Sunday, April 30, 2017

Comments by madmom

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  • Dear Sera: This is a most interesting article on a really important topic. Thank you! One thing that struck me is your description of Mental Health of America which was originally founded by someone with lived experience and is now run by the father of someone with lived experience. Does this pattern also apply to the membership of the Board of Directors and staff? What about NAMI? Regardless, I think its high time we organize to create a accreditation process for so-called mental health advocacy organizations. One obvious criteria for certification would be more than 50% of the Board is made up by people with lived experience, and by that I mean people who have been on the sharp end of the needle. Another criteria would be funding sources. No organization receiving funds from big Pharma or other medical technology company could be a patient ‘advocacy’ organization. Consumer safety organizations would never allow such conflicts of interest. Why do we allow this astro turfing to take place in the field of mental health? Organic farmers banded together in Oregon during the seventies to form T.I.L.T.H., an national certification process for organic farmers? This took foresight. To this day, despite strong industry lobbying, marketing of organic food is strictly regulated by experts with integrity who embrace the stewardship of the earth, water, and soil as well as the safety of consumers as their highest mission. Why can’t we do the same and shame NAMI members into accepting that their advocacy organization is little more than a front for big Pharma and advocates for AOT such as Jaffe?

  • I agree. There psychiatrists are not very courageous. They rarely cross or disagree with a colleague, rarely stick up for a patient that everyone else has given up on, rarely offer any overtures of restorative justice, such as to apologize for harm meted out by a colleague, rarely defy convention by assisting a patient wean herself off harmful meds, and they generally put maintaining their license, reducing their legal exposure, and their financial security ahead of the best interests of their patients.

  • Thanks Michael:

    Beautiful piece on hope. My adult daughter is home again at last and is making wonderful progress on all fronts. Seven years of institutionalization (bouncing from psychiatric facility to foster home to acute care hospital to state mental hospital back to psychiatric facility in an endless cycle) did not kill her hope or ours. But we have our challenges. In future, I hope you drill down even further into the mechanics of hope. How does a family member or a caregiver, untrained and uneducated but full of hope, coach or encourage a loved one without pushing them to do things that are uncomfortable, without being irritating or irrelevant?

  • This is a really uplifting story and man, do I need the lift!~ Thank you! Now for the shadow. When I think of how my daughter’s psychiatrists would react to your post, possibly, no, probably with contempt, then I go back to being withered. Is it possibly to have the same love for the very people who I believe have harmed and continue to harm my daughter? I absolutely wither in the company of my daughter’s treatment providers. They consider her to be seriously and chronically mentally ill and I cultivate the hope of her full recovery and her ability to live a drug free life.

  • Don, I couldn’t agree with you more, particularly ‘many of them are afraid to divulge their experiences with their psychiatrists. They fear they will be institutionalized or forced into other treatments’. This fear cannot be understated. As the mother of an adult psychiatric survivor who recently returned home after years of involuntary treatment, I see how this fear plays out in the recovery process nearly every day.

    I know my daughter quickly learned about the importance of hiding her feelings and thoughts from a litany of psychiatrists in order to win her discharge from the institution-du-jour or prevent her prescriber-du-jour from upping her dose, since she was court ordered to take medications and she knew it was a lost cause to refuse to comply with the treatment orders and the only way to avoid being destroyed like her peers who had been in the system for decades, was to ‘fake’ normality by appearing to be grateful for her ‘treatment’ a profoundly destructive practice.

    The enormous full time effort exerted by my daughter to hide her authentic feelings and sensations, because of the very real risk of being labeled and drugged even more, combined with the dissociative side effects of medications she is taking is antithetical to the process of healing and recovery from trauma that anyone with a modicum of common sense would envision for his/her loved one.

    Supporting someone who is recovering from trauma requires impeccable communication. It is very challenging to obtain even basic information from someone who has been deeply harmed by labeling and involuntary treatment. Even conventions like everyday banter and small talk can be painstakingly difficult for that person. It takes a rebuilding of trust for that person to be able to reveal ‘symptoms’ and what if a person’s ‘symptoms’ are enjoyable, helpful, stimulating, or critical for them to cope with some long buried pain or trauma?

    I would only add that many are afraid to divulge their experiences not just to a professional but to a family member or friend as well out of fear that the family member will then run and divulge everything to the professional in his/her life. Family members collude routinely with psychiatrists to pathologize the behavior of a loved one and justify involuntary treatment. I know this from talking personally to other parents in NAMI and simply reading the comments of family members posted on the internet.

    Let’s not forget that the multi-billion dollar ‘anti-stigma’ campaigns funded by big Pharma have impressed upon people the importance of talking to one another about mental health but not in a way that makes it safe for people who are experiencing unusual thoughts or perceptions to reveal how they are thinking and feeling to their family members.

    Family members have been conditioned from decades of marketing propaganda to believe that ‘normal’ exists and anyone whose thoughts and perceptions do not meet the criteria for ‘normal’ should immediately seek help from the ‘system’ which is laden with problems of its own but unlike individuals and families who make themselves vulnerable by seeking help, the spokespeople for the ‘system’ will not admit that they too, have issues and put the protection of their status and the legitimacy of their profession ahead of the welfare of those they serve.

  • I laughed when you described becoming sleepy while listening to your client. I put a counselor to sleep once. I was going on and on about the story of my life and three quarters of the way through my session I realized my counselor’s chin, had slumped till it was touching his chest, his eyes were closed and he was softly snoring. I was mortified and it took me nearly two decades to bring myself to see a counselor again. Counseling people must be hard work, the focus required to focus and radically listen to people’s pain and anger and anxiety while not getting drawn into the drama; there is a fine line remaining objective without becoming robot like. Wouldn’t it be good if most counselors limited the number of clients they saw everyday, say to one per day, or one day per week and augment their income from other non-mental-health-related sources such as farming or landscaping or construction or computer programming, etc? The breadth of other non mental health related experiences may create more of a multi disciplinary knowledge base and symbolism from which to draw on, possibly enriching their mental health practice while help them be well rounded, satisfied, and grounded. I think it may also make them more accessible to their clients. Just a thought.

  • Her plight is not uncommon and I have lots of hope for my daughter to live a full and rewarding life rich with meaning and purpose. Psychiatric survivors who lead meaningful lives, especially those who became emancipated from the mental health system because they had access to alternative models are fountains of wisdom. I remember when my oldest sister spent a year in a psychotic state traveling around Europe in her thirties, her landing was to live with my parents for several years, then move to San Francisco where she had access to years of jungian and Gestalt therapy. she became a teacher and had a long, rewarding teaching career in the California public school system as a special education instructor. she became the go-to person to whom teachers referred their ‘worst of the worst’ students: children with severe behavioral issues. She became literally, a ‘children whisperer’ Adults referred themselves to her and she was too kind to turn people away. Her circle of friends was indistinguishable from the individuals who came to her for constant consolation and support

  • Dr. Berezin:

    Thank for you this article, which is more concise than your previous articles and a good introduction for someone who is unfamiliar with your approach. It may offer some sanctuary for individuals who are fleeing from the medical model but I suspect most of your clients are privileged and it is too academic to be of use to families like ours. Still, your outspokenness may be able to encourage some younger psychiatrists to practice differently. Most clients in the community mental health system are like my daughter: stuck in the default, one-size-fits-all public system because of their lack of privilege or because their behavior or adverse drug reactions were criminalized, in which case, no private psychiatrist will take their case. A slow trickle down method of reforming psychiatry ‘from within’ is not enough to turn the tide for the unfortunate tsunami of people who are at risk of being tortured and killed in today’s system. We need a full fledged revolution.

    I am happy to report that my adult daughter, home at last after seven years of institutionalization, read your article in entirety and had a favorable response. She said that your ideas represent “a truth that would like to be recognized” She also noted that it is not as “anti psychiatry” as some of the other articles on this site. Presumably this makes it safer for her.

    My daughter is very much on the radar of the community mental health workers and because of this, she is particularly at risk of having her freedom taken away. For her, cooperating with her psychiatrist is not so much of a choice as a survival tactic. In the public system there is a dearth of providers who believe in alternatives; the medical model reigns supreme, N.A.M.I. reinforces the status quo, and human rights abuses are rampant. In my daughter’s world, my daughter has to cow-tow to ‘professionals’ who would laugh at this article.

    Even closed-door allies, administrators and providers who secretly laud your approach plod to work everyday and have no desire to upset the apple cart; they allay their guilt by saying “Once I am retired, I will speak out. For now, this approach is too ‘impractical’. A psychotherapeutic approach in which a highly educated professional is tasked with developing a relationship with someone at the rate of $300/hour will never find a home in the system under which I work. I have to move massive amounts of people through this pipeline”.

    My daughter ironically lost herself in the wilderness of our mental health system as a young adult; she may have remained unscathed had she received appropriate talk therapy or other helpful support in her adolescence. Unfortunately, once she was labeled and involuntarily committed, her spirited resistance led to psychiatric abuse and cover-up. Psychiatric abuse is a unique form of trauma that you do not list on your list of trauma, unless you consider psychiatric abuse to be non-existent or to fall under the broad umbrella of ‘loss’. One cannot underestimate the harm caused by loss of human liberty, loss of agency, loss of control, etc. Imagine my daughter’s trauma of being forced to ingest high doses of a medication that causes her to become incontinent, then while she sit through a commitment hearing when she is talked about by a judge, public defense attorney and psychiatrist who are all chummy, describing their mutual fly fishing trips, make indirect references to the urine on my daughter’s hospital gown as ‘evidence’ of her grave illness for they happily recommit her to involuntary care where she will continue to be forcibly medicated in perpetuity.

    For years, my daughter was a lone voice in the wilderness, crying futilely for her right to live a “drug free lifestyle” without any help or support from an army of mental health care workers, psychologists, nurses, social workers, and psychiatrists. She would have loved an approach like yours but no such alternative was made available to her.

    Like many psychiatric survivors, she experienced multiple, consecutive involuntary (long-term) psychiatric incarcerations as a result of her ‘non-compliance’ and because her adverse drug reactions were criminalized, trauma was heaped onto trauma via the corrections/justice systems which in collusion with psychiatry in an appalling manner that I thought would only be possible in a totalitarian society.

    During her many long-term hospitalizations, very little if any effort was made by a dizzying parade of doctors and other prescribers to distinguish between symptoms caused by her original trauma (the circumstances that led me to seek support from the mental health system in the first place), the symptoms caused by the compounding of her trauma through such conveyances as restraint, isolation and forced drugging, the psychiatric symptoms caused by adverse drug reactions (high dose polypharmacy) which we hope have not permanently damaged her dopinergic/serotinergic systems, and the symptoms of discontinuation syndrome, from those holidays in which she was able to elope, and in failed attempts to come off the drugs without any support, ended back in the system on even more drugs than ever.

    Anyway, things are getting much better. She is on a fraction of the medication she was forced to take for years and is doing a lot better for it. Despite the modicum of help she got from a psychiatrist to wean off several medications including Thorazine and Haldol, her progress is a testament to her resiliency against torture and abuse, not a testament to psychiatrists ability to change. When asked about her survival she pragmatically claims “My plan is to simply outlive the mental health system”. The level of corruption is so deep, and the outcomes are so bad, the current system of care is unsustainable so in a way, she may have a very viable emanacipation strategy—-just outlive the bastards.

  • AntiP: I didn’t interpret the article in the same way you did. I was left with the distinct feeling that the author had been very supportive of his brother, visiting him regularly and at times, housing him and he genuinely loves his brother. I read the grief and the hopelessness behind the lines but I don’t think he overly blamed his brother and I think he questioned he medical model but maybe not as vociferously as you would like.

    As a family member who has logged 1,000+ hours in psychiatric facilities which were, in my opinion, highly restrictive, harmful, and disempowering , this article resonated slightly; it certainly didn’t whitewash how these places appear. The comparison to One Flew Over the Cuckoo’s Nest was not lost to this reader and it reminded me that people who are incarcerated have very few visitors. The author was an exception to this trend. In cases where families are abusive, good riddance. But there are non- abusive families who stop visiting their loved ones in secure, psychiatric facilities. Why? What happens to families that they would stop visiting their loved one at his/her time of greatest need, even if that time of need stretches out to years, even decades?

    Most families want stability for a loved one, i.e. a life off the streets and shielded from being the victim of crime, or worse, being a perpetrator of a crime, even if this ‘stability’ comes at a very high price. Most families cannot sustain the desire to help a loved one become truly re-empowered in the sense that their rights are fully restored and the psychiatric harm they experienced in the system is atoned for; because to do so would mean taking on the entire system against great odds, even while trying to mend the very fiber of a relationship which was horribly ripped and leveraged by the system which doesn’t favor outsiders who question the ‘treatment’

    I think that many family members do eventually come to question the harmful nature of the medical model of ‘mental illness’ and family members themselves have been traumatized and treated shabbily when they speak out and advocate from this perspective. Maybe this isn’t in your experience but it is my experience. You rarely hear the stories of families who are demoralized and crushed but it happens frequently. Families have no supports, only NAMI, the pseudo consumer organization that is a shill for big Pharma.

