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Well written. Good job.
This pandemic has been a great relief for my 10 year old grandson. The lowering of academic expectations and no fear of school violence has greatly relieved his school related anxiety.
the only group I want to be a part of involving medical doctors and social workers would be a group dedicated to restorative justice. THey need to listen to survivors and allow us to have our day to be listened to.
This is all very well and good but medical doctors do not want to participate in groups. and social workers, when they do participate in groups, they want to be in charge of us and run the whole show. Not counting one doctor who does not keep up her prescribing license, i do not currently know any doctors who I personally trust enough to tell them the truth about how I feel. I generally avoid going to see doctors because I am afraid of their power to harm. I only know one social worker who is not bossy or judgmental. One social worker chided me for insisting that my daughter’s behavior was being driven by the toxic drugs and the lack of ability to go outside and she cut me off from contact with my daughter. I would love to be in groups involving professionals, but how can I? My heart has been broken and I feel afraid to be in the same room as them
This is a facinating review. Thanks, I will try and locate the source. I think that the field of psychiatry has moved in absolutely the opposite direction of facilitated communication for people like my daughter whose distress is go great, that her personality fragmented into different voices. One may argue that people’s developmental trajectory is halted/impeded during childhood through faulty parenting, which studies show, have an enormous influence on the mental wellness of individuals. Whatever environmental factors that contributed to a person’s anxiety, depression, or ‘psychosis’ leading them to seek psychiatric interventions, often voluntarily, at first, are nearly NEVER addressed by psychiatry.
In my daughter’s case, psychiatric treatment had the effect of suppress all of her communication, sometimes reducing her to catatonic ‘mutism’ by disabling her brain, impairing the cognitive functions wshe needs to form basic thoughts and receive/process linguistic information. There is simply no roadmap for restoring communication after one’s voice has been suppressed on such a deep level . Using the failed drug model to heal psychiatric oppression is like asking the fox to bring back a chicken to the henhouse after the fox has been carrying it by the throat for miles and miles. It is no wonder that people want to abolish psychiatry.
My heart is with the abolishionists but my brain and my practical side is with the reformists. Those of us with loved ones stuck on harmful psych drugs have to deal with mental health professionals on a monthly basis. At this point, all my family can look forward to is to mitigate the harm psychiatry does to my daughter and keep her from getting killed by the deadly toxic drugs. Cold turkey withdrawal leads many to a no-win situation.
Dear Mr. McNeill:
My heart goes out to you for the loss of your incredible son. Please accept my sincere condolences. I wanted to express my wonder and gratitude for your courage to go through your son’s medical records and piece together what happened. Doing this kind of post-mortem detective work must be painful, grueling work for loved ones. I personally know only two parents who did that. One gave a lecture on TedTalks, the other, an attorney who blogs on this site, started a non profit organization to help young adults avoid involuntary treatment or CTO’s as they call it where you are from.
The shame, anger, sorry, and all of the other emotions that make it nearly impossible for parents and other loved ones to look at the failed drug model and name the institutional betrayal and corruption, and downright evil that it represents canmake it very tempting to simply stick one’s head in the sand and suffer in silence for the remainder of your years on this planet.
I am grateful for your decision to be out of the closet as it concerns your grief and anger. I hope it gives you some semblance of peace knowing that your story may help another young adult avoid what your son experienced.
I know other parents whose children (after death) continue to inspire them to seek justice and I hope you won’t stop speaking out. I believe Abraham is shining through you and your voice. I have a young adult ‘stuck’ in the mental health system after years of being forcibly drugged and institutionalized. If you ever need someone to talk to, don’t hesitate to write to me. My name is Sarah and my email is [email protected]
Oldhead–have you read Ron Bassman’s history, his book, papers, etc? I dont think so. Ron is not one of the a “progressive” professionals you describe as unfit to lead “our” movement. He is a survivor of institutionalization, insulin shock ‘treatments’, ECT, forced Thorazine injections, and a diagnosis of schizophrenia. He went on to get his doctoral degree and start a private therapy practice to help other survivors. He was a part of the “Highland 40” and other historical milestones by psychiatric survivors. He has undoubtedly done a great deal more than the handful of people who make it a full time career to write comments in an echo chamber. As a mother of a psychiatric survivor, I am tremendously grateful to MindFreedom for the practical help they offer to survivors and family members
Being ‘ghosted’ is useful term. It aptly describes how society treats many of us who seeking justice or a modicum of understanding for past harm to ourselves or a loved one.
I had a friend once complain that when we got together, I appeared t be obsessed over my daughter. I’ve heard the same thing reality for grieving family members who are told to ‘get on with their lives.’ At the time she made this complaint, my daughter was constantly under siege by the mental health system and once, she came within inches of losing her life to overmedication while being institutionalized against her will. Had my daughter been kidnapped in a foreign country by terrorists and held hostage for years and years, if under those circumstance I and my husband had to track our daughter down and come up with a hefty ransom and work through the embassy to get her back, I’m sure my friend would have drawn a different conclusion about my so-called ‘obsession’ People are not prepared to accept some people’s pain.
I honor you O.O. for the honesty with which you describe your social situation challenges and I hope that you will participate in many future town hall meetings
Being employed either as a wage earner or an entrepreneur need not be divorced from a person’s ability to find purpose and meaning. The two are not mutually exclusive or at odds with one another. The missing element that young adults are lacking is ‘vocational discernment.’
