameful, a violation of a basic human right to privacy and bodily boundaries that is being ignored in the pursuit of this new digital monitoring of psychiatric medication. The shame is that, with a pill that records the moment of its absorption into our bodies, we are seeing the realization of a long-sought ideal of totalitarian governments; to cross the blood-brain barrier, gaining access to the very seat of our autonomy, and of our souls. With this, Otsuka could fairly revamp its marketing for Abilify by renaming it “Dis-Abilify,” without so much as risking – and potentially augmenting, in a society that seems to be exuberantly embracing an Orwellian ideal – its market share.
This is a time, if there ever was one, for citizens to act, and to act decisively; before the ability to make decisions, let alone act on them, is excised from our bodies completely by the next wave of pharma development.
Of course some will object to my characterization of those who developed this seeming well-meaning medical breakthrough as lacking a moral compass. But I have already heard the cries of outrage and fear from many of those for whom this Orwellian medicine is intended.
I’ll end here with an ever-more apt quote from C.S. Lewis –
“Of all tyrannies, a tyranny sincerely exercised for the good of its victims, may be the most oppressive.”
A brief new article here about mental health providers who believe they never could suffer in the ways many of the people they serve experience, and how that belief limits the provider’s capacity for empathy and compassion.
This entry first appeared at Mad in America on December 12, 2013.
When Richard Price was a young man, he experienced extreme states for which he was labeled schizophrenic and forcibly ‘treated’ with psychiatric medications, ECT, and insulin shock. He suffered from residual effects from this for the rest of his life. In 1962, Price and Michael Murphy founded the Esalen Institute on the Big Sur coast of Northern California. From its beginning, Esalen worked to create sanctuary for people who, like Price, experienced extreme states. “Esalen was Price’s revenge on the mental hospital!” says Murphy.
Both at the institute itself and through the creation of projects like the rigorously designed, NIMH-funded Agnews Project research, Esalen helped to create the contemporary model of madness sanctuary. Agnews, which yet stands as the largest randomly-assigned, double-blind study on first episode psychosis, showed a 70 percent lower re-hospitalization rate advantage from providing a med-free environment for people in initial extreme states; a result which provided impetus and support for John Weir Perry’s med-free sanctuary Diabasis House, and the creation of the I-Ward sanctuary that I served at and wrote about here on MIA in “Remembering a Medication-Free Madness Sanctuary”.
Dick Price also wanted Esalen to be the kind of outside-the-box think tank that could fundamentally re-vision the experience of madness away from the medical model vision. Price realized the applied practice of the medical model belief system was the cause of the greatest trauma in his life. Price said about his own experience that “The so-called ‘psychosis’ was an attempt towards spontaneous healing, and it was a movement towards health, not a movement towards disease.” He believed his experience of madness was not pathological but was full of meaning and was transformative, even perhaps touched with mystical power. He saw Esalen as a refuge for people in extreme states, “A space where it’s possible to live through experience rather than having it blotted out, a place where there aren’t the same negative self-definitions of someone going through this type of experience.”
In addition to Price’s commitment that Esalen provide refuge for those in extreme states, Esalen’s broader liberating influence on world culture would prove to be enormous, as pioneers in philosophy and psychology made it the birthplace and epicenter of the human potential movement. (Sascha Dubrul has written a great article here on MIA about the lasting relevance of the human potential movement for current activism.) The young and gifted Price and Murphy attracted figures like Alduous Huxley, Alan Watts, and Abraham Maslow, who helped put Esalen on the map with week-long and even month-long gatherings for re-visioning madness. Ongoing symposia with names like “The Value of Psychotic Experience” went on for the whole summer of 1968! Gregory Bateson, Murphy and Price, Alan Watts, RD Laing, Erik Erikson, Fritz Perls, John Weir Perry, Claudio Naranjo, Virginia Satir, Julian Silverman, Alan Ginsberg, Michael Harner, Joan Halifax, Stan Groff, and many others all contributed to a growing understanding of extreme states that continues to evolve, as it certainly always must. They saw a neglected possibility for humankind, rooted in a philosophy that has always served to bring a dimension of the sacred and numinous into view.
That ancient but always emerging mythic vision serves as a counterweight to the objectifying, pathologizing and materialistic world view that I believe makes the tragically narrow vision of psychiatry possible. Esalen’s role in altering the views and approaches to madness, or extreme states, continues to this day.