    Family members may be victims themselves. An individual may have the memory of being assaulted or had every piece of their furniture set on fire by a loved one while he/she was in a state of medication induced akathisia or during a rebound psychosis caused by a medication withdrawal during which the person withdrawing had no social or medical supports whatsoever. This is traumatizing not just for the diagnosed one but for all of his/her loved ones.

    Most families, visiting the back wards, can quickly size up how useless, crazy-making, and harmful the system is it is yet it is like trying to fight Darth Vader and the Dark Star. We are as powerless as our loved one, caught in the grips of a mad system, we are like little freedom fighters down to a small star fleet on the margins of the universe.

    Are family members to blame if we see how crazy our entire system is and we run away out of terror? Yes, it haunts us if we at times, have left our loved one to fend almost entirely for him/herself in these institutional hell-holes which are rife with corruption, neglect, and psychiatric harm.

    But we too, have been marginalized by questioning the medical model. We have whispered conspiratorially to our loved in the hallways of the back wards: “You will get emanicapated from this place” “You will wake up from this nightmare” We too, have had to go underground with our hope. We too, have had to lie to a cynical or sadistic clinician to keep from having something negative about our loved one documented, making their fate even worse. We too, had to secretly reject the opinions and pronouncements of those who would have us ‘accept’ our loved one’s permanent status as a mental patient and to set the bar low for him/her. We whispered words of encouragement to our loved one on the phone of the back ward, because hope itself is a forbidden fruit of the mental health system so it must be whispered. MindFreedom brochures questioning shock and other atrocities must be smuggled in like contraband.

    Yes, it would be nice if family members like me were the most noble of creatures and be willing to risk everything: property, careers, friendships, whatever we possess in order to stand by a loved one who has been stripped of their humanity and fight with them in the trenches every single day against their diagnosis/labeling their ‘treatment’, their homelessness and criminalization, discrimination, stigma, helping them reject all of their labels and legally challenge their involuntary treatment (drugging) while helping them stay housed and fed and clothed, out of the reach of the law against overwhelming odds.

    Some family members are noble and and never let go. But family members who can hang on for decades are rare. Most, like me, are weak and tired and scared. We want to see our loved one happy, have sexually and romantically satisfying relationships, have lives of meaning and purpose, a place to call their own but in helping our loved ones pursue these things, we are often not willing to risk those same things in our own lives, the things we have worked hard to attain, a marriage, a home, a life. Standing in solidarity with a person on the margins is a noble pursuit few are able to accomplish for decades.

    Michael Cornwall once remarked that at the beginning of his career as a therapist, it was ‘music’ to his ears if he heard a family member came to him during the ‘first break’ or crisis involving a loved one, “She is the apple of my eye. I would give up everything to see her better!”

    But I would caution you not to judge family members too harshly because you may be harboring unrealistic ideals of how much hell a family member is able to wade through.

    I witnessed a dearth of visitors at nearly every facility where I visited my loved one. Countless times, when I was visiting my daughter on the ward, other patients, people who by my estimation were hungry for companionship and stimulation (apart from the people who are paid to ‘babysit’ them) would ask if they could participate in whatever activity my daughter and I were doing, whether it was cards, or Scrabble, singing, or just having a raucous conversation. Sometimes visitors can bring a little craziness, a little laughter to the sterile, suppressed environment of a back ward. This is light, this is healing. Sometimes staff support and encourage outside visits and on rare occasions help ‘break’ the rules or make exceptions to policies in order to make such visits pleasant and frequent. Often though, clinical staff do not favor outside visitors because of the potential exposure of their harm and corruption. Visitors can witness psychiatric harm and human rights violation and increase the likelihood that such harm will be reported on and exposed.

    In this story, the brother was clearly bringing a breath of fresh air to a dilapidated, terrible environment to bring ‘normalcy’ to his brother. Did you not read the part about how they threw food at the televised game and whooped it up? Surely, this had staff squirming. Why did you not see any of the positive aspects of this story?

    As a family member, we too, have been traumatized by the restrictions placed on our contact with our daughter, by the nonsensical multiple subjective diagnoses and the terrible nature of the social control that is masked as ‘therapy’ or ]’treatment’, such as restraints, isolation, forced medication, etc. When people are at their most vulnerable, rather than help people build up their boundaries/shields and empower people back to healthy, we strip them of every last dignity and consolation and take away their rights, in effect, compounding their original trauma that led them to be diagnosed in the first place, dis-empowering and making them chronically, socially isolated.

    My reading is that the author is aware of the conflicting and hypocritical nature of the mental health system. He questions whether the system propagates illness rather than wellness. Rather than judge this person, I think it is prudent to support such individuals.

  • This story makes me madder than a hornet. As a family member of a consumer/survivor I count on mental workers to treat my daughter fairly. Clearly, most mental health workers are in it for the money and have nothing but disdain for their clients. The few mental health workers who have any integrity get fired, quit mid-career or retire.

    I cannot trust the community of mental health system in our community with the soulful responsibility of caring for and supporting my daughter. These professionals co-opt the rhetoric of the recovery movement but show disdain for people like my daughter. We need a full scale revolution

  • I think it’s something darker. Anti-psychiatry don’t seem to get one important fact: psychiatry gets it’s power and authority not as much from big Pharma as from family members who are covering up abuse and neglect. While I don’t believe that all families are covering up dark secrets, indeed–many childhood traumas that make individuals more susceptible to ‘psychosis’ may have nothing to do with familial abuse—but the most vocal leaders of NAMI, the ones who set the agenda and design the curriculum make it very difficult for the rank and file NAMI members to engage in mutually supportive dialogues as it concerns alternative approaches (psycho/social/spiritual) in relation to a suffering family member. And if NAMI won’t wade in those waters then the game is up. I think that in order to challenge psychiatry’s authority, one must challenge NAMI. NAMI’s handshake with psychiatry was the original bargain with the devil that has resulted in the oppression our children are facing today.

    I’ve read a lot of the psychological explanations for ‘psychosis’ such as individuals being in ‘double binds’ and some of the various dysfunctional family dynamics experienced by some psychiatric survivors and wondered, ‘how much of these dynamics are at play in our family?’ I was amazed at how self reflection is discouraged by NAMI leaders.

    Fifty years ago, ‘schizophrenia’ was all about the mother. Today, ‘schizophrenia’ is all about brain chemicals and genes. Today, a new paradigm requires that we consider ‘schizophrenia’ from another angle such as ‘community’ so as to properly elevate and address the relational piece without demonizing the mother again.

    If you read NAMI’s ‘family to family’ curriculum you will see that all of NAMI’s energy is being put into promoting the bio chemical ideology to make it easier to cement over individual and family trauma. Rewriting and promoting that curriculum is going to take a lot of time and money. Not sure where that is going to come from.

    I think we really need to challenge NAMI more than the American Psychiatric Association. It is such an entanglement I don’t know where to begin.

  • Thank you for mentioning the stressor places on families: economic pressures, making them especially vulnerable to “acquiescing to any societally sanctioned authority”

    I know many families in which one breadwinner was obliged to give up his/her job and/or career or accept a job at much lower pay/hours in order to provide care for a family member who is in an extreme state lasting years and years. We are in this boat. My wages are 25% of what they were before our family member was singled out for ‘million’ dollar junk treatment by the state. Simultaneously, families who are struggling to ensure that a loved one receive alternative treatments invariably requires that they exhaust their entire savings to pay for such treatment.

    You also hit the nail on the head by mentioning that community supports have withered. I am lucky in that I have a loving extended family within a two hour driving distance. Most no longer enjoy proximity to extended families, many do not even know the joys provided by close-knot multi generational families, and multi-generational households and ethnic neighborhoods have gone the way of the butter churn. Even church membership is down. We know longer have a village, just broken down isolated families struggling.

    I know many families who have made extraordinary financial sacrifices to help shield a loved one from psychiatric abuse or the reach of the law. A typical mother or father who has read and absorbed Robert Whitaker’s ‘Anatomy of an Epidemic’ and eschewed the NAMI propoganda has virtually no supports!

    These families are typically fighting battles on multiple fronts: the family member who is diagnosed tends to resent the attention he/she is receiving. Siblings tend to resent the attention the diagnosed one is receiving. A spouse/s tend to resent the attention received by the diagnosed one. I am fortunate insofar as we have been able to work through many of these tensions, no thanks to the state and because of my supportive extended family.

    Many parents who welcome home a loved one newly released from the mental hospital are struggling to ‘de-condition’ him/her; I would be very surprised if most people who were hospitalized do not identify with having been deeply harmed by their involuntary treatment or chronic institutionalization. Families must employ some of the same ‘kidnapping’ procedures used to pluck a loved one from a cult. The messaging of hopelessness, ‘You have a permanent disability’ etc and the infantilization of people in hospitals and institutions is deeply troubling to me. I think this is one of the reasons why so many individuals have trouble tapering off their psychiatric medications. No reconciliation no restorative justice is executed, no apologies are made by psychiatrists for past treatment. The power of their words ‘You are seriously ill’ rings in the ears of the diagnosed one with far reaching rupercussions. When a person experiences protracted withdrawal symptoms, and the body is on fire, those words continue to haunt individuals trying desperately to return to their baseline which was actually not as bad as their new post psychiatry baseline.

    Hospitals routinely dump and release people they have harmed with no impunity and exhausted families are left to pick up the pieces.

    My daughter has returned home. We are rejoicing. She has been shuttled for years in an ever changing sequence of secure, psychiatric institutions. She simultaneously rejoices at the opportunities afforded by the gift of freedom and responsibility, while simultaneously resenting at times, having to pull her own weight in a mutually supportive, interdependent household. We carry our wood, chop wood, heat water to wash dishes, use solar heat, grow and can our own food. As individual household members we tend to relish quiet time apart from one another, as well as our time together. We expect every member of the household to enjoy solitude from time to time and we do not value opportunities to pry on the lives of young adults or observed their behaviors constantly, let alone record or discuss it at every given moment, looking for ‘symptoms’. This seems very boring

    In institutions she learned to live a different kind of life one that relies heavily on amenities we don’t have. Sometimes it is hard to differentiate between her perceived disability, or her feigned disability, when such feigning would relieve her of challenges. Furthermore, when she perceives that she is disabled in a given situation, it is hard to discern if this perception is a warped perception based on a the very real debilitating effects of long term over drugging or the message of hopelessness that permeates through these institutions, despite their having co-opted the rhetoric of the recovery movement.

    Such conflict typically are resolved in families when the children are pre-adolescent, while in some dysfunctional families, the conflicts may be spread out over longer period. When a family member returns home after years of institutionalization, the process starts all over again back to square one. A badly wounded individual may need to be taught how to do basic functions all over again and yet this is blamed on ‘schizophrenia’. Hogwash! This is institutionalization and parents should be fighting this. Why hasn’t NAMI fought this?

    Not once in seven years of our daughter being shuttled from hospital to foster home to psychiatric facility, was our family offered family counseling to ease the tension during critical junctures. Some of these tensions were brewing for years but they were compounded greatly by our daughter’s diagnosis and involuntary treatment.

    Our insistence at being present at commitment hearings was ignored; our presence at treatment team meetings was either discouraged outright OR the medical decisions were made in advance and our invitation to such meetings was merely to give the appearance of transparency and collaboration.

    Medical care providers who want to label and drug individuals for life, or recommend shock, as they did at one point with my daughter, usually want the latitude to operate without the hassle of due process and legal paperwork, the profound disdain these providers have for civil liberties and the sloppiness and lack of soulful thought with which authorities placed on my daughter’s ‘due process’ was appalling and seered into my my memory for life, the knowledge of the compelling need for reform in the mental health courts/justice system and an immediate accounting of the lack of competent legal counsel for psychiatrically diagnosed folks.

    The judge and medical authorities tend to favor state sanctioned arrangements in which individuals remain ‘wards’ of the state, are assigned to ad-litem guardians or are civilly committed indefinitely. My daughter was civilly committed eight times, each commitment lasting 180 days. Many are dumped in AOT programs indefinitely and parents are so traumatized and exhausted economically and emotionally that they often give up on their own kin.

    Mental health care workers and even some NAMI parent advocates are urging distressed family members to help their loved one commit a minor crime in order to receive mental health care, despite the fact that this care is ineffective and inhumane! Once an individual is forensically committed, the argument goes, then the individual is eligible to receive indefinite oversight at the taxpayers expense, never mind that the data shows dismal outcomes.