Vocational discernment as practiced by the Catholic Church is spiritually focused and not ‘market’ focused (i.e. obsessed with the highest wages that society will reward you for your skills and aptitudes) Some kind of spin-off of this approach, as opposed to vocational rehabilitation, a loathsome segway into repetitive and meaningless work—would be helpful as well as safety nets for young or elders getting re-integrated after a protracted crisis or period of institutionalization– a form of universal income or at the very least, health care coverage while they explore creative options or public service options
James, this is very disturbing, moreover because you were referred to this harmful ‘treatment’ by a primary treatment physician. Huge disconnect from someone who is supposed to follow an ‘evidence based’ model of care. It is critical that your doctors considers the evidence you present with your body before he refers more unwitting victims to this barbaric ‘treatment!’
Recently, I received an advertisement from a TMS provider in Eugene, Oregon, asking our organization to help him ‘advertise’ this ‘groundbreaking’ new treatment to psych survivors. My response was shock. Didn’t he read our organization’s website? My response was to write a single page letter, sending it to the TMS provider. I had hoped to get a dialogue going, maybe a face to face meeting. No such luck. Tellingly, I never received a response even though his office was only blocks from my office.
How would you suggest educating primary care physicians about the danger of this ‘treatment’? Could we wage a letter writing campaign targeting your treatment provider? Please feel free to write to me at [email protected].
How many providers of TMS are there in the Pacific Northwest. With your background in computer science, perhaps we could wage a smart campaign on social media.
I am concerned that as more and more of the data about the harm of psychiatric drugs is exposed, new, even worse ‘novel’ treatment will strive for ‘market share’. I can imagine the cognitive dissonance that will follow as TMS providers invest tons of money in this new technology hoping to win many new patients.
Since both my son and husband experience tinnitus, both military related, and my husband experiences hearing loss, and Menniere’s disease to boot, I understand the horrific ramifications of hearing loss and vertigo that you are experiencing due to this awful ‘treatment’.
My son’s only relief from his tinnitus is playing the harp and the violin. He finds tones and chords that match or are in ‘harmony’ with the exact vibrational pitches (Hertz) of his particular tinnitus and cancels out the annoying sound at least once daily. He also runs a fan at night when his tinnitus bothers him the most. This white noise is helpful. My husband experiences tinnitus periodically, often related to changes in the barometric pressure and unfortunately, must resort to sleeping pills when it is very bad. Vertigo and hearing loss are constantly dogging my husband; it is hard enough for my husband to bear but he is seventy-two years old, is retired, and finds great solace in nature and solitude. I can’t imagine how it must be to be in your ‘prime’ and go through this hell, as a provider. My heart goes out to you.
Have you searched for an attorney yet? I am hopeful that you will find justice and pave the way for the inevitable other casualties of this ‘miracle’ break-through ‘treatment’
Well written. Things long covered up are being exposed by this tiny virus. The cruelty is being unveiled. Hopefully, the outcome will be long needed action such as universal income replacing disability (SSDI/SSI) which are absurd because they rely on fraudulent, non-existent mental ‘diseases’ and require compliance with harmful life-long ‘treatments’. A much more humane way of supporting through difficult times would be universal income which was unthinkable until Yang brought it into the national conversation and the sensibility was crystalized because of the current crisis. I agree with you that this would lower the suicide rate. Keep writing and don’t let anyone call you naive. On the contrary, you have a lot of sense.
Very exciting. Count me in! You correctly state: “inequalities that come with ownership or authority over a physical space”
Recently, like many, I have been attending more than the usual number of Zoom meetings because its the only way for most people to meet right now. Since Coronavirus, most of the meetings have been characterized by by a sense of relief not just because people are more ready to let the veneer of professionalism drop a tad bit, after all we are supposedly in this crisis together, so people are uncommonly ready to talk about their struggles and make themselves uncharacteristically vulnerable. Seeing everyone in there home environments can have the effect of being an ‘equalizer’ when people feel more empowered in their home environments.
For survivors of forced drugging and institutionalization, the prospect of going voluntarily to a clinic for a simple med check, can be a daunting experience, even after decades of living peaceably in the community outside of an institution. Even attending a hearing voices support group can be challenging, depending on one’s past experiences.
Acquiring the etiquette of an online town hall meeting will have a learning curve but for many, it could be a way to gain trust in community again and reintegrate.
I just hope that the facilitators will make a place for people in altered states or whose boundaries need work. People who are cognitively impaired or whose personality was altered by state sanctioned torture are often said to be in a state of ‘decompensation’ or extreme disorganization’ or to have a ‘personality disorder.’ This leads to discrimination and they cannot practice reintegration, even in the very meetings that purport to exist for their benefit!
Their failure to communicate ‘normally’ is often used against them. They may be banned, furthering their frustration and isolation.
I hope that there will be a dedication to including all voices using the principles you cite.