Last month, following in the tradition of passionately focused Esalen conferences, I organized a week-long invitation-only gathering there; “Alternative Views and Approaches to Psychosis.” This conference was preceded in 2011 and 2012 by a workshop and then a conference on alternative approaches to extreme states that began a revival of this aspect of Price’s work, one that had been dormant at Esalen since his death in 1985, when he was struck by a boulder while tending to the Esalen grounds following a flood.
This year, the Esalen conference was attended by 40 people involved in one way or another in the mental health revolution that is daily chronicled here on Madinamerica. People with lived experience brought their invaluable perspective to a gathering that included peer counselors, psychiatrists, therapists, authors, film makers, researchers, mental health services administrators and family members. A great many of the 40 people who gathered felt a sense of urgency to come up with collaborative, strategic ways to unite against the ever-growing human rights abuses of forced treatment. Those human rights abuses are being justified more and more in the name of protecting society from the suspected danger of people who have been given a psychiatric label. That public demonizing of those of us with lived experience of extreme states is being fueled by wide-scale fear mongering and draconian laws that threaten all who experience extreme states.
A number of us at the Esalen gathering committed to work together to fight human rights oppression on many fronts, via media, public education, legal campaigns, and expanding on existing – and developing new – humane, alternative supports for those in extreme states.
Dick Price was a psychiatric survivor whose compassion still touches us now. I know I wouldn’t be writing here on MIA if not for him, because the I-Ward medication free extreme state sanctuary I went to work at in 1980 would never have existed without the Agnews research Price made happen. John Perry’s Diabasis House – that I did my doctoral research on – never would have existed either.
So, thank you Richard Price, for fatefully touching my life, but so much more for helping so many people in extreme states receive the love you were denied in your hour of need, and escape the soul-shrinking diminishment of self-worth, and the hopelessness that a psychiatric diagnosis can inflict. Esalen lives on as an example of what can happen – for individuals and for society at large – when we respond to the extremes that sometimes come with human life not with fear and control but with receptivity and encouragement. There’s no knowing – ahead of time, at least – how much accrues to each of us and to society at large when we learn to listen to the voices – weak, tenuous, or frightening as they may sometimes be – of people who are struggling with the process of coming-to-be in a world that often silences or eliminates them before they have a chance. Dick Price’s voice was silenced early but lives on in the place in which he came to live and die; a memory and evidence of what can happen when the best of mind, body, spirit and community are given a chance to come together.
This entry first appeared at Mad in America on October 29, 2013.
In Butte County, California, Law Enforcement and NAMI have recently partnered to provide identification cards for people in the mental health system. The cards reveal the person’s psychiatric diagnosis and current medication prescriptions. The voluntary photo ID cards are called ‘White Cards.’
The goal is to help law enforcement have on-the-spot psychiatric information, about someone they are questioning. The local NAMI president explained the ID cards also include a person’s triggers, like . . . “If you get too close, I get violent.”
This White Card project may be well-intentioned, but it makes me very uncomfortable. I believe it is a form of psychiatric profiling that could be adopted by law enforcement around the United States, with the powerful political backing of NAMI, and the tacit if not public support of psychiatry.
The operative stigmatizing equation appears to be “mental patient” = unacceptable danger to others. Will police believe that “good,” compliant and NAMI-aligned “mental patients,” who will be able to show the police a White Card with their diagnosis and prescribed medications, make up a lower risk group, than people without a White Card, who reject being identified by a diagnosis, and may not be taking meds?
Will people without White Cards be seen as potentially more dangerous by the police?
And won’t the police eventually want a data base of all White Card holders to cross check against when someone hands them a White Card, creating a kind of watch list?
I can imagine staff at psychiatric hospitals pressuring confined people, to sign up for a White Card as a new and added criterion for their discharge.
I can imagine staff at mental health clinics urging people who are court-ordered to receive forced treatment in the community to also get a White Card.
The cards can be obtained at a NAMI office, or at the police station.
Supplying people with “mental patient” identification cards, conveys the implication that something is proven, that predicts a person’s behavior about potential violence, whereas the state of the scientific research, cannot support such an ID card project aimed at violence prevention. It ends up being psychiatric profiling – a whole class of people becomes the socially identified scapegoat, based on the fears and projections of others. Once again we see the psychiatric diagnosis process serving as a public degradation ceremony, that effectively strips personal identity away, to legitimize the enforcement of the regulation of deviance in our communities.