    Those parents who manage, against all odds, to maintain a loving and close relationship with an institutionalized loved one often find that outpatient treatment providers often leverage families apart even more than staff at the big box institutions. These community based treatment programs claim to be underfunded but in my estimation they are loaded, yet they squander their budget allocations on things which make people ill, not things which make people well and they have very few peer specialists. The few peer specialists they do hire are mandated to do things that should make the skin crawl of anyone who has been on the sharp end of a needle and they are not strategically placed in homeless shelters, sanctioned/unsanctioned campgrounds for the homeless, soup kitchens, jails, etc. The very few peer specialists hired by the community mental health agencies are not getting their hands dirty enough. Rather than aspire to have offices and be bureaucrats like their better paid colleagues, they need to walk the streets and engage with homeless youth and people who need clean socks and clean needles. Many of those on the streets are psychiatric survivors. What is their story?

    Those infamous sixteen bed secure treatment facilities are the worst. They feature a rotating high-turnover population of over/under-educated underpaid and grouchy mental health workers who may indiscriminately limit physical contact between parents and their adult/minor children simply on the basis of a parent being critical of their loved one’s psychiatric treatment, or limited freedoms.

    Anyway, thanks for writing an article that includes a snippet of what parents are going through in this crazy making system.

  • Good point Steve: When the harm of psychiatric treatment becomes common knowledge, psychiatrists will be scrambling for a purpose. I applaud the model above because no technology involved. But because there is no patented technology involved, there is nothing in this model for psychiatrists to own and monopolize to sustain the authority that they currently enjoy. So this common sense model will not get a fair trial, let alone sustained programmatic funding on a wide scale. We already have the evidence base for what works. All the grant funding in the world will not topple the authority of the practitioners who benefit from the current system. I only know that I believe in a non violent revolution, so while I believe it is imperative to continue to undermine the power and authority of psychiatry, a pseudo science that is used as a form of social control, I believe that force is not the answer, otherwise we become just like those who restrain and forcibly inject and otherwise do violence to our loved ones

  • I’m glad someone is finally covering this topic. This is an issue around which even N.A.M.I. mommies and their big Pharma funded “anti stigma” campaign cheerleaders can probably find some common ground with those of us who identify as allies of psychiatric survivors and NAMI rejects.

    I’ve logged in a lot of visiting hours during the last seven years and I witnessed a lot of human rights violations, not even counting the obvious lack of choices and alternatives for individuals, who like my daughter wanted safety and support without the prospect of being forcibly medicated or shocked. There is plenty of room for improvement in hospitals not counting the isolation, restraints, and other forms of abuse and torture.

    My experience of visiting my daughter in two state mental hospitals, and two acute care hospitals, and one psychiatric secure residential unit is that everyone of them routinely violates basic human rights.

    Presents are unwrapped and rules are non uniformly judged as to which things are dangerous and which are not. One day, a hand knitted scarf will be confiscated because it can be unraveled and used to choke people. Come back with the same scarf and a different staff member will wave it by. Employees are simultaneously given too much discretion to interpret vague rules giving sadists and opportunity to flaunt and abuse power, or they are not given enough discretion to show compassion in cases where it would obviously have a therapeutic effect on someone longing for a reminder of home. I think that if peer specialists would outnumber staff members without lived experience of being locked up, this problem would go away. In other words, it’s not a problem of the rules themselves but how they are interpreted and carried out and by whom. This is a staff problem. Peers should outnumber folks with no lived experience in all staffing and hiring.

    The way psychiatric inmates win privileges is by and of itself demeaning and undignified. A patient, who for instance, is multi lingual and has a Phd in economics may be told gleefully by a high school educated mental health worker “Great work, Mr. So and So! You have enough points now to get a soda!” Petty system of rewards and punishments based on behavioral science or operant conditioning should be abolished in all so-called places of healing. People who are involuntarily committed in a hospital are not interested in chips and soda and pizza night and group movie night. They are interested in how to win their release and whether they are going to lose their job, their boyfriend, apartment, etc. while they are being detained for up to six months. They also want stimulating recreational and vocation activities and real therapy in accordance their goals and dreams, not gluing popsicle sticks together in art ‘therapy’

    One hospital where my daughter was, gave points based on attendance at mickey mouse group ‘therapy’ sessions. My daughter told me about one group session run by a NAMI volunteer. My question is this: how does NAMI earn the right to conduct a group therapy session in a hospital when their cirriculuum sucks? NAMI only offers biomedical propoganda.

    Patients are routinely restricted in the kind of reading material they can access. Brochures and fliers are limited to mainstream consumer advocacy organizations such as NAMI. I just had a call from a MindFreedom member who was in tears because their MindFreedom newsletter was confiscated from his room. It was a symbol of hope for him. On the cover of that issue was a group of psychiatric survivors protesting in front of the American Psychiatric Association. One of the protesters held a sign that read ‘I am not a case to be managed’. Why would someone steal something from a patient’s room like that? That is invasive.

    Once, when picking up my daughter from a secure unit to drive her to an Icarus Project meeting, the director of the facility drew me into his office for a stern lecture. Apparently, he had visited the website of the Icarus Project and was concerned that my daughter would be exposed to “militaristic” propoganda and be persuaded to stop taking her medication. That is the word he used, “militaristic” The only times my daughter was exposed to militarism was in the mental health system when she was pinned down and forcibly injected. Jeesh.

    At acute care hospitals, visiting hours are highly restricted. If you have a loved one in the ICU of the same hospital, you can visit with far fewer restrictions. Privacy laws are used as an excuse for a number of other restrictions. For instance, you cannot bring a cell phone from the outside into a restricted facility based on the fear that someone from the outside will take pictures of other patients. Never mind, if you want to provide a loved one with a cell phone in order to protect HER privacy so she can make a private call outside the hearing of nurses, other patients, etc. I would have given my eye teeth to have a cell phone to record an instance when no less than five orderlies jumped on a male patient who was not being violent. I digress.

    I witnessed the mother of a psychiatric inmate, a non English speaker from Ethiopia, weep because they would not let her bring flatbread, olive oil, and other staples of her son’s diet into the backward. He would not touch the wonder bread, margarine, iceburg salads, pizza, frozen chicken mgnuggets and other processed food entries that were routinely served, cafeteria style by the state hospital. He was losing weight too, I couldn’t believe how gaunt he was. You would think the staff would be falling over themselves accepting help from a loved one with an intimate knowledge of her son’s ethnic and dietary preferences. Instead, ‘safety’ was limited to rules created for a minority of patients who were dealing with addiction issues. Supposedly, this little old Ethiopian woman could have put crack cocaine in her son’s goat cheese.

    Visitors at Oregon State Hospital are routinely made to wait in the pouring rain, sometimes up to twenty minutes before an electronic door opens and they are allowed into a screening room where they are screened for contraband. They lock everything up. The whole process takes visitors 1/2 to be screened and have their loved one brought down. Then, they can enjoy the privilege of either listening to their loved one through a pexiglass window or if they have earned the correct amount of privileges, they can sit at a cafeteria style table and visit with their loved one with several orderlies prying on their every word. So much for privacy.

  • Eva

    In your practice, how many times did you help patients withdraw from one or more psychiatric drugs? This is where your field could provide some real benefits for people like my daughter: to serve as a shield for people whose withdrawal symptoms are unfairly labled as the ‘original’ disease coming back and to promote unbiased and REAL scientific research on the subject of discontinuation syndrome and push for it published in the journals and talked about at the APA conventions and recognized as a very real phenonemon that exists in relation to every category of psychatric drug including neuroleptics, mood stabilizers, benzo’s, etc. Some people in this community think that your guild is so corrupt there is no role for psychiatry in the new paradigm of mental health care. I disagree. I think psychiatrists helped get one out of six American on potentially harmful psychiatric drugs, they can and should help us get Americans off psychiatric drugs. At this level of drugging, the population of people who are victims of iatrogenic harm is too big to ignore. The only way it can be ignored is if we become a fascist state and we lose a free press, or universities and medical schools completely sell out to corporate interests. This trend can still be reversed but it takes people like you getting off the gravy train. I commend you for leaving the field voluntarily.

  • This is the best written personal account on Mad in America I’ve read since it was founded. Francesca, this just rings with authenticity and power. Thank you! This should be printed and distributed as a part of a mandatory training for every peer specialist, psychiatric nurse, psychologist, any professional who routinely treats individuals involuntarily. Treatment providers need to understand how traumatizing and dehumanizing involuntary treatment can be and story telling and personal disclosure is the only way to get the point across.

    This clearly illustrates how dangerous it is for service users to express even a modicum of the anger and rage that many are inclined to feel, after their basic rights are taken away, and when they are victims of the unchecked power that even the lowest MH workers exercise. Patients can get documented as non compliant for not attending therapeutic activities such as gluing glitter to paper plates cut out in the shape of Easter eggs. Never mind if the patient who is non-compliant is multi lingual and has a PhD in art history or is Islamic. Many professionals document ‘behaviors’ and trifles with the result of a person losing privileges or receiving potentially harmful ‘treatment’ decisions such as increasing medication dosages. I have observed first-hand abuses like this against my daughter by in hospitals, foster homes, and secure psychiatric ‘step down’ facilities.

    Flattery and faking ‘normal’ were the only ways that my daughter could win her discharge from the state hospital but she could never win her complete freedom in the community because she failed to exhibit a textbook definition of ‘insight’ which is basically the willingness to identify with her mental health disorder and accept that she needed maintenance drugs for life. It reminds me of the tortures imposed by the Inquisition against so-called ‘witches’.

    Anyway, our daughter is living at home with us at last. From our daily struggles, I can see how harmful family dynamics can be, like a garden in need of constant weed pulling. It is sometimes tempting to mirror the unhealthy upstairs/downstairs dynamics of the current mental health system, whereby any expression of rage, fear, or grief by the diagnosed one is automatically viewed as a terrifying ‘symptom’ to be repressed at all cost. This reduction ism is robbing families of the opportunity for healthy and honest group reflection and remediation.

    I can’t stand the ‘upstairs-downstairs’ mentality that exists between patients and staff. I also can’t stand the way some families members have been conditioned to view a loved one with a diagnosis. So much of it is bunk and instead of getting real help with the task of drilling down through the family (right on up to line to grandma and grandpa) to find out what is wheat to be treasured and what is chaff to be discarded, most family members can only find milk and cookies from pseudo advocacy organizations like NAMI which reinforce the medical model and exist simply to be a mouthpiece for big Pharma while giving parents a place to have pizza once a week while bitching about their children’s lack of ‘insight’

    Much of this faulty messaging is internalized. My daughter once stated that she is the ‘weak link’ of our family. What a terrible thought! Anyone who can survive the worst that our mental health system can throw out while maintain her dignity and humanity is the strongest link in the chain, not the weakest. So called ‘normal’ people should be getting lessons from psychiatric survivors on how to be resilient and bring clarity and balance back to our toxic, intolerant communities. I can’t believe every day when my daughter wakes up in the morning ready to give life another shot. Believe me, we are going to need this kind of resiliency as a society as we go forward into an uncertain future.

  • Hi Nana: I meant to respond to your comment but I ended up clicking on the wrong button and I believe i ‘reported’ your comment instead. My bad. I totally can relate to your fear. I am trying to help a loved one safely taper off a powerful antipsychotic medication and I too, can get scared because I don’t want my loved one to end up in the hospital or endure any withdrawal related suffering if it is avoidable. Without leaving this site, (it is somewhat hidden since this site was redesigned) you can start a thread and and post questions about psychiatric drug withdrawal in general or questions related to the specific drug you are trying to withdraw from or you can comment on other people’s threads. There is also a site called where you can look up the number and type of side effects for nearly every psychiatric drug on the market. I believe that your question is somewhat ‘off topic’ on this blog. Best of luck!!

  • Is anyone besides me chilled by the following excerpt: “clinical teams in the unit made several stylistic changes to how they conducted rounds” I guess I’m stuck at the word ‘stylistic’ over say, ‘substantive changes’ I guess any modicum of respect given to my daughter is welcome from the usual arrogance and lack of transparency from clinicians making their rounds but Jeesh. Is this really the same as a true collaborative approach represented by Open Dialogue? If they are still harboring a ‘my way or the highway, attitude and using the same old medical approach of ‘label and medicate’ for any negative emotion my daughter exhibits, as opposed to say, reflecting on context, history, trauma, etc. what is the point? Anyone?

  • Erin321:

    I agree with you that the legal drugs are mind altering and have unpredictable effects which puts them on par with street drugs but I think it’s a tad bit irresponsible to fail to point out one major difference between street drugs and legally prescribed psychotropic medications. Their uniformity in production standards. You know exactly what you are putting in your system. Street drugs may be cut with all sorts of additives, many of which are harmful. If we activists use this kind of hyperbole our words will be turned against us and mainstream (status quo) advocates will be less likely to listen to the scientific data we are trying so hard to get into the national awareness

  • Dear David:

    I believe that your daughter, with support, will learn how to manage her anxiety without incurring the potentially deadly risks of taking an SSRI. Thankfully, your daughter respects and listens to you and you had the courage to question her diagnosis and treatment directly to the professionals at every point in this slip shod pipeline of legal drug pushers. Your daughter is lucky to have you as her father and protector.