I didn’t mean to convey hopelessness by laying out what it is like for our family as a result of my daughter’s long period of forced drugging. On the contrary, there is a lot of hope. When one wishes to paint a full picture of a particular set of challenges, one risks painting a picture of hopelessness which is not how I feel. We take every day as a gift. As one who finds out that one only has a short period left to live, we find joy in the small things and relish the tiny acts of kindness that has come to characterize our healing as a family. Even on the darkest days, there is at least one spark, one bright spot, one tiny prayer answered, one baby step, one little flicker of joy and those baby steps are not limited to the person who is the ‘center of concern’. Theya apply to everyone in our family. Like many, we are learning that what we call ‘mental illness’ doesn’t originate in a vacuum as geneticists and brain researchers would have us believe. It originates in the qualities of human connections, personal relationships and the power imbalances that exist in communities which can originate in the smallest social unit, the family. And when those flickers of insights and those baby steps occur, you can’t imagine how strong the ripples are in our family. From the outset, we decided to stick together as a family; a difficult decision. When tragedy befalls a family, often it destroys the very fabric that upholds family life. When the narratives held by family members collide, as so often happens to families under great stress, We chose to stay together, all of us wounded together. At first, we didn’t see a lot of daily benefits from that other than the economic sharing of resources. Now we are starting to see other emotional and psychological benefits. It’s not rocket science but it takes a lot of faith.
I would like to know what psychiatrists really think when they are not maintaining a professional facade. The dissident psychiatrists are the exception and not an indicator of where the profession is going. I would like to know how shrinks discuss their difficult patients in private. With contempt? compassion? consternation? Severely iatrogenically harmed patients probably consumer many of their private conversations. They rarely hold their colleagues to task for iatrogenic harm. How do they refuse to see what is front of them?
How can their training wipe out their eyes and ears? How can they chalk up every complaint by a patient, no matter how inelegantly conveyed or inarticulate to by a symptom of illness or anosognosia?
I would also like to know how they speak to colleagues in private chat rooms. Some chat rooms organized and administered by emergency care docs are very casual and I was able to follow some eye opening conversations in which they spoke of their preferred treatment (Haldol) on unruly patients with an astonishing lack of compassion. Some comments were abusive. I have overheard conversations about my loved one between docs in ER hallways that I was not intended to hear leading me to believe abusive, unprofessional conduct is commonplace. Doctors are abused in their training and residency requirements. That is why the rate of suicide among docs is so high. They continue the cycle of abuse on their patients.
Fantastic piece. Can we circulate this to journalism schools, NAMI, disability rights organizations, and dare I say, mainstream corporate media publications? It would make a great op ed piece in a zillion dailies
I applaud your accurate portrayal of the modern psychiatric hospital. I am glad you are free to write about your experiences.
You state “in some establishments, there are people who stay there for years, injected with drugs against their will, losing all hope and desire for living” Our loved one is among those “who stayed for years in institutions, injected with drugs against their will” and I am in daily contact with other mothers of people who belong in this category, in various stages of healing.
In our situation, it took one psychiatrist to admit that the system had failed our daughter miserably. He made a valiant attempt to wean her off several medications while in an institution that still greatly restricted her liberties.
The damage of institutionalization and forced drugging can be very deep and more than some families are prepared to deal with. My heart goes out to families who want to do right by a loved one but are forced to rely, almost completely on public health services, while supporting that loved one’s recovery from psychiatric harm and abuse. Though my daughter is free from living in an institution at last, a fact for which I am very glad, the challenges of keep her safe from further psychiatric harm and abuse is at times, enormous.
She cannot always state her preferences. I sometimes serve as her memory, based on what she told me in times of greater clarity. She has no psychiatric advance directive in place. It also hurts greatly to talk about advance care issues with her.
Daily living is challenging. Sometimes, rather than relishing her liberties, she regresses to the survival tactics the she acquired from years of hospitalization and forced drugging and obsesses on conformity to rules that she no longer has to obey. She is no longer comfortable in her inner most place; the cathedral of her mind was shattered by accusations of sickness and abnormality and by drugs that caused psychiatric symptoms, for which apologies were never issued. She periodically dives deeper inside herself to avoid harm, making it even harder for family members to relate to her.
Sometimes, she loses the ability to communicate. Language itself, one of the hallmarks of humanity, can be impaired by the culture of disempowerment and objectification in these institutions. Tellingly, her loss of communication is always chalked up as a symptom of her ‘illness’ never as the result of psychiatric harm and oppression.
Sometimes the drugs and shock can physically damage the part of the brain where language itself lives. This iatrogenic harm is callously referred to as a part of her original illness. Her subjective experience of being harmed in the hospital is never discussed in clinician appointments. Sometimes, she reverts to mutism. Sometimes, she uses sign language. Sometimes she is incoherent and speaks in highly symbolic styles that are difficult to decode. On a deep level, I think she has not lost hope for herself, but she has lost hope in convincing mental health professionals that the way they approach her kills hope and since her survival tactics for the last ten years have evolved mainly to cope with oppressive mental health professionals, it is frighteningly difficult for her to imagine herself in a state of full emancipation. This would require the demolition of a toolbox that took years to build and the creation of new coping skills.
Thankfully, she never justified her state sanctioned torture with any statements and/or actions that could be construed as suicidal or homicidal. she did share that her hope lay in ‘outliving the mental health system” which I interpreted as the opossum’s strategy of survival, ability to feign death until a predator loses interest. This has worked to a point.She is simultaneously thrilled that the mental health system is rapidly losing interest in her but she is also frightened.