This White Card project is happening against the backdrop of over 40 states oppressing people with forced, in home treatment laws.
Draconian measures imprisoning and forcibly medicating and giving ECT to people, are challenged now by the UN, which equates forced psychiatric treatment with torture, as Tina Minkowitz has so well documented here on Madinamerica.
This joint Law Enforcement/NAMI White Card project looks to be another ominous development to me.
This entry first appeared at Mad in America on September 7, 2013.
There is liberating power in naming something for what it really is. It is a freeing act of defiance. The psychiatric diagnosis process is a degradation ceremony. Shock treatment is a human rights abuse, water boarding is torture, etc.
The functionaries assigned by society to control deviance have an enhanced status. In the case of psychiatry, they have even been entrusted by society to define deviance in their echo-chamber diagnostic manual.
Whether they personally experience the act of diagnosing/degrading another as elevating them during the diagnostic ritual or not, they serve as deviance police for society and are very well rewarded for doing that.
But some of us defiantly say no. No more diagnosing/identity robbing, no more taking away our identities with the blessing of society.
Sociologist Harold Garfinkel, in his landmark article “Conditions For a Successful Degradation Ceremony” wrote that “Degradation ceremonies are those concerned with the alteration of total identities.”
I first read this liberating article in the 1970′s as I was trying to piece together my life after a lengthy experience of madness. It validated my gut-level belief that my avoidance of psychiatric treatment, no matter how much I was suffering, was necessary to avoid having my identity stripped from me and a new identity of life-long mental patient embedded in my psyche.
Garfinkel was greatly influenced by Erving Goffman, the father of Labeling Theory. Goffmans’s book Asylums: Essays on the Social Situation of Mental Patients and Other Inmates looked at how society deals with deviance by codifying and enforcing social roles and identities.
But Garfinkel’s work on what he called “Status Degradation Ceremonies,” is very appropriately geared to help uncover more understanding about the impact of the process of psychiatric diagnosis.
Because I believe that undergoing a psychiatric diagnosis process has an uncanny and sinister-feeling quality to it that comes from a deeper aversion than just forming a rational objection to being labeled and subjected to a DSM-5 category.
I think our deep aversion to being diagnosed comes from a fundamental reality; that psychiatry has been invested with the same power to perform identity degradation that has always resided in designated specialists. “It will be treated here as axiomatic that there is no society whose social structure does not provide in its routine features, the conditions of identity degradation,” says Garfinkel.
When we are diagnosed, we feel the weight of an ancient social sanction of identity degradation, one that has taken many forms from our tribal beginnings, but is still life-transforming in its power – even when carried out now with the best intentions, and for our perceived benefit by mental health professionals.
Garfinkel points to this almost archetypal human experience when he writes, “Just as the structural conditions of shame are universal to all societies, by the very fact of their being organized, so the structural conditions of status degradation are universal to all societies.”
The crushing loss of faith in a happy future is profoundly damaging because of the loss of our personal sovereign identity, a rupture occurs in the personal continuity of who we were before we were diagnosed, with who we are said to now be.
Garfinkel asks, “What program of communicative tactics will get the work of status degradation done?” A ceremony is required that will secure the product of successful degradation work to be a changed total identity.
A professionally rendered DSM-5 Axis 1 diagnosis always rests on the belief that a bio-genetic disease process has been established to exist. The diagnosed person is informed that their illness should be of primary concern indefinitely, if not for the rest of their lives. From that fateful day of diagnosis forward, the person shall now be officially identified as someone with a major mental illness.
For Garfinkel, the person undergoing a status degradation process also “must be placed outside, must be made strange,” and must become “literally a new and different person. The former identity stands as accidental; the new identity is the ‘basic reality.’” What the person is now is what they were “all along.”
But I learned there is a way out of this trap. There is good news. As so many readers of Madinamerica.com can testify, we can “render” all degradation ceremonies “useless.”
When I read the last line of Garfinkel’s article almost 40 years ago, it felt like a jail break to me, because it said I could – with a very simple move – render useless any attempt to pigeon-hole me and take away my identity via a psychiatric diagnosis.