    My daughter has had a terrible experience in the psychiatric system. Once you start down that road, it is very, very hard to get emancipated from the mental health system. It is not uncommon for young adults to start taking one drug, then receive medications to treat the side effects and before you know it your loved one’s diagnosis has ballooned into multiple, more serious diagnoses and they are on polypharmacy. I know, from experience.

  • Yes. The comments here rightly ate skeptical. Clinton’s plan seems to be out of NAMI’s playbook. At least the part about exoanding PAIMI’s funding seems to be in contrast with the spirit of the Murphy Bill. The obvious solicitations/concessions to the early intervention advocates and the post partem depression intervention advocates are unmistakeable foreboding of her friendly ties to an industry that greatly needs more regulation. Obviously, progressive lack insight to our issues. There is much more work to be done on both sides of the aisle.

  • “Therapist s of all walks of life can and should be available for those who are struggling” implies that not only do we need to vigilantly seek alternatives outside the medical model, we must also seek alternatives outside the capitalist system, no? Every resource currently available in the mainstream mental health system mustc be ‘billable’. Nearly every service that our daughter has asked for has been denied because it is not ‘billable’ Her very liberty to walk outside and get fresh air, has been denied at times.

  • GetitRight:: Thank you for the kind words. My daughter gives me strength more than I give her strength, I think. You reminded me ofthe words of my friend David Oaks (I have paraphrase as I can’t remember his exact wording) People in distress, such as those despairing about climate change, should seek consolation and get support from psychiatric survivors! They have a huge untapped wealth of acquired wissdom and resilience.

  • Dear Jen:

    I feel less isolated and more hopeful after reading your beautiful essay. Like you, when there is a hint of inspiration, making getting up in the morning a little easier, i follow it! My purpose is to achieve justice for my daughter and everyone like her who has been restrained, needle raped, secluded, institutionalized, infantalized, told “You have a brain disease and you will never recover” or “You are a burden but we are good people so we will bear you”.

    I am a complainer and a blamer and not a very kind person when I am tired. I get tired often. This movement makes me tired. I wish I could go on a long, relaxing cruise and take every single psychiatric survivor with me and we could laugh and dance and forget about labels and meds and oppression, if only for a little while.

    This essay rings so true on many levels that it makes my heart lift. My adult daughter feels that she is being slowly killed by the drugs and she is haunted by terrifying memories of seclusion. I hope she will gradually feel more optimistic about her future and I hope that she will become empowered.

    I am not an effective advocate with professionals as it concerns my daughter’s treatment. Our support of our daughter mainly consisted of visiting her regularly, nudging extended family members to visit and call her, especially on special occasions. We tried to build positive relationships with the gatekeepers, nurses, and administrators of every institution where she was forced to live, going out of our way to thank staff members for any little kindness, no matter how small, always mustering diplomacy even when our inner rage at our daughter’s violated rights was so profound that we felt like clawing solicitous and patronizing staff members with our fingernails, baring our teeth, and slashing their car tires. We tried to stay engaged without earning the monikers typically placed on family members who are too engaged, too ‘pushy’, too concerned. I occasionally hear from parents who were blackballed from facilities or falsely accused of abuse because they questioned their children’s involuntary treatment and forced drugging. Other parent activists have sacrificed much more than I to speak truth to power to arrogant prescribers and I tip my hat to them.

    Every time we said goodbye to our daughter after a visit, whether it was a private hospital, a state hospital, a foster home, a secure psychiatric residential facility, we felt like it might be the last time we would see her. We battled to keep hope alive, while feeling tired and sad; worried about the prospect that our beautiful, artistic daughter would become like many of the sheepish institutionalized people we observed, many of whom hobbled back and forth, some with the aid of canes, some with walkers, some in wheelchairs, permanently disabled with tardive diskinisia, some with jaw grinding so bad they had become toothless, some with tardive psychosis they appeared to be permanently incoherent, most with metobolic disorders and obesity from decades of drugging. And seeing all this on an ongoing basis, knowing that other, more humane alternatives exist!

    Miraculously, despite being segregated for six years from ‘sane’ society, our daughter continues to make a concerted effort to share in community life. Facilities did not grant her passes until recently when she finally landed in a humane facility founded on the principles of Viktor Frankl. Now, we can routinely take her home on overnight visits, take her horseback riding, drive her to hearing voices support group meetings in another city, to a bakery for vocational training. She is also helping me with routine data entry at MindFreedom. She missed funerals, weddings, baby showers, graduations, birthdays, and family trips, but family members sent her invitations anyway and she responded to them gracefully without complaint. She chatted about her own friends, and plans and we often didn’t know if she was recounting from memory from before her first hospitalization or if she was describing things from her imagination but it didn’t matter. Even imaginary friends and lovers and distant, positive memories can be helpful and keep hope alive. Remember that if you find yourself in solitude (not by choice) for six years! She keeps abreast of our family’ news, helping make shared family plans, while navigating internal worlds beyond my imagination and dealing with oppressive clinical practices with patience. I hope she has not ingrained helplessness!

    Despite the complexities of her internal experiences, despite the mixed messages she is given by the ‘system’ about what constitutes recovery, despite all the oppression she experiences, miraculously she finds a reason to get up every day and I am so proud of her. I love it when she remembers who she is and what she loves, despite the dissociation, the numbing side effects of the dopamine binding tranquilizers which her brain has become habituated to, despite the slanderous things that have been written about her in reams and reams of medical documents, despite the constant lack of privacy, the cameras and the supervision, she still smiles and she still shows up. She is an artist, a confident, a counselor, a healer, a leader, a singer/songwriter, poet, and and philosopher.

    Her smiles light my day. Lately, I have noticed a change in her and I don’t know if it is good, bad or neither. She still believes that she is dying but she is resigned to her ‘fate’. I too, have changed. We, her parents are tired of shedding tears and screaming inside, or worse yet, getting into arguments and blaming one another for this protracted psychiatric abuse and lack of humane alternatives. Our whole family is tired. Sometimes, the fear for my daughter’s early death due to psychiatric harm is so palpable my hair stands on end. Her hair is turning white. So is mine! Some may blame her cirumstances on we, the parents. Sometimes I blame us. I say to myself: “We should have done more to protect our daughter from harm. We should have intervened earlier. We should have sold everything we own, kidnapped her when she was on a family pass and left the county” A number of scenarios run through my mind, some more desperate than others. But I get tired of second guessing. I get tired of being angry and remorseful. For now, she is alive and that is enough. My love for her will never change.

  • This is just the tip of the iceburg. God knows what kind of maladies these children will develop due to the epidemic of SSRI abuse. This finding won’t make it to the ‘education/advocacy’ organizations that are popping up all over major US cities in order to ‘educate’ Americans about the harm of not diagnosing and treating post par tum depression. Just like the ADHD education/advocacy organizations popped up in the eighties funded by big Pharma that resulted in millions of children getting diagnosed and medicated, there has been a wave of ‘Well Mama’ organizations popping up and believe me, they don’t give unbiased presentations to the public. They favor chemical ‘cures’ over mindfulness, nutrition, and peer support. They pack their boards with M.D.’s. Every time there is a case of a mother killing her child in the news, they use these tragedies to say ‘See, this is what happens when we hide depression involving new mothers in the closet’ They never talk about the lack of supports for new mothers, domestic abuse, poverty, whether the tragedies occurred BECAUSE, not in spite of a mother receiving standard psychiatric care. Astro-turfing by big PHARMA has got to end! There is no end to the greed and depths to which big Pharma is willing to exploit in order to sell more toxic shit!!

  • J:

    I respect your perspective and I enjoy your posts. I would love nothing better than for my beautiful adult daughter to follow in your footsteps and the author of this blog by weaning herself off her psychiatric drugs. I think you and the author are both courageous and inspirations but I wanted to point out one thing about the language that you use. Many times, in private conversations with my family members and close friends, I refer to neuroleptics as ‘toxic’ or ‘poisons’ and yesterday in a meeting with a manager of a large community mental health agency which may serve my daughter I stated truthfully that in my opinion neuroleptics are ‘aging’ pills because they put our children on an early pathway to their grave. The data supports this and if you have a loved one, like I do, whose brain is habituated to ‘anti-psychotics’ (which, as most of us know, suppress the ‘symptoms’ or the states of consciousness that we lump under the category of ‘psychosis’ but which do not address the origin) is is easy to lose hope. But for all those who are stuck on these pills or who are being involuntarily treated and for those who sincerely feel that their lives have been improved by their meds, I think we should avoid inciting panic by using words like poison. Yes, there are is a grave urgency for us to educate the public and reverse the trend of over dependence on these pills but I believe we must do so responsibly. When I have used such language in the past with my daughter whose very judgement is impaired by the meds, she has gone off her meds cold turkey with disastrous effects. Many of us have found that our families cannot support a loved one through the withdrawal stage without help from the ‘system’ but even then, we often have to take the ‘system’ by the hand and walk them through the process of doing their job well. We may become resentful and impatient with the process. This may not work for everyone but many of us need the ‘system’ to succeed during withdrawal and using language that incites panic doesn’t help. Sadly, using such language with mental health care workers will be documented and used as evidence against families who are supporting a loved one. Sometimes, it will result in a ‘no contact’ order by a judge.

  • Great blog! thanks for sharing. Per your statement “Forming true solidarity requires more than an occasional blog or a thought piece.” I wholeheartedly agree, but please don’t disparage the efforts of people who are so busy just trying to survive that they have no time to contribute to the movement except for an occasional blog or a thought piece. Sometimes, helping someone navigate out of a brutal system of forced/coerced care is a full time job that can be crushing at times. The occasional blog or thought piece from individuals who are institutionalized, under AOT, or from their allies who are in a double bind trying to support them, is as welcome and as inspiring to me as letters from Birmingham Jail. These blogs and thought pieces sometimes are my oly source of hope and hope is what I personally need to survive for the battles that lie ahead! Not everyone has the leisure of attending protest rallies every month, writing to their senators, etc. Sometimes sheer survival is the only political statement that a person in crisis can make. I hope to soon join you in meaningful discussions about how to organize and unify. Just not there yet.

  • The new trend in the field of mental health research is epigenetic testing to better target psychiatric drug usage. While it is good to to hear that some researchers are following this line of research, because it is an acknowledgement of sorts, that there is such as thing as iatrogenic harm and that psychiatric drugs have paradoxical effects for many people who take psychiatric medications, it may prove to be a red herring.

    There is growing clamor to the end of the trial by error prescribing practices which harms so many, but realistically, they have been trying to find the ‘gene’ responsible for addiction and the ‘genes’ for mental illness for decades without any success. Now, suddenly, we are supposed to believe that some people are genetically predisposed to be harmed by psychiatric medication and some are pre-disposed to be helped by psychiatric medication? Why are we using psychiatric medications in the first place when we haven’t established their long term efficacy, v.s. safer alternatives, long term harms, and the degree to which people become habituated to them?

    Everything in the field of neuropsychiatric research seems to happen in a back assward fashion.

  • Rasselas.redux

    You have a long history of posting witty and insightful, sometimes satiric comments and I value your comments but this derogatory term is over the top and I’m reporting this comment so it will be removed.

  • This is a very disturbing story because it confirms what parents with a child in the mental health system already know, that it is getting even more difficult finding a therapist who is skeptical of the medical model of mental illness because therapists with integrity are under threat of losing their employment. Conversely, parents who seek non medical models of understanding and treating their children’s extreme states are also under threat of medical kidnapping of their child, or later, of losing custody or guardianship. There are other threats against parents too. I had a friend charged with a no-contact order with her adult son because she offered him a sanctuary in her home from forced drugging.

    Peer specialists are under threat of losing their employment therefore they may not speak up on behalf of a client when a treatment is harmful or disempowering to a client.

    Therapists and peer specialists who are afraid of losing their employment are generally unwilling to speak up on behalf of a client to help him/her fight an involuntary treatment order. The psychiatrist nearly always have the last say in a hearing and very few therapists are willing to cross a psychiatrist. Very few psychiatrists are willing to cross a peer. Even medical doctors who practice in other fields of medicine rarely cross a psychiatrist.

    If a parent is lucky enough to help an adult child identify a therapist who is skeptical of the medical model, say, a therapist who uses cognitive behavioral therapy for people in extreme states, let alone something even farther out on the fringe, such as shamanism, it is extremely difficult, if not impossible to integrate that into a person’s treatment plan. There are simply no choices.

    Allies and family members quickly learn that even treatment that is considered as ‘complimentary’ and not in conflict with the medical model must be done somewhat covertly, often without the knowledge of a treatment team, otherwise, a client who is empowered by such therapies may start to question the medical model or the original diagnosis. It’s like the house of cards representing the ‘disease’ management moel which always ends up in drugging begins to fall apart. All manner of bureaucratic, policy roadblocks exist to discourage implementing outside therapies, second opinions, even complimentary therapies from being funded programatically, let alone implemented on a case by case basis.