Her ten years of being highly restricted has destroyed her social network. She was finally granted the right to live with us after years of being denied that choice but our family is no substitute for a network of friends and allies.
All of the mental health services she receives currently are ‘voluntary’. I use the term voluntary to remind folks that after years of forced drugging and institutionalization, how voluntary can it really be to pick up a monthly refill of dope that one’s brain has become habituated to? After years of being observed and talked about as a passive object in an artificial environment, she lost all hope in convincing mental health professionals of the appropriateness and feasibility of her living a ‘drug free lifestayle’ and she uses the term ‘med compliant’ on a near daily basis to justify why folks should treat her with compassion and sympathy.
Furthermore, she seemed to have lost, at least temporarily, the ability to govern even the smallest, most simplest of daily activities without a great deal of support. This is called institutionalization.
This is the most unforgiveable act of modern psychiatry, by building a pseudo-scientific foundation of lies about some people having genetic abnormalities or permanent chronic brain conditions, the stage was set for zero, non-medical non-harmful interventions for people in distress, effectively lowering the threshold for these unfortunate individuals to lose all of their civil liberties. This has a crushing effect on many sensitive and freedom loving individuals
Now, despite the plethora of survivor narratives confirmed by scientific studies, showing the harm of drugging and shocking people in distress, psychiatry has painted itself in a corner. They have chosen to dig in deeper by refusing to acknowledge that the enormity of harm by the medical model approach and what challenges this has laid at the feet of society, as survivors age out in the system.
The vast majority of folks being treated in the mental health system are suffering from potentially irreversible injuries to their brains, central nervous systems, and other organs, leading many to early graves and undignified, premature placements in nursing homes where they will inevitably be subjected to rampant medical discrimination because of their psychiatric labels/histories. The probability is that most, like my daughter will never see a full restoration of their rights, liberty, independence. They will never receive an apology or financial restitution for the reckless harm that was done to their bodies. Still, as a mother, it is my responsibility to convey optimism, not despair to my children. So, I look for the best in people. While secretly remaining a skeptic, I look for psychiatrists to take full responsibility for their harmful past actions and I imagine families and communities taking creative measures to protect their most vulnerable from further harm in the mental health system. This will require nothing less than a full scale revolution. I remain hopeful on this account.
I have resolved to remain in solidarity with my daughter and support her efforts to resist, to the greatest extent possible, those services which are delivered in a manner that diminishes, while being open to services which empower or at least do not harm. She is dependent on the system for her dope. Until there is a revolution, this culture does not support her withdrawal from harmful psychiatric drugs. We are working people of modest means, and not likely to have access to expensive private services for help in this regard, now or in the near future. Yet I hope.
Even though every fiber of my being longs to speak truth to power at every possibility, I have learned to cultivate duplicity, in order to avoid pissing off some sadistic public mental health professional who could stick a foot out in order to trip my daughter even further. So much easier to scapegoat the chronically ill, refractory, or ‘treatment resistant’ patients, than to discuss, let alone take responsibility for iatrogenic harm.
People like my daughter may never fulfill their pre-torture potential due to a combination of permanent, physical injury and the difficulty of finding mentors and therapists who are able and/or willing to make effective and consistent services available to the most psychologically and economically harmed. But as a mother, my role is to protect my family against all odds.
Our villages have been destroyed by capitalism, greed, and oppression. Psychiatry is a symptom of a far bigger threat to humanity than we ever imagined. As David Oaks declared, ‘Normal behavior is killing the planet!” Psychiatry is a form of social control that is being used to kill the most sensitive among us, often children. Our children are canaries in the coalmine. Before our little fledglings make it back to the surface with their message of ‘danger!’ psychiatry colludes with family members to kill them, all out of the best of intentions, of course. I don’t know what the future holds but the survivor movement with its history of providing authentic peer support has the most helpful road map I can think of. I hope that we can set about the rebuilding of our villages that have been destroyed with this road map.
Sam- I agree with you that without input from people with lived experience–it will be a flop. Moreover–survivors need to be involved not just in the design but also in the leadership and delivery. Why not issue a call to action for survivors/leaders/peers nationwide to flood this program with resumes and stimulate a massive migration of the most experienced and talented survivors to travel to Hollywood to ensure success?
Thank you for sharing this inspirational story. My daughter has weaned down to 25% of her lithium dosage which she was put on during a brief hospitalization caused from a cold turkey withdrawal from a daily dose of 100 mg of clozapine. She worked hard to get to that point.
When she experienced an emotional wound during withdrawal- was rehospitalized and restarted on a higher dose of clozapine as well as an additional drug (lithium). Rebound psychosis sucks! Thank you for validating my frustration!
Her shrink, once supportive of her withdrawal– then cowered into state of conformity more in alignment with his more traditional colleagues. He no longer supports withdrawal because he considers himself a young rogue in the profession and wants to have his cake and eat it too–pad his career with success cases-while avoiding risk.. He no longer sees hope for my daughters full recovery which is reflected in the diminished time he spends with her and his prescribing.