I could simply choose to not acknowledge or honor the socially-sanctioned power of psychiatry to perform a degradation ceremony on me.
Because unless we volunteer to give that power to another person or our society, they can’t wield it.
Oh yes, they can diagnose us, lock us up and do all the human rights abuses they do that they call treatment, but if we refuse to give away our identity, no one can take it from us.
If the social institution of psychiatry is tasked by our society to regulate deviance via the identity degradation ceremony of diagnosis and oppressive “treatments” that are often human rights abuses, then how can such a dysfunctional, dystopian society find its way out of such a spiritually and morally bankrupt cultural dead end?
Can Garfinkel’s baleful pronouncement that all societies inherently are set up to have identity degradation ceremonies take place be flipped, and we claim that our society can and must also be a constant source of an opposite kind of ceremony that we pursue doing status elevation ceremonies, identity valuation ceremonies?
As individuals, we can refuse to give psychiatry the credence or moral authority to perform a successful identity degradation ceremony on us.
But how can our individual defiance reverse the ubiquitous practice of diagnosis/identity degradation?
Briefly, I will just say, as I approach 70 years in our Orwellian dreamscape, that I don’t look to social institutions like the law, religion, academia, political ideologies, or the media to save us from the societal dead end we inhabit.
The collective horsepower to take back our culture from its blind masters resides right here on Madinamerica and on every psych ward and in every prison yard.
That transformative social power was present in the anti-war and social protest movement of the 1960′s, and the recent Occupy movement, the civil and women’s rights and LBGT movements, and our mad pride/consumer/survivor/ peer/recovery/human rights movement.
Our ceremonies of self-love and love for each other as comrades, and the ceremonies of open defiance we practice together, don’t mean the tragic fruits of rampant anarchy will replace the identity degradation ceremonies and human rights abuses that are masked by medical legitimacy.
Revolution is the word and the answer and it always has been. It is the sure path to personal and societal freedom and transformation. If we listen to our hearts and not so much to our heads, the right direction will keep being shown to us of how to proceed.
Imagine a society where one day psychiatric diagnosis and identity degradation ceremonies don’t happen any more. Like John Lennon sang: “It’s easy if you try.”
This entry first appeared at Mad in America on August 2, 2013.
The last sentence in a recent New York Times article entitled “Program Compelling Outpatient Treatment for Mental Illness is Working, Study Says” tells of the police taking a man to get his monthly Haldol injection under the involuntary treatment law.
For years I worked on a community based team that helped homeless people in extreme states who had histories of being frequently hospitalized.
I met them wherever they lived – on the streets, under bridges, in abandoned buildings, and in parks. I formed close, trusting connections by being open-hearted and harmlessly helpful. I wasn’t trying to “treat” them or enforce medication compliance.
Many people made remarkable changes because I had truly befriended them, pursued them with compassion to where they lived in isolation, helped them get food, wash their clothes, find safe housing.
It breaks my heart to see that police-state tactics such as forced Haldol injections are understood to be the only thing that can reach some people. I know it isn’t true.
I remember the supervisor of our county hospital psychiatric emergency unit contacting me, because a long-time homeless man who I was helping, hadn’t been there in over six months.
He had been the most frequently-hospitalized person in our large county mental health system. He often had been brought to psychiatric emergency by the police – sometimes several times a month. He had spent long months in the state hospital.
The supervisor really couldn’t understand that my simply spending time with him on the streets almost every day was making the difference.
But it was.
That simple friendly contact – when we are not forcing anything on someone, but instead are harmlessly helpful and kind – is precisely what helps someone relax and choose to pursue the basic things they need, like food, clothing and shelter.
But more, that frequent time spent with me simply listening and warmly feeling concern for the homeless man, began to gradually reduce the intensity of the extreme emotional state he usually was in. He became more and more present in the moment, more lucid and at ease.
That gradual shift into a more focused and relaxed state, has happened with many other people in extreme states that I have spent time with in that heart-centered way over the past 35 years.
You might want to see one of my related MIA blog essays, “Responding to Madness With Loving Receptivity: A Practical Guide.”
I hope that our society doesn’t persist in the fear-induced reaction that forces people in our communities who are experiencing extreme states to experience violations of their human rights as well.
It’s not right, and It’s not necessary.