    This teaches patients who are seeking alternative models of understanding and managing their behavior, as well as their allies and family members to be covert and duplicitous, in the pursuit of recovery. To live a lie is the antithesis of what is required to achieve mental wellness, yet if one is faced with ongoing incarceration and torture, one will do whatever it takes to get out from under the threat. What a double bind.

  • kwb1965:

    Ever hear about the mind/body connection? Western medical doctors are the only healers in the world who do not diagnose and treat individuals holistically. Instead, they divorce the mind from the body to the detriment of their patients. Haven’t you ever had a chronically painful condition that caused you to become depressed? Some people with chronic debilitating pain become hopeless and even suicidal. Of course, this article is related to the focus of this blog! Many individuals seeking physical pain relief, such as fibro-myalgia, go to their doctor only to receive an SSRI or in some way are told “It’s all in your head”. On the contrary, many individuals suffering from a spiritual emergency or the after effects of childhood trauma may reject the one-size-fits-all psychiatric approach (“label and medicate”) only to be told from alternative healers that they have a dietary allergy, inflammation, etc. Either way, individuals cannot have enough exposure to recovery stories so that they can make good treatment decisions that fit their situation and their bodies. This is a recovery story and a good one at that! If the writer of this article had gone down a different path, say by taking pain-killers, who knows where he would be now, maybe with the other million or so Americans wondering how they can get off the pain med merry-go-round.

    Furthermore, the little old lady who died of an opioid over-dose is a potential ally of the psychiatric survivor/consumer. After all, both have something very important in common: the problem of the undue influence of the pharmaceutical companies on public health policies, billing practices, clinical decision-making, etc. Jeesh.

    I can see how some who are reading this article may be hard pressed to relate to an individual who participates in an “Iron-man finish”; many like me, are overweight, slightly depressed, suffer from chronic physical pain. I can barely run or swim without gasping for breathe. But I am very inspired by this person’s story and am delighted that he published it in this blog.

  • Bob:

    While you grabble with the intellectual debate (the macro) in the public, many of us are grabbling with how to steer the treatment team involved with the care of a loved one to a place where an honest dialogue can take place (Micro)

    We in the micro world benefit when there are shifts in the macro debate but those of us in the trenches are more keenly aware of the high stakes involved.

    When you feel remorse for being publicly slandered, misquoted, or economically disadvantaged because of the conflict that exists between book sales v.s scientific integrity, I hope you pause to consider that your discomfort pales in comparison to what my child is enduring: being forcibly medicated with toxins she knows are slowly killing her. This is a modern form of crucifixion which is so horrible it is beyond understanding. To chalk up the rationalization for my daughter’s torture as corporate greed and corruption misses the mark slightly. There is a patriarchal power struggle in play which I can’t completely wrap my mind around ; it has to do with the cover up of child abuse and domestic violence, as well as environmental destruction, human genocide (indigenous peoples in particular) economic instability leading to immigration. racism. living in a police state v.s individualism, etc.

    This is so much deeper than an epidemic of people with ‘chemical imbalances. Your book Anatomy of an Epidemic is to the movement to change the mental health system what Rachel Carson’s book Silent Springs was to the environmental movement. Maybe not a lucrative best seller but a pivotal point in history.

  • Can anyone recommend training for individuals who serve as ‘warm line’ volunteers? I volunteer for MindFreedom by taking/answering phones once a week and the Emotional CPR class seems ideal for this kind of volunteer work but that training is prohibitively expensive for non professionals.

  • BPD Transformation: That is an interesting question indeed. Thanks for asking. The public answer is things are a lot better in terms of our relationships (family to family, family to treatment provider, etc) and our family is experiencing some profound healing from the shared trauma of her psychiatric abuse but until the day when the world can clearly hear my daughter’s voice and she is able to have her full citizen rights restored, than no, she is not free.

    She has said that one day, she will tell me her whole story. Perhaps her story takes a long time to work through. I look forward to hearing her whole story come out. Another mom, Rossa Forbes said once and I agree: “If you look for healing, you will find it” (hope I didn’t misquote her). Its just a matter of not losing hope or faith. It’s more like a treasure hunt with tantalizing clues along the way.

  • Jack Daniels:

    Thanks for sticking up for a framework of compensation. Healers need to put food on the table too and many have student loans to pay off. As a family member, I do not have a professional’s perspective, but I think that even a flawed framework is better than no framework at all because there needs to be accountability. Just because some professionals have harmed their clients isn’t a good enough reason to dismantle a framework of care.

    There need to be licensed professional services; otherwise you would have quacks filling the void such as those Christian service providers that promise parents that they can make their gay children straight. Professionals also often a last resort safety net for individuals fleeing from abusive cults or families.

    I say this despite the fact that access to quality care is cost prohibitive for many so we have to extend services by getting involved, organizing collectives, eliminating social and economic barriers, etc.

  • The mental health system in my community has spent nearly a million dollars (U.S.) on my 26 year old daughter’s care and ‘treatment’ because she experienced extreme states while on or withdrawing from psychotropic medication and is considered to have a persistent serious mental illness. She has been involuntarily treated for over six years.
    For a fraction of that cost, I could have paid for her housing and two graduate students to share in the same apt/house as her, the training of her housemates as peer supporters, crisis intervention, etc, their wages to be my daughter’s body guard, my daughter’s college expenses, her vocational training, her vacations and retreats, yoga and mindfulness training, a private chef, nitritionnal counseling, thelist goes on.

    Everything would have been ‘evidence based’, more humane, more helpful, and more economical than paying for a constantly changing army of professionals and paid babysitters.

  • dkjamil: I just watched the movie ‘Freedom’ last night about the Underground Railroad. I’ve often reflected about what it would take to smuggle individuals in crisis to states and or countries where there is no involuntary outpatient commitment laws such as Tennessee but the sad fact is that people in crisis tend to draw a lot of attention to themselves. For instance, when my daughter experienced extreme states in the past, trying to process extreme fear or rage she would often shout, wave her arms, jump out of cars, stand in traffic, strip her clothes off, mumble to herself, etc. It is difficult to support someone in this state, let alone, guide them to a safe sanctuary where people who are specially trained can support them through the process of madness, especially when they have had their voice stifled for years and years due to incarceration, isolation, institutionalization, restraints, forced drugging, etc. I know other parents who are looking to purchase rural property in the state of Washington to create a safe sanctuary for children experiencing extreme states who are seeking emancipation from the drug cycle but one must also make friends with the neighbors, strike partnerships with the local law enforcement, etc. it takes years and years of hard work, just to save one or two individuals at a time. Frankly I don’t know we can do it without system dollars to hire helpers. It’s exhausting, even with a small group of committed psychiatric survivors and family members!

  • Bob: Thank you for attending this symposium. Your observations must have been based on comments that people made and assumptions that their stated opinions were based on. Were you able to publicly counter any of this mythology or did you mostly find yourself trapped in the role of ‘observer?’ I ask because I rarely get asked to participate in panel discussions as a presenter but when I do, I waste no time in sharing my personal story after years of observing my daughter’s adverse reactions to toxic neuroleptics and her adverse experiencing while going off her medications cold turkey.

    More often than not, when I am not ‘preaching to the converted’ I find myself attending these mainstream mental health events where NAMI tends to dominate by serving as the sole voice of the ‘consumer’ (even though their leadership is clearly biased towards professionals, family members and consumers who are happy with the status quo).

    My point is that there are very few public events in which critics of the status quo such as MindFreedom, etc. are invited to speak and even if critics of the status quo queue up to ask questions and give counter arguments during the Q and A portion of these events, our questions and comments are discounted, given less time, and glossed over.

    What role do you think philanthropy, such as FEMHC will play in building opportunities for professionals, consumers, and family members to hear different narratives about how we treat trauma and grief in this society? What strategies do you recommend to help the stories of individuals and families harmed by psychiatry and counter arguments from dissident professionals reach a mainstream audience?

    NAMI’s ‘Family to Family’ curriculum, funded by big Pharma. is one of the worst and most discouraging examples of archaic information being disseminated to family members. I highly urge you and your colleagues in FEMHC to read this curriculum carefully, as well as their website, if you can stomach it, document the egregious errors point by point, and ask NAMI for a public debate on the topic of how they are educating family members.

    I think NAMI does not serve the common good, other than provide opportunities for family members to enjoy a little fellowship and I think NAMI’s monopoly on public education and policy/legislation work is the elephant in the room that is an urgent priority to changing the narrative around mental illness.

    Some of us are are trying to organize for change (greater choices and alternatives in the MH system) and create sanctuaries like Soteria, while supporting our loved ones emotionally through the process of healing from psychiatric harm and there is very little support for our families and our children, other than NAMI. Without a large, national education/outreach/advocacy to replace NAMI, we parents are trying to fight Goliath and there is noone watching our backs.

  • Oldhead: “Sad in a way, this was such a great propaganda tool for us.” That is very callous, triggering, insensitive thing to say, considering some of the readers on this site are involuntarily treated and forcibly medicated! Maybe you better get up from your armchair one day and do some field work: i.e. help out at your local soup kitchen, help someone in crisis on a hotline, etc. You might be reminded of what is at stake. The people who are at risk of being given these creepy medications are real people, not pawns in some propaganda war. I for one, think your comment should be deleted as innappropriate!

  • Sera:

    Excellent blog as always.

    I want to share with you that my community of Eugene, Oregon is taking a very, positive pro-active approach to the problem of ‘sleepless in Seattle’ whereby it’s illegal to sleep or go to the bathroom if one is unhoused. This has profound ramifications on many levels.

    Cities are loathe to host unsanctioned campgrounds because they historically have incubated crime against the most vulnerable, especially people discharged from the hospital, the disabled, women fleeing domestic abuse, transgender/gay individuals, and blatant disregard for the environment, thus reinforcing stereotypes about the unhoused which leads to a chronic cycle of ‘Not in My Backyard’ (NIMBY)

    Occupy Eugene, a local project following in the footsteps of Occupy Wall Street, had in influx of unhoused individuals who were facing a lot of emotional and mental challenges. Some had very few skills in living successfully in a community, including encampments due to living for years, sometimes decades on the margins of society. Some occupiers were in and out of crisis and this had a tendency to drain the energy of Occupiers. But then, a beautiful thing happened: cross fertilization. Psychiatric survivors, chronically homeless individuals, individuals struggling with addiction or mental/emotional issues made it clear that most of the barriers they were facing were the same social injustices being fought by Occupy leaders. Occupiers thereby couldn’t turn their back from the need to walk the talk, exhibit inclusivity and foster communication between the privileged (many Occupy leaders are privileged) and the unprivileged. A tall order.

    Occupiers collaborated with emerging leaders of the unhoused communities with the result that problems faced by unhoused became increasingly articulated in such a way that they could be presented effectively to the media, beaurocratic housing authorities, citizen task forces, municipal government leaders, etc.

    At first, occupiers split into several action committees, from which no less than three distinctly different non profit organizations sprang up, each offering distinctly different but effective solutions some of which are now national models.

    If folks think that Occupy Wall Street just withered away, you are wrong! It morphed into different interesting directions. I wish I had more time to present some of the interesting projects and directions here but since this article focuses mainly on homeless, here are some of the concrete organizations that sprang up in our community to deal with homelessness

    1) Community Supported Shelters

    (based on the Housing First principles and creating SANCTIONED encampments in which there are heaters, places to cook, security services, garbage and waste disposal (bathroom) services paid for by philanthropy and partnership with city government, private/public utilities, etc.)

    2) Square One Villages

    Solutions Through Tiny Houses Based on the Asset Development Solution to Poverty (such as Habitat for Humanity but featuring a much lower $$ up front investment threshold, catering to single folks, and dedicated to changing archaic city building codes and overthrowing NIMBY)

    And finally, my personal favorite:

    3) Nightingale Public Advocacy Collective

    A model recognizing that it has become illegal to camp, thus it is illegal to exist. They provide free legal aid to those who are cited for illegal camping (aka existing) and they work to overthrow statutes and laws making it illegal to camp.

    This interesting collective split into another interesting project which has the potential to promote some of the principles of Sancturary promoted by Dr. Mosher through the Soteria movement:

    Nightingale Health Sanctuary

    Recentlly, I worked with an attorney to write a grant to fund no less than forty peer counselors to live and work at these encampments.

    Much has been learned along the way. I encourage any readers at this blog to check out the innovative projects in your community that are working to solve the inequities leading to houselessness and give generously of your time and treasure!!