My husband adviced my daughter “fire your shrink” but when this was explored at her last appointment, my daughter’s shrink responds by saying “if you fire me, wait till you see what my colleague are like!” By bringing attention to his self-perceived tolerance for my daughter’s odd behavior–of course–his comment–whether intentional or not–put salt on our deepest dread as a family–another involuntary commitment followed by another ling year in a state mental hospital.
Can you offer some advice for family members? If a loved one is experiencing an extreme state during withdrawal coupled with PTSD from psychiatric abuse– is it better to engage knowing I may get scared and project my fear onto to my co-struggling loved one–or leave my loved one in isolation even if she is obviously suffering as evidenced by her shouting to herself or defacing her environment? My daughter is showing a lot of progress healing from emotional wounds: in her many periods of clarity I see that but on the bad days I identify with family members you described who were hyper vigilant so I dont know if I should hover-as a traumatized witness whose only function is to offer ocasional meals, clean up her house, offer rides, etc. –or walk away and disengage because she would experience greater healing in privacy?. I have no roadmap and I’m terrified to consult with mental health professionals when she is struggling. I fear they will reinforce the negative labels/messages about herself she has already internalized and reccomend dosage increases–or worse–add another drug to her cocktail. But her suffering in isolation scares me equally with lly.
My hope is my daughter can start weaning off clozapine soon but there are very few professionals who will validate our hope so we remain isolated and try to shield our daughter from psychiatry at the cost of enabling her to be dishonest. The clozapine has caused her so many side effects I cant bear to think she will be on this drug for life! Any advice you can give is greatly appreciated!
Fiachra: I hope you will blog about your experience withdrawing from psychiatric drugs in greater detail someday!
Some parents I know in the USA are seeking alternative options like the hospital described in this article because they support their loved ones desire to live a drug free lifestyle but want a safe and supportive place to optimize their loved one chances of success during the tapering process. Medical tourism may be the only solution for some families in the USA as long as psych drug withdrawal is not viewed by mainstream psychiatry as a serious option for people who have been involved in the mental health system for years.
Leah: Thank you for this great interview. Thank you Celia for the awesome description of your early years in this movement. Your work provides a shade tree for many of us who are newer to the movement.I get so discouraged at times and this interview made by day! Beautifully written! One bit of wisdom that I thought was buried in this interview was when Celia said “I think we need to get outside of us.” Would you care to elaborate on this point?
I would like to see this beautifully written piece be distributed widely and required reading for mental health clinicians. Unfortunately–as with most survivor narratives and critical studies by degree’d professionals confirming the psychological and physical harm of involuntary ‘treatment’, it will only be read by the converted and those with lived experiences of these horrors. Survivors and allies–in the words of the late, great Justin Dart–known as the father of the Americans with Disabilities Act- we must “unite and organize” to overthrow the DSM and all of the harmful ‘treatments’ to which our children and loved ones are subjected!! We have to bypass the corrupt, corporate mainstream media which trumpets the fictitious successes of the guild of psychiatry and raise public awareness of the torture that masquerades as state of the art ‘treatment’!
This is all well and good for the unborn generations but there must be a day of reckoning in which all who have harmed by the authoritarian practice of bio psychiatry must be heard and those who harmed them must be held accountable for their crimes.
Wow! I love the vision of peer advocates who are knowledgeable about legal aspects of involuntary commitment, supporting peers through the degrading hearings, shaming court attorneys to do their job, helping to identify resources for individuals seeking non-drug/non-force alternatives in their community. What a positive vision!
Wow–since there aren’t many peer support groups in my community–this sounds wonderful! Thanks for organizing this!!
Great comment Wayne!
This is a very disturbing example of the corruption of mainstream corporate media. According to Pro Publica, every major news franchise except CBS, has at least one board member who also is a Board member of a major pharmaceutical company. The Pro Public report didn’t mention the influence of medical device manufacturing, just big Pharma. Obviously the shareholders of the company developing this this medical device has some kind of major influence with CBS. Someone with excellent research skills should find out what the connection is.
You stated that Leslie was not psychotic or suicidal as the justification for her not being hospitalized but even if she was ‘psychotic’ or ‘suicidal’ (very subjective states which can vary tremendously depending on the person doing the checklist interview) there is a great deal of evidence that the hospital is still not the safest place for individuals who are in disorganized or distressed states known as ‘psychotic’ or ‘suicidal’. The hospital was never, ever safe for my 29 year old daughter who was kidnapped, restrained, forcibly injected and secluded in a hospital many, many times. This is abuse, regardless of whether the person meets your criteria for admission by being ‘psychotic’ or ‘suicidal.’
At many important junctures in my daughter’s nightmare (a decade of psychiatric oppression) she was denied the right to live at home with us her biological parents–upon discharge—because the county had documented us as being critical of psychiatry during treatment team meetings (we were eventually blacklisted from such meetings). She was always discharged to the state hospital, a group home, or another restricted facility (24-bed) even though she specifically requested several times during different years that she be allowed to live at home.
Many of our complaints had to do with her psychiatrist du jour always telling her that she could never to safely taper off medications even though all of them had horrible side effects and made her chronically ill (no one believed her or we, her parents, when we claimed that many of them actually made her MORE ‘psychotic’) and none of them were sympathetic when her court ordered drugs made her withdrawn and cognitively impaired, non-functional in terms of employment and social relationships, incontinent, diabetic, fat, lethartic, unmotivated, etc.
Every psychiatrist called as a witness at these degrading commitment hearings described her non-compliance in great detail. None of them testified as to the possibility that she was suffering from WITHDRAWAL, not a ‘return of the original disease.’ Of course, we couldn’t afford to hire an expert witness to the tune of $10,000. We were lucky if her treatment ‘team’ even informed us of the date/location of the hearing.
The non-stop psychiatric oppression and the utter lack of non-drug,non force alternatives caused a chronic seven year cycle of actute hospitalization, court commitment, restriction/disruption in state hospitals or locked 24-bed facilities or group homes, elopement, withdrawal state, disorganization, rehospitalization.
I believe that she endured the humility of 14, back-to back court commitment hearings, costing the tax payer and our private insurance company (Blue Cross) over 1.5 million dollars (conservative estimate) with nothing to show.
When they recommended that she be shocked (also by force) that was the straw that broke the camel’s back; my husband and I sought legal guardianship of our adult daughter, even though it went against every fiber of our being. We fired our attorney because he said we would lose because the state had painted us as being ‘non compliant’ parents who were critical of drugs/psychiatry.
We operated pro se. After we received guardianship of our daughter, only then was she able to live at home. She has been living at home for three years now. Some of the benefits of living at home: she has not had to beg administrators for permission to purchase and keep micronutrients, to do overnight travel to family weddings, funerals, attend overnight dance or meditation retreats, take her out of state to attend hearing voices trainings and other events organized and presented by people with lived experience.
She has a long way to go to heal from seven years of institutionalization. Ten years ago, she had a spiritual emergency complicated by recreational drug use and childhood trauma. Access to peer respites at critical times, a residency in a Soteria House during her first ‘break’, or access to Open Dialogue could have prevented ten years of unimaginable suffering and exorbitant waste of chronic service dependence, and taxpayers expense.
I hold that your profession has done more to harm to my daughter than than if a freight train had run over her body and severed her legs from her waist, by taking away her civil rights, permanently disrupting her social network, causing a catastrophic loss of personal confidence, locking her up for years in institutions where she acquired negative personality traits such as learned dependence and helplessness (years of being having an attendant go with her to public places) and most abusive of all, by violating her most sacred personhood by denying her the right to determine what goes into her body. Her very body was violated.
Even rape survivors get their ‘me too’ moment. But where is my daughter’s acknowledgement of the rape of her many forced injections? Shame on anyone who continues to profit from this abusive system.
You rightly point out many of the idiotic things that happen when clinicians follow a ‘decision tree’ or ‘prescribing algorithms’ and other one-size-fits all criteria for moving people like cattle through the chute of our ‘mental health system’ but the very foundation upon which your profession is based is on the notion that it is OK to use force and coercion when people are experiencing the worst day of their lives.
I hold that most board certified psychiatrists not only routinely violate the Hippocratic oath to ‘first do no harm’ but most have permanently destroyed the therapeutic alliance their profession purports to promote between themselves and their clients.
When psychiatrists and family members loudly claim that the system is ‘broken’ and they beg for more psychiatric beds and more funding for mental health, my eyes get as big as pinwheels. Are they asking for more violations of my daughter’s rights? I am aghast at the disconnect between physicians, what they dish out to their clients and their denial about the the level of harm they have meted out to those who are getting 100% access to mental health services, like my daughter.
You reach the correct conclusion that people, especially people who purport to help (clinicians) must take responsibility for their violence. To work within a violent mental health system that labels, locks up people who have broken no laws (often on the say so of an abusive family member), forcibly poisons and electroshocks them is supporting violence. As for other violence–such as the violence against women, children, and the planet–i am equally concerned about victims of those acts of violence but those victims actually have real advocacy working for them–broader movements funded through philanthropy, shelters, networks, and real legal and constitutional rights they can exercise. Thanks to the pseudo-scientific profession of psychiatry and pseudo-consumer advocacy groups like NAMI which promote pseudo scientific mumbo jumbo such as anagosognia my daughter is sub-human and has no rights under the law.
One way to fight back against the media is to support campaign to end direct to consumer advertising. I don’t have a figure at hand, but I wouldn’t be surprised if the amount of advertising revenue on mainstream media from big Pharma constitutes 15-20% of the advertising pie. Even the AMA is proposing and end to direct to consumer ads on TV. Australia and the US are the only counties that permit this. Another way to push back is to create and enforce stricter rules regarding board of directors. All the major news outlets save CBS have at least one board member who sits on the board of a major pharmaceutical company. So when it comes time to run a story, or debut a new miracle drug, media board members, whether consciously or not are making decisions that have to do with content and news, that directly impact an area of their lives in which they have a vested interest. This is a conflict of interest plain and simple. We need to strategize some campaigns around this. I think Ralph Nader and Pro Publica and the AMA are possible partners. Anyone?
To my knowledge, the only person who has launched a campaign in light of the Anderson Cooper gaffe has been Lauren Tenney. Anyone else planning to take action?
This article is disappointing and doesn’t deliver on its tantalizing caption “collaborative strategies” involving who? 20,000 peers employed by the mental health system who are going to collectively fire their bosses? This is not how revolutions usually happen. Re-envisioning is one thing. Action is another.