  • This story is a great illustration of why peer support is one of the best, most underdeveloped resources we have. Lived experience and being on the sharp end of the needle is likely to make a person kinder, more compassionate, more open minded, and in favor of choice and alternatives. But not always, The only individual I ever met who said something unkind about people with lived experience was an individual who was open about her bi-polar diagnosis. She had a website, and ran a thriving business selling several self help books on finding the right medication, coming to terms with having a disease, living successfully with bi-polar, etc. I was amazed at the primacy of the role that medication plays in her website and literature until she disclosed that she had received a fellowship from Eli Lilly to launch her ‘educational’ business and it all made sense. Does anyone know about this kind of individual astro turfing by big Pharma? I’ve seen a lot of poor quality books on the topic of mental illness selling on Amazon and I’ve had other parents give me books on bi-polar that were absolutely AWFUL and I suspect that this type of subsidizing of people telling their personal story, as long as it is consistent with the disease model narrative is really common. Anyway, she was on the board of a status quo mental health advocacy organization and as she sat across from me at a conference she told me that when people refuse to stay on their meds, they would go and do something crazy and end up in jail. She didn’t seem to have a clue about trauma, psychiatric abuse, the trauma of being isolated, restrained, forcibly injected, institutionalized, the connection between non compliance and and adverse reactions involving psychiatric drugging, etc. Also, it is easier to tell the truth to strangers than it is to people you have to see everyday. Courageous people like you are doing more to reduce stigma than all of the Pharma funded stigma busting campaigns, town hall meetings, and mental health awareness days put together! I’ll never forget the fear on a fellow parishioner’s face when, as a volunteer, she was tasked with handing out breakfast food and coffee at our church’s weekly free breakfast for the homeless. She was absolutely terrified at being about six feet away from an individual who was talking to himself. It is possible that some people have had traumatic events with people who were in an altered state or are they just victims of stereotypical information in the media? Either way, perhaps people who are scared of madness deserve our sympathy as well as psychiatric survivors. After all, we have all been duped and victimized to a certain extent while big Pharma laughs all the way to the bank.

  • Thank you for sharing this beautiful story! I was standing in front of my craft booth when a middle aged man bragged about his Halloween costume for an upcoming party. He was going to dress as a criminally insane escapee from a lunatic asylum; a murderer complete with an axe and lots of blood. I walked up to him and asked him to please reconsider because my daughter was in a psychiatric unit and she was being chemically restrained with toxic drugs that were debilitating and life threatening. He apologized and backed away, embarrassed. Perhaps change happens one person at a time; by people like you and me, survivors and loved ones, holding our ground with the truth and hoping that your message will break down years of toxic media confabulations about madness and NAMI propoganda

  • Frank, I respectfully disagree that catatonia is a manufactured term by psychiatry. I have seen my daughter lie helpless with catatonia. It is a real condition, whatever the cause, it could be a side effect of psychiatric drugs, or a side effect of psychiatric drug withdrawal, it could due to a spiritual crisis, a trauma, a terrified mind in turmoil, it happen with or without the influence of drugs, I think there is a lot of speculation but no proof of etiology; no drug tests, no MRI’s etc. I think there are many causes but from a medical perspective if is left untreated, it can lead to death through starvation or thirst. Sure you can defecate in your bed or not take a shower for weeks or lie in a coma, but the body organs would shut down if nourishment is not administered through an IV or feeding tube. In my daughter’s case, she couldn’t even shut her eyes for a week so her eyes became glazed and she had waxy limbs, a whereby you can ‘pose’ a person, lift their hand, leg, etc. and it would stay in that position, very odd. Some psychiatric terminology is helpful to determine categories and levels of care. Fortunately, my daughter had a stunning recovery from this condition, probably for a combination of reasons: ativan (benzo’s at 4mg every four hours through an IV dro) but also and I think this is EQUALLY IMPORTANT, because in the ICU unit of a hospital, a ‘psychiatric patient is afforded with the same dignity and rights as those with heart disease and other life threatening conditions; family and friends can drop by anytime they want, bring flowers, sit by the bedside, listen to music, bring instruments, the priest can drop by with healing oil and annoint a person, people can read outloud to their loved one, as is common for peope in coma’s, etc. They can have a private room with a phone, use aromatherapy, family members have a high degree of contact and can bathe a person in bed, comb their hair, etc. This is the EXACT OPPOSITE of how patients in distress receive care in a locked back ward of a psychiatric facility. THIS IS ABSOLUTELY ONE OF THE BIGGEST PROOFS OF STIGMA BUT NAMI NEVER SAYS A WORD ABOUT THIS. THE REASON WE NOW CONSIDER PEOPLE IN DISTRESS TO BE DANGEROUS AND LOCK THEM UP IS BECAUSE OF THE EXPLOSION OF AKASTHESIA RELATED BEHAVIOR CAUSED BY MEDICATING PEOPLE IN DISTRESS WITH TRAUMA HISTORIES WITH DANGEROUS PSYCHIATRIC DRUGS THAT HAVE PARADOXICAL EFFECTS THAT WE KNOW NEXT TO NOTHING ABOUT AND THERE IS AN EXPLOSION OF AKASTHESIA RELATED VIOLENCE, HOSTILITY, AGRESSION, RESTLESSNESS, HOMOCIDE, AND SUICIDALITY AND WE DON’T KNOW WHAT TO DO ABOUT IT.

  • Frank, I have the highest respect for your work but I agree with Ron. Psychiatry happens to be the place where our society places all of its resources for those who are traumatized, spiritually hurt, discriminated against, bullied, etc. Take away psychiatry and we are left with a big vacuum. Our community and family support systems are as broken as the mental health system.

    I’m not arguing for the preservation of psychiatry based on the lack of alternatives but I’m a bit reminded of the neo conservative Republican’s efforts to ‘dismantle’ government such as the EPA and then we get situations like Flint water crisis, illustrating the gulf between neo conservative idealists/federalists and pragmatists who realize that even a flawed government may be better than anarchy.

    If psychiatry were to disappear tomorrow and only primary care physicians were in charge of refilling people’s toxic prescriptions, I’m not sure things would be better. They may even get worse. People who have been stuck in the system for years, if not decades cannot just stop their medications cold turkey and told simply: “Oops. We had it all wrong. You and your family have been duped; you are a victim of psychiatry all these years. You don’t have a mental illness after all.”

    There was never any reparations for former slaves. Why would we expect our society’s leaders to take the moral high ground as it concerns psychiatric survivors? Political activism doesn’t offer anything useful for someone with full-blown catatonia lying in a bed, unable to speak, care for herself, go to the bathroom, eat, etc. Even if the catatonia is partially or wholly due to psychiatric abuse, medical neglect, faulty nutrition, it is still a medical issue no matter how it became that way.

    There needs to be great reform in early psychosis interventions and and end to these ridiculous anti stigma campaigns, mental health awareness days, etc. and a complete dismantling of Pharmas biggest propaganda machine: National Alliance for the Mentally Ill (NAMI) but what to do with the huge population of incarcerated/criminally insane folks, group home folks, people who cannot function without a great deal of support etc. is anybody’s guess.

  • Ron, I believe that you forgot to mention a possible fourth reason to save the profession of psychiatry: to help people safely wean off harmful psychiatric medication when this is warranted.

    Psychiatrists could play an educational role by teaching people the best, most judicious use of psychiatric medication and to warn people about the side effects, while monitoring patients closely and reporting meticulously adverse events. I believe that delaying putting people on medication and having a built in ‘exit plant’ written into any treatment could also recycle some good out of the profession.

    The risks and side effects usually outweigh the advantages of staying on a psychiatric medication for life; this is what the data shows but we need to profession to become more honest on this point and retool their profession accordingly. I think medical training would be a good preparation for these roles but they would have to change the training to become ‘slow medicine’ practitioners, lower their expectation of monetary gain and change their billing practices and accept a lower status and level of authority, such as in court cases.

  • I am surprised that this report only associates Abilify with strange, impulsive behavior. My daughter has experienced bizarre impulsive behavior under the influence of at least half a dozen other court ordered ‘anti-psychotics’. Some cause behavior that is not unlike Tourettes syndrome, while others trigger a full blown case of obsessive compulsive behavior such as incessant hand-washing, counting rituals, etc. I believe that history will show that anti-psychotic drugs cause a spectrum of unrecognized symptoms that fall under the undereported category of akathesia. If you or a loved one committed a crime while under the influence of an ‘anti-psychotic’ drug, as mine did, good luck getting any justice. In Oregon, inder PSRB, if one enters a plea of ‘guilty except for insanity’ and is convicted, he crime will be viewed as confirmation of how ill you are and the judge will order you to continue to be on a court ordered cocktail of toxic drugs for up to 20 years, during which your probation officer will enforce your ‘treatment’ with the threat of going to jail, plus that person will also dictate where you can live, usually in a group home.

  • I am saddened how individuals such as Dr Fiona Godlee, seduced by money,power, and status, fail to see how deeply embedded they are in a system that puts profit above people, resulting in their dereliction of duty to protect those they are sworn to protect. I am also saddened how corporations use people’s fear of economic loss and lowered status to their advantage, effectively keeping the majority of professionals silent on the issue of corruption and false or misleading data. The pursuit of justice and truth can be a lonely, solitary road that very few are willing to embark upon.

    Thank you for exposing this false data through this restored study. I hope that you and the other authors of the restored study 329 experience peace of mind for using your education for the greater good, despite the fact that you have been subjected unfairly to a double standard.

  • Dear Will:

    My 26 year old daughter just got through a very stressful court hearing. The court does not want to grant her the option of living in the home with us, her parents, where she was conceived, delivered, and raised because my husband and I are basically pro-choice and we supported her past, failed attempts to come off neuroleptics in the past and we don’t embrace the medical ‘disease’ model of mental illness. She is going on her 12th six-month commitment (forced drugging) in six years and her fifth year of institutionalization, most of that in locked (secure) settings. Despite these circumstances she is doing remarkably well. She showed a lot of dignity today and a remarkable strength is developing in her character, even when she appears confused disorganized.

    I want to thank you and other activists and leaders for never giving up the fight. Since we started down this road with our daughter 7 years ago, we have seen signs that clinicians are slowly trying to understand the message that we have been saying all along, that conventional ‘treatment’ is harming our daughter.

    For people with dopamine superersensitivity who are very familiar with rebound psychosis and emerging tardive psychosis, TD, etc. it sometimes feels hopeless, but I can tell you fom experience that your work and the work of others like you is making a discernable difference as it concerns exposing our position to attorneys, judges, and clinicians. People are treating my daughter and us surrounding family with a little less discrimination and finally starting to show some grudging respect.

    Though we have a long hard road ahead with our daughter, I am cautiously optimistic feel that there is hope for healing and dialogue within the mental health system; maybe not the full scale revolution as called for by David Oaks but when one has fought as long and as hard as my daughter just a weekend pass can feel like a sea change. Please don’t give up on those who are locked up and forgotten.

  • This may sound crazy but I think animal spirits and plant spirits may be taking to sensitive people and when we don’t know how to listen, we go ‘crazy’. Animals are becoming extinct in large numbers; Whales, for example are killing themselves. I think you tapped into a consciousness of another being in trouble.

  • Kermit:

    This article is a gift. Thank you so much. Your description of this event sent goose pimples down my spine and almost as if I was in attendance myself, experiencing the excitement of being one of the six hundred in attendance. I am so glad that your radar was on high alert, picking up on so many important questions that were asked such as ” Why weren’t there many people of color at the conference?: ” What wisdom traditions and voices from indigenous cultures could be providing additional models for healing and restoration?” “What about other forms of language?” “Is the spoken word considered by western people to be the only form of communication available to man/humankind?” Also, there are restorative justice projects and non-violent language training projects that are accomplishing some of the same goals as Open Family Dialogue but the applications are not limited to the “mental health” field. they deal with healing with healing from racism, victims of violence, homophobia, etc. Finally, when I attended the Economics of Happiness conference in Portland last year, I found that there were many, many potential overlapping areas where the movement for justice in the mental health field overlaps with the environmental/peace/justice/occupy movements. Although many activists and leaders in those justice movements do not identify as being survivors/consumers/ex-patients, many of them are feeling overwhelmed and despairing and in need of comfort, consolation, healing, and restoration. Why should they have to wait for a personal crisis for our community to offer them mental, emotional, and personal, financial support? I highly agree with the Peter Kinderman’s remark:
    “”There’s a little niggle in the back of my mind, which is that the peer trainer element maintains a ‘them and us,’ so; you can be part of the team, but you’re labeled as a peer. And basically, there’s a very slippery slope between saying that ‘you’re a valued member of the team, and part of the value that you bring is your lived experience. And that’s very, very close to saying ‘this is a woman that’s had lived experience, unlike me.'” I too, feel that creating sharp divisions between peers and non peers creates an out for people. I believe that madness is a universal human experience and the only way for so called professional healers to make a positive impact is for them to acknowledge their darkest, most wounded aspects. Having divisions between peers and non peers is a slippery slope indeed.

  • I too, hope Dr. Moncrieff responds to Ron Unger’s valid concern. For people who have been institutionalized in and out of ‘back wards’, being forcibly medicated for many years, two years is arguably not enough time for some individuals to detox physically and psychologically from years and years of trauma causing forced treatment, stigmatization, dehumanization, marginalization, dis-empowerment, emotional suppression, and learned helplessness. For many, the internalized message of hopelessness born by years and years of being told that you have an incurable disease of the brain and the only way for you to live in society is by blunting your emotions, negating your experiences, and chemically restraining your body and soul.

    Institutionalization results in the rupturing of community and family ties and the only relationships institutionalized individuals have are with people who are paid to have relationships with them. Two years is not enough time to heal the ruptures born of isolation, form healthy relationships, find meaningful work, etc. even though these are CLEARLY the type of life affirming circumstances that reinforce positive thinking and creative problem solving, needed for NEUROPLASTICTY to take place.

    I hope that the short term nature of this study isn’t a set up for failure, used as fodder by those who benefit from the current, failed paradigm of mental health care and scoff at legitimate critics of psychiatric myths.

  • I see that individuals have a variety of emotional responses to this piece. I am angry that it took so long to convey to your doctors about the level of pain you were experiencing and identify the source (perineal nerve damage). Do you have any advise for me? I am terrified that part if not all of my daughter’s declining cognition, depersonalization, memory loss, inconsistent coherency, dissociation emotional flatness, weight gain and other symptoms are due to several neuroleptics she is court ordered to take. A previous attempt to wean her off a depot injection of a typical neuroleptic, an oral atypical neuroleptic, and a mood stabilizer ‘cold turkey’ by a nurse practitioner in a locked ward resulted in terrible akasthesia, in which she became agitated, aggressive, and assaultive. They quickly put her back on the depot typical neuroleptic at an even higher dose, augmenting it with another typical neuroleptic. When we, the parents, express our concerns as diplomatically as possible, we are painted as ‘disruptive’ and ‘in denial’. This nonsense about our being ‘in denial’ made it into a ridiculous court document that severely limits her ability to live at home in a safe and supportive environment while seeking alternative treatments, even though she has expressed this desire for the better part of the last two years. I’m afraid my daughter is caught in a catch 22 and there are no supports to help individuals safely wean off these dependency forming meds.

  • Mathew, your story has diminished my capacity to form words.

    The world is a better place since I read this.
    I can’t wait to hear more from about your work with people who are experiencing a range of mental and emotional issues, including the psychological toll caused by physical pain. My friend David Oak taught me about the importance of a cross disabilities dialogue and I can only hope that you will continue to make your voice heard on this site.

  • Well stated Steve! I appreciate your judicious use of the word sh*t because if one has a loved one in the mental health system, one has to deal with a huge pipeline of bull sh*t from the big Pharma marketing executives who masterminded clever marketing campaigns that dumbed down American consumers, to the lowest paid mental health worker whose entire job consists of traveling door-to-door ensuring that a patients on Assisted Outpatient Treatment (AOT) are taking their meds. Kind of like ‘Meals on Wheels’ only it’s more like ‘Pills against your Wills” If I was a compassionate, knowledgeable and curious psychiatrist I would either be angry and despairing at the depths to which our mental health system has sunk or really, really embarrassed by my profession and my colleagues’ failure to address legitimate concerns coming from more and more critics.

  • When I visit my daughter in institutions, I’m used to an infinite number of ways in which rules and restrictions designed to make life convenient for a small army of people paid to babysit are couched in terms of recovery, as if the rules and restrictions were for my daughter’s benefit not the other way around. I have a small litmus test: anything forced or coerced has nothing to do with recovery!

  • Dr. Levine:

    I am a big fan of yours. But I want to address the point you made:
    “Researcher Peter Lewinsohn found that depressed subjects judge other people’s attitudes toward them more accurately than non-depressed subjects”
    This finding doesn’t square of with my own experience of depression. When I am in a depressed state, I am more more likely to think that others are talking negatively about me behind my back even in instances where there is no evidence to prove it. I have to work hard to remember that the muffled laughter I hear in the office is as likely as not to be about something completely unrelated to me. Yes, I believe that there is some truth in your point that depressed people often see their flaws and warts more truthfully than their non-depressed counterparts but depressed individuals like me, often exaggerate or become fixated on our flaws. At times, we become obsessed with unattainable ideals of self and fail to balance truth and pragmatism.

    President Lincoln was said to be an example of a depressed individual. Perhaps his depressed temperment and ability to face ugly truths about mankind unflinchingly uniquely qualified him to lead our nation in a time of great crisis.

  • Dr. Hickey:

    First they ignore you, then they laugh at you, then they fight you, then you win.

    Mahatma Gandhi

    May those who have died from psychiatric harm or neglect, and their survivors, rest in peace. May those who are living with side effects from years of over medication, brain damage from ECT, or the psychological trauma of isolation, restraint, forced medication, and institutionalization experience complete healing and peace of mind. May those who courageously fight for justice in the mental health system realize their dream of a society in which people experiencing mental and emotional challenges are able to receive compassionate support in a dignified, truthful, and transparent manner and plot their own treatment course from a wide array of effective treatment options that ‘first do no harm.’

  • Dear Corinna:

    I’m thrilled to hear that your eye therapy is working and that you can write again! Yah! I so look forward to your writing (please post your poetry too)

    This post was so upbeat and pragmatic, it made my day. I can be pig headed and stubborn too in my own activism and your checklist of guidelines is actually very useful for preventing burn out!

    Often, my rigid views are the result of my love one’s harm in the mental health system and my anger over how few professional allies within the system are willing to go out on a limb for people like my daughter who are receiving involuntary treatment. Of the few allies (providers who don’t necessarily believe in the disease model) who may be willing to go out on a limb, their treatment fees can be prohibitively high and our insurance won’t cover their fees or they don’t want to play interference or vocalize their concerns if it would jeopardize their livelihood.

  • Renee:

    Your story will be used to reinforce and legitimize the current paradigm of mental health diagnosis and treatment, not weaken it. Psychiatrists reading your story will classify you as representing a small minority of manipulative, patients with addictive tendencies who must be weeded out to protect the interests of the majority of ‘authentic’ long suffering patients who are worthy of help.

    Your story brings up interesting points about the intersection of the addiction industry and the psychiatric industry. 12-step programs are at a crossroads TODAY. What will addiction specialists do? Will they cozy up to psychiatrists as they have done in the past continuing their tired chant of “your addiction was a form of self medicating an undiagnosed mental health disorder (nothing to do with trauma) but don’t worry because we will take you off street drugs and put you on superior, doctor prescribed drugs”?

    12-step and rehab centers are experiencing a surge of people who are became opioid dependent from their doctors, some of whom turned to street heroine when doctor shopping failed. Will the prescribing doctors be held accountable? Will the pain centers and the big Pharma marketing specialists be held accountable for the opioid epidemic? That remains to be seen. There are still some honest epidemiologists working for the government who are capable of connecting the dots. I hope they blow the whistle on this pain killer scandal.

    There is also ample data suggesting that the excessive diagnosis of ADHD and the subsequent over prescribing of ADHD stimulants (which any high school chemistry student knows is simply clean meth) may be a gateway to crack and cocaine use. This may or may not crack open (no pun intended) a small chink in psychiatry’s seemingly impenetrable armor.

    I urge the national leadership of the 12-step program to widen it’s criteria of addiction to include ALL psychiatric drugs if any person wishing to come off a psychiatric drug has difficulty doing so, then they should be welcome to attend 12 step programs, and be admitted into a rehab facility regardless if the pusher/supplier was wearing a white coat and had a medical degree. I urge the 12-step leadership to call for new research in this area.

    Currently, many rehab center have an in-staff psychiatrist and addicts are getting new psychiatric labels and psychiatric drug prescriptions concurrent to their addiction treatment. This is a disturbing trend, as these labels and prescriptions are not usually given as short term solutions; the labels tend to stick, stigmatize addicts even further, have the potential to cover up trauma, promote learned helplessness and lack of accountability (in direct conflict with 12-step teachings). So I urge anyone who has benefited from a 12-step program or who is employed in the addiction industry to fight this trend.

    My adult daughter is being forcibly medicated with several anti psychotics including Thorazine and Haldol (simulataneously). Her cognition is dwindling; once a very intelligent bi-lingual student who received a merit scholarship at a private prep school, she can now barely read and write when the meds are at their highest level in her bloodstream, and she sleeps sixteen hours a day. She has become ‘depersonalized’ and talks about herself in third person and has very little desire or ambition to pursue the many things that once gave her great pleasure such as dance, music, and literature. When she is non compliant and stops taking the medication cold turkey, she undergoes acute withdrawal and her ‘relapse’ is used as proof of her lack of insight caused by her disease and proof of her needing to be rehospitalized and reinstitutionalized and the entire cycle starts over again, leading to ever and ever higher doses of polypharmacy. Acute withdrawal and dopamine supersensitivity is considered to be non-existent simply because there are no funds to research it and no rehab centers to help people safely taper off anti-psychotics.

    I think your story needs to be told and I admire your courage and your personal accountability.

    Yes, people should have the right to take psychiatric medications for legitimate reasons and their stories are important too. But stories that bring psychiatry’s weaknesses and deliberate abuses to light are more important because people RARELY have difficulty obtaining psychiatric prescriptions. It is far more likely that they will have difficulty GETTING OFF psychiatric prescriptions. The stories of people who have been legitimately helped by psychiatry should not be used to cover up and de-legitamize the stories of those who want to get off psychiatric drugs but can’t because they do not have the resources to assist them in their communities.

    Those of us with adult children in the psychiatric system who are at risk of continued harm need all the allies we can get to shift the current paradigm of mental health treatment from a drug and death dealing industry to a positive, empowering and life supporting, recovery oriented system. As you progress through your profession and see clients, please please don’t forget about the lost souls who have the titles of ‘severe persistent mental illness’ imposed upon them as a rational for forced drugging. Those people too, have rights and deserve to be heard.

  • Dr. Olfman:

    I will be seeking your book “Drugging Our Children” even though I am coming to this movement to end psychiatric/pharma corruption from the perspective of the mother of a young adult child, not a minor. (Most books about drugging children are tantalizing to parents of adult psychiatric survivors until the parent realizes that nearly every book and/or conversation about drugging children involves kids 18 years or under). But your tie-in to schizophrenia and, genetic research/left-right brain differences makes your knowledge about drugging children relevant to psychiatric survivors of all ages as well as their family members and gives a marvelous springboard to reset the dialogue about the importance of what kind of avenues of mental health research are most promising and how to get them funded.

    This was an excellent article describing the difference between the left and right brain hemispheres. I got a lot out of it. We need more information like this for lay people and parents. One of the way that psychiatrists bamboozle parents like me into labeling and drugging our children without first seeking less harmful alternative ways to deal with behavior issues, is because they speak ‘scientifically’ from the left hemisphere with such certainty about our children and their certainty, is itself, comforting for parents in distress, and I would even venture, this certainty itself has a placebo effect in conjunction with pills that can get a disturbed family unit down the road a couple of miles in terms of functionality and stability.

    But then, the day of reckoning comes; when families wake up to the cyclical and chronic nature of iatrogenic harm. Then, if a family member’s distress has been compounded by iatrogenic harm, they must research on their own for remedies for iatrogenic/therapeutic harm, even as they deal with playing sleuth for the original harm/trauma, all the while leaning two new languages simultaneously. They go out and hunt for alternative models of healing and recovery, learning the language of recovery. Then, they must become fluent in the old, dying language of psychiatry in order to help a loved one avoid further harm, even if the parent-child bond has been harmed because the parent was the one who brokered a relationship, so to speak, between the child and the psychiatric system. In other words, the parent is desperately trying to learn and apply a recovery model of care to one’s family by seeking information from the diagnosed one without being intrusive to her privacy or have her disclose information at a faster rate than she wants, while being her memory keeper and feeding her very real feedback about iatrogenic harm while trying to avoid carefully invalidating her progress, even if one is suspicious that the progress may be largely fictitious advances that patients are apt to make when they get sick of being hospitalized enough that they force themselves to parrot back information that therapists/psychiatrists want to hear or or modify their behavior enough to get a free pass outdoors. Many of us parents know the different between superficial change and deep change in our children, but because many of us are leary of the mental health system we often triangulate with our children and shield workers/providers in the system from certain information about our children’s ‘negative’ behavior’ so as to avoid having them be harmed even more by the system.

    Many of us parents are intimidated by the glamour of people in white coats who are highly educated.

    Once, one gains knowledge into the tenuous scientific foundations upon which psychiatry and all of its human rights violations are built, one realizes that one must become confident and proficient in psycho babble and psychiatric pdeudo science to present a counter argument to the labeling and forced drugging/institutionalization of a beloved adult child. Not only that, but one must learn to deal with some of the most arrogant people imaginable, individuals who are medical school graduates and board certified psychiatrists who have their own axe to grind since the scientific merit of their profession is being criticized by ever greater numbers of people from a variety of professions, therefore they take it out on parents who criticize a loved one’s treatment plan, even if that parent doesn’t give a whit about politics and the outcome of psychiatry, only in better outcomes for their loved ones.