Peers working in the mental health system has the effect of reducing activism.
Dear Andrew’s mom. I would be happy to reach out to you through your website. Thank you for the link.
I posted at the source. I encourage MIA readers to post on Scientific American. I have to believe there are still publications who know the difference between rigorous studies and industry propaganda. If we can reach out to critical thinkers-one by one–God willing– we will resist Darth Vadar–big Pharma and suppression of science.
All of us can learn to hold space for someone in an altered state of conciousness until their needs are known and can be addressed. Most professionals and family members are in the grips of fear. Their instinct is to round up the individual who is at the center of concern like a wild horse and contain it and sit on it until it is broken.
If professionals and family members could suspend their fear long enough to cultivate curiosity-they might stop being blinded by their fear and observe subtleties and clues beneath the surface of a persons appearance and outward behavior.
Somewhere–n someone’s odd behavior—even in the throes of a crisis–lies a Rosetta Stone for resolving the situation. So many visits to the ER, resulting in harmful involuntary commitment could be avoided if individuals and families had access to other, better options.
Mutuality and mutual trust are critical for communication. Involuntary commitment destroys both.
My daughter at times cannot comprhend or speak in English-her birth language. This became more pronounced after a period of catatonia followed by ten years of institutionalization. Her inability to communicate is trauma based and complicated by years of forced drugging. Drug induced dissociation, depersonalization, as well as drug induced cognitive deficits that can mimic aphasia, dementia, etc. are episodic and dynamic–not a static. While inconvenient-it is rarely dangerous and certainly non-violent.
Symbolism and non verbal communication can fill the gap when spoken language doesn’t work. Ironically- so-called professionals by training are not aware of other forms of communication other than spoken language. It is tragic that psychiatrists, in their science based training, (or pseudo science based) are starved of the very symbols that would help them them communicate with people who navigate the margins of human experience–the humanities, comparative religion, philosophy, visual arts, anthropology–this is the ocean of human experience in which our children are drifting without grounding or guidance.
Involuntary commitment teaches our children nothing except base obedience in the same way that animals are domesticated. We can condition people to conform to rules of daily conduct through involuntary commitment-but we cant teach them to communicate what their desires are–how they view the world-and how to find their innermost purpose with the base language of force
Switching to an ‘antipsychotic without an anticholinergic component” is not as easy as it sounds. Clozapine, for example, is extremely hard to get off.
Long term injectables are not metabolized uniformally. My daughter experienced roller coaster reactions while on LTI’s. Anything that diminishes control over ones drug intake is not good
Frank, you are spot on. My daughter was very non compliant and it didn’t go well for her in the long run. Additionally, my husband and I supported her non compliance and this was used to leverage our relationship with our daughter, restrict our visiting privileges, and conveniently leave us out of the loop as it regarded hearing dates/locations, important medical decisions, etc. Sadly, I have learned that it is important, when outsiders are supporting people who are on the ‘inside’ tread carefully. Yes, it would be wonderful if staff would take an oath of non violence. But that is never going to happen in the current paradigm.
Since when does food and housing were listed as ‘social risk factor?’ Give me a break. These are primary needs. You can bet your bottom dollar that people who display unusual behavior such as PTSD from past psychiatric abuse or harm, they will get discriminated against. If their medical records follow them, they cannot get on ‘regular’ low income housing lists like those operated by HUD. They must wait for ‘special’ housing for the ‘mentally ill’. Workers at food banks and overnight shelters are not trained to handle behavior that is typically labeled as ‘psychotic’ such as hearing voices or loudly talking to oneself. Lack of training and empathy in dealing with people who experience the world differently results in fear, escalation and aggression. This article is asking for hospital staff to be educated on how to make referrals that will reduce people’s ‘social risk factors’ but the medical model is the bully in the room that makes it so easy for workers in the poverty services community to disengage with their psychiatrically labeled clients, bouncing them back to the mental health system/jail system by calling 911 to quickly deal with unusual behavior that can so easily be prevented from escalating.
Thank you for sharing this excellent piece.
How many studies will it take to confirm what survivors of forced treatment have been saying for DECADES?
This is one of the best descriptions of heartbreak I have read.
Thank you for your unwavering support for survivors who have been harmed by pseudo scientific psychiatric labeling. Thank you also for your support of returning Veterans.
I highly agree with you on the need to report on mental health issues objectively without the use of DSM labels. The medical model had led to a lot of harm and oppression. I am not opposed to the use of the medical model but the default use of medical model terminology in a field as complex as mental health gives the medical model more status than it has earned with scientific merit.
I prefer the use of disclaimers because often MIA is reprinting articles from other sources. Putting quotation marks around every psychiatric label may present a huge, extra burden on editors and it may even raise copyright issues to alter quotations from other authors who are not affiliated with MIA.