    In my voyage in learning to talk back to psychiatrists and mental health care workers, I have found that there is a great need there is for plain talk from people who are highly educated as it concerns the human brain, human development, etc. NAMI is currently not filling that void for parents and their leadership tends to come from parents not from therapists. The information that NAMI spoon feeds to its members is woefully inadequate and the voices of the consumers, all but those who are NOT critical of psychiatry are woefully absent.

    Critical voices such at yours should be heard at the highest levels including policy and law making levels, but most of all, at the grassroots level as it concerns parent education. Thanks for contributing this article !

  • Dear Mr. Whitaker:

    In the article you cited, the authors state: “In the case of long-term use of antipsychotic medications, new data may be needed to establish a sufficient evidence base to understand its benefit/risk balance for patients with schizophrenia”

    That statement indirectly challenges researchers to shore up their position to produce ‘new data’ to ‘establish a sufficient evidence base’. With billions of dollars at stake, sociopathic executives will motivated like never before to fabricate long term data to refute the existing data which undermines the long term use of neuroleptics.

    If I were an executive of a major pharmaceutical company, and my plan wasn’t to sell all my shareholdings, I would be calling a general meeting of all the executives of all my competitors to band together to fight any legislation that would allow transparency of data and regulatory oversight of the clinical trials, the exact opposite of what Dr. Healy is proposing. Considering the low standards of journalism in corporate owned media, long term data supporting the long term use of a number of psychiatric drugs could be fabricated and heralded in the press without a means for independent researchers to scrutinize the means by which such data was achieved.

    It seems that the broken clinical trial system and the issue of transparency is where the real battle ahead lies

  • t4nk:

    You write: “schizophrenics, like all who have been reared in dysfunctional families, usually do not have insight into the dysfunction of their families”

    My daughter is one of the exceptions to your rule. She has been diagnosed as ‘schizophrenic’ yet she seems to have more insight about our family than anyone else in our family. I value her counsel greatly because her insight is a lot more spot on than counselors who have years and years of university training.

    At times my daughter seems clairvoyant; at other times, she has the uncanny ability to expose hidden truths. She can apply logic to the most tangled up situations, liven up a conversation with a fruitful train of thought or poetical comment, and inspire very productive self reflection. Obviously, she is very equipped to light on our family dysfunctions.

    For whatever reason, she is generally unwilling or unable to couch her insight in a gentle or diplomatic fashion. This is a problem I would categorize under ‘social graces.’

    Her episodic departure from consensual reality, has left her with a legacy of ‘bluntness’ which I hope is not permanent. Her delivery as well as her timing can only lead to ‘relational suicide’ as very few friends and family members can withstand years of unsolicited advice, when it is delivered in caustic and barbed tones or dripping with contempt. And quite often, whether due to dissociation or past trauma, she directs the right message at the wrong person or the wrong message at the right person.

    So, she has the insight but not the means to deliver the insight in such a way as to be an effective agent of change or as Carnegie would say, ‘win friends and influence people’

  • The_cat:

    Please refrain from stereotyping teachers with a broad brush by calling them “lazy”. Three of my colleagues in Rethinking Psychiatry are current or retired/former school teachers. They get it. They understand the epidemic of bogus diagnoses and the role of advertising and big Pharma influences on this epidemic of labeling and drugging children. The last thing I would call my colleagues is ‘lazy’. Until you have walked in their shoes and had to manage a class of forty children, many of whom arrive to class, unprepared, undernourished, under-loved, etc. and been faced with marching orders to ‘teach to the test’ you don’t have a right to blame teachers for this shameful epidemic. There is enough blame to go around. Words hurt. Please use caution with your words. My friend Marcia, who founded Rethinking Psychiatry, cut her community organizing teeth in the teacher’s union, in Portland, Oregon which plays a vital role in sticking up for the dignity and rights of teachers, many of whom are getting a lot of society’s problems dumped in their laps. I think the same is true any others in ‘helping professions’. Tnese kind of hurtful devisive words are preventing us from finding overlapping values and achieving unity within our movement. Teachers in general do incredible work and they have a shit load of challenges to deal with without being called lazy.

  • I received the most dispirited comment on Facebook to a comment I made.

    This post is from Debbie Elkins, who I assume is a peer counselor. The thread is located at:

    She states:

    “I have work with individuals and family members who suffers from mental illness, and making them feel ostracized because they take medication is a major set back for them. In my experience many individuals go into crisis when they go off medications. They quit taking medication because others stereo type them based on their taking of medications. Why not treat those who need help like individuals. Allow these individuals to have do whatever it takes for them as individuals to overcame. There are several types of therapy used for PTSD and they do not require medication. What do you believe needs to be done for those who are in mental crisis. How do we protect those in crisis and their families who care for them. Have you ever read “I Am Adam Lanza’s Mother’ ?”

    Why does someone who purports to work with ‘mentally ill’ people and who therefore should know better that people don’t quit medication because they are shamed into stopping medication! They stop medication if the side effects are unendurable; they stop medications if it takes away their personality, drive, spirit, ambition, creativity, sexual functions. Lord, does anyone have a stock answer to this?

  • Nurses can have a huge impact on an individuals mental wellness. How a service is delivered is critical but even the kindest nurse in the world can not mitigate the harm and impact of conventional practices such as forcing patients to the ground and injecting them by force, what many call needle rape. Until nurses who are in the trenches and see the harmful effects of involuntary treatment stand up in solidarity against restraint, seclusion, institutionalization, and forced injection, the rest is window dressing.

  • Dear Jennifer:

    “What actually helps is to touch and be touched, hold and be held” Thank you for these powerful words which touch something in me. I too am struggling with grief after losing my older sister this August and my mother three years ago. My daughter is still locked up in a psych facility and I miss being able to get insight and hugs from two principal women in my life during this crazy-making journey of having a loved one in the mental health system. Thankfully, spirit sisters have partially filled the emptiness (emphasis on ‘partially’) Like you, I dress everyday. I guess its important to keep showing up to life. May you complete your doctoral degree and find a way to put it to good use next year. The northwest would welcome you and yes the weather here isn’t nearly as cold as Baltimore. Meanwhile, I hope you keep warm and to find some small joy each and every day this winter.

  • We need footage inside a psychiatric facility so people could see the terror and rage experienced by patients who are tackled by half a dozen workers and forcibly injected. We need footage of the terror felt by people who are under involuntary ‘holds’ separated from their friends and family members, stripped of their clothes and belongings and put in isolation cells, strapped under five point restraints. To obtain video of such instances you could be charged with violating someone’s civil liberties under the guise of privacy rules. So one would be exposing oneself to a lawsuit simply to show the public what goes on in these places.

  • Dr Steingard:

    Thank you for this sobering and insightful piece. My dad gleefully called me when the article broke in the NYT, exclaiming: “This validates what you have been saying about pumping kids full of meds!” I didn’t share his enthusiasm, however and sure enough, others raised red flags about the article. Now, with your sobering piece, my heart is heavier than ever. It there any reason to be optimistic? Since the seventies when Dr. Mosher failed to get any major coverage for his early Soteria research, it has been clear that non Pharma approaches to psychosis will never receive a fair trial in the US, let alone be covered in the media. Big Pharma will always dictate the flow of research dollars as well as information. Forty percent of all news is written by public relations employees who work for large corporations. I am devastated by this reality.

    On another point, I thought the RAISE study was funded by the Robert Woods Foundation or was this just EASA? Where does EASA fit in? I would trust the RWF funded studies more than I would the funders you mentioned in this piece. Foudations have less invested in the outcomes of the studies.

    The only solution is philanthropy. Anyone know Warren Buffet or Bill Gates? We have to raise billions for independent scientific research. It’s the only way that that we can fight this colossal corporate juggernaut. Still, some say there is enough evidence to change clinical practice today. It’s just that the media and NAMI is controlling what consumers know about mental health.

  • s1w2f3:

    I respectfully disagree that the solution to this malady is an easy one. There are no AA type programs, no support groups, and no professionals willing to work with people like my daughter who experience altered or extreme states, when her stated, consistent desire is to safely wean herself off neuroleptics and use alternative pathways to healing. When she has done so in the past, she did so cold turkey without the support of the mental health workers where she was living. Those people are not trained to help an individual wean off safely. No one is. We parents are trying to learn everything we can on the subject, but often the few trainings are expensive and out of state. Regardless, we as parents we are shut out of the treatment team meetings, especially when she is experiencing an extreme state and our county has claimed in writing, that we ‘impeded’ her ‘treatment’ in the past, simply for honoring our daughter’s stated preferences On the contrary the people who are paid to keep her ‘safe’–code for keeping her on her meds to avoid liability for their funding and to keep the neighbors safe from witnessing bizarre scenes—because the only times when she engaged in unsafe behaviors were when she ran away out of desperation and became disoriented on the streets—were grossly unprepared to deal with her behavior off the meds and her behavior was prematurely deemed as a relapse whereupon they would routinely wash their hands of her by sending her to the ER where they would either patch her up with higher levels of drugs which became permanent more toxic cocktails, or send her to the state hospital for a higher level of care which, for some families, is akin to putting more stones on the ‘witch’ with the only difference is you have to swap out the word ‘guilty of witchcraft’ with ‘persistently, severely ill’ and agree with the sentiments and language used in discharge plan such as staying on the meds indefinitely with no language included about the possibility of going off them ever and no planning for such circumstances.

    Situations like this are more common than our society is willing to admit and this is not a simple problem to remedy. We, as a nation, have no long term public policies for weaning people off years of psychiatric drugging. We will nibble around the edges of this widespread problem in the presidential debates as the epidemic of prescription drug related deaths has finally become too big for industry to hide, and clinical practices may gradually change to avoid public embarrassment of those in the medical helping professions who don’t want their legacies and livelihood to be tarnished but those who experience extreme states that is often indistinguishable from PTSD from forced/coerced treatment which is potentially aggravated and/or compounded by neuroleptic drugging will not be included in any remedial discussions and their voices will not be heard because of the fear that Ron Unger describes in this post. ‘Nothing about us without us’ is a dream and not practiced. People addicted to benzos and painkillers may get their voices heard and have their ‘day in court’ but not my daughter, at least not in this climate of fear. So, this is not easy and why i posted.

  • Dion:

    Nice point about the need for more drug naive comparisons. Did you add to that more long term studies in general? This would clearly raise the bar of scientific legitimacy a lot higher, especially when the results are likely to show the achilles heel of the psychiatric industry that longer studies do not tend to support the efficacy of long term neuroleptic use.

    The RAISE study is a good beginning and I would like to see the RAISE study result in new standards for ‘first timers’ but please done forget that we need funding also to research how to safely wean people off harmful neuroleptics, especially for people who have been in the system a long time who are branded with the scarlet letter ‘non compliant’ and ‘treatment resistant’ Let’s not throw those people under the bus in pursuit of funding for studies involving people who have had the good fortune to be ‘drug naive’

    Many of us have loved ones who were never given the chance to be ‘drug naive’.

    How about studies for ‘drug damaged’?

  • BPTransformation,

    Even if you are right about the ‘small’ number of people who are institutionalized like my daughter, dialogue for non institutionalized individuals is still critical for people like my daughter. The lack of it makes it more likely that my daughter will continue to get unfairly locked up and traumatized by her ongoing ‘treatment.’

    Many psychiatric survivors who enjoy full and meaningful lives and become emancipated from the mental health system, choose to stay in the closet about their psychiatric history. They rarely return to the treatment provider(s) who did more harm than good to say: “See, I am living the good life you thought I could never achieve and I achieved this despite the harmful diagnosis and ‘treatment’ you forced on me (or coerced or shamed me to accept).

    As a result, the only individuals who are seen by treatment providers are people in crisis, people they treated who relapse and cycle in and out of the system. They develop a skewed perception of the possibility of recovery and the impact of their harmful treatments because they don’t have the living proof except a small number of peer workers they may be fortunate enough to have on staff as their ‘colleagues’ (assuming that the peer workers are not afraid to say what they really think to the highest ranking staff members that they work with).

    Thus it less likely that the treatment providers will listen to outlying parents like me who are branded as hysterical or ‘in total denial’ about my daughter’s diagnosis and treatment. We are pathologized with the same broad brush strokes as our loved one who is trapped in the system.

    Because the very people who are living proof that love, friendship, hope, good nutrition, stable housing, personal empowerment etc, (as opposed to label and lock up) is what constitutes mental and emotional wellness.

    Perhaps we could have truth and reconciliation committees and convince mainstream treatment providers to participate in order to hear survivors tell their stories. It will not be easy to get mainstream treatment providers to participate. But we should follow David Oak’s example by trying and never giving up.

    These human rights violations routinely occur in the shadows of institutions when there is no light exposing them to the public and no oversight. We, the public are the oversight. What I appreciate about David Oaks is that in forty years he never once gave up trying to keep this dialogue going forward and it is bearing fruit even if it the revolution in mental health isn’t happening as quickly as I would wish.