I share the concerns of CatNight, Kindred Spirit, Frank Blankenship, and PacificDawn. All of them brought up really good points. But Catnight suggested a built in solution which resonates with me. Take steps to innocolate this modest initiative (17 million for ACES v.s. 5 billion in big Pharm funding is a drop in the bucket but we will take it!) lest it get swallowed up in layers of federal and state bureaucracy or co-opted by big Pharma front groups. “Policies and legislation no matter how well intentioned will far apart fast if not backed up by a system wide learning and nationwide outing of the corruption that had almost destroyed our country.” CatNight suggested a Nuremberg Trial. I doubt society is ready for that type of restorative justice but even nationwide listening sessions would be awesome if they were organized by survivors, not treatment providers, in other words, experts by experience, not experts by training. For a good model, see the wonderful ‘truth and reconcilation’ circles organized by Rethinking Psychiatry. HERE http://www.rethinkingpsychiatry.org/2017/02/05/truth-reconciliation-march-1/
So true! We helped my daughter plant a garden behind her cottage and she has been planting-watering and weeding consistently this year-and we can tell the benefits to her clarity of mind are discernible. Some of it is simple pride. Six years in the backwards-she was not only deprived of all wilderness and organic beds–there was no purpose given to the inmate-patients. Just from the savings on expensive brand name antipsychotics if we drugged people less-hospitals could use the savings to build greenhouses and beds
The blatantly racist quote cited by the author of the paper is very disturbing. It is from a senior psychiatrist and is grounds for dismissal or disciplinary action. This is a violent blatantly racist statement; it is documented from a credible source. I’m sure the author would have no reason to slander someone or use hyperbole to make a point. Therefore, wouldn’t the senior psychiatrist who is quoted as saying a ‘bomb’ should be dropped on an entire community of people of color be subject to some disciplinary action or licensing review for unprofessional conduct at the very least? I know a civil rights attorney who may have some suggestions for actions if someone could verify the facts in this paper? Logically, even without the advice of an attorney, it seems like if this psychiatrist is working for a hospital that is accredited by Medicare, then this would violate some basic civil rights standards and a grievance or human rights complaint should be lodged against this facility that could employ such a monster. I’m assuming the comments were made ‘on the clock’ and surely there are standards of professional conduct that a licensing board that this person could hold its members to.
Dear Elizabeth- im thankful your son is doing well now that he is out of the clutches of Mcpsychiatry and Mctherapy. Do you know where your sons original anxiety develooed? Sensitive, smart children face so much adversity from climate change, school drills for mass shootings, bullying, etc. Adverse drug reactions are common but they go unreported. I am the mother of a daughter who has become habituated to a powerful antipsychotic drug and traumatized by years of forced drugging in institutions. Because of the powerful lobby of big Pharma and the domination of the disease model of mental illness–no alternatives exist for people when they experience extreme states-even those that are directly linked to an adverse drug reaction. I hope your sons former psychiatrist reads this letter. I also believe that you can report his failure to report an adverse drug reaction. I urge you to stay involved and continue to tell your story. Until NAMI rejects all funding from drug companies and accurately prioritizes trauma as the number one way to combat ‘mental illnesses’ we need all dissatisfied parents to push back and demand better for our family members.
The author of this article impressed me by getting this published on Pete Earleys blog. That is surprising. In this article she question AOT and the odious Family to Family curriculum by NAMI (FtoF states clearly on the cover that it is funded by a drug company) I dont agree with her support of the clubhouse model–i think clubhouses have been co-opted by medical model practitioners with the result that they ate not friendly to people who want to organize, protest, revolutionalize, innovate, or make waves.
Thank you. This is worth memorizing so users and allies can use precise, clinically relevant language to describe the many manifestations of iatrogenic harm in front of a psychiatrist who is willing to listen.
Don, thanks for this sobering piece
. I admire your steadfast dedication to ending torture posing as ‘treatment’ Your work in this movement for decades has been a shining example for many people like me who are just beginning to learn about the issues and take action.
It seems that there is a growing darkness.
Thank God for this legal decision- perhaps other European nations will follow and then perhaps Canada and the US-if only my daughter had the law behind her when she tried to resist (futilely) and was forcibly medicated many times-she might be better today. Her rebound psychosis was not recognized and she was polydrugged to cover up the iatrogenic harm-now her brain is habituated to neurpleptics and her dad and I dont know if she can ever safely titrate off them to deal with her original emotional wounds and live an independent life-we try to remain hopeful and resist despair but these kind of protections are important to give the next generation of young people a shot at true healing.
I posted the following comment on the original Medscape article; doubt it will get published
The former editor of the New England School of Medicine resigned because she claimed that over 50% of the medical literature is junk science funded by industry.. According to ProPublica, MedScape receives HUGE funding from industries that profit from pharmceuticals and medical technology companies so I’m skeptical of everything on this site.What I would like to know is if the author would have brought attention to this major mistake without outside pressure? In other words, was her mistake outed by another scientist? At least Medscape published the retraction which probably won’t happen with the other downstream fake news articles that cited this terrible study. At least this author took responsibility for the error unlike the author of 329 the ghost written article written by SmithKline downplaying the adverse effects of paroxetine on adolescents, a study with glaring conflicts of interest which was never retracted by the journal (JAACAP) to my knowledge. The thing that slays me is even though I hate Trump, he is right. A lot of news is fake news. Everywhere gullible readers are exposed to media stories cut and pasted from PR firms press releases about miraculous new advances in neurobiology and psychiatry and most of it is JUNK. Researchers like this one give credence to claims of people like Trump. and his claims of fake news
Salimur: to stop the massive level of harm to our children, the actions we have to take are enormous.
I meant med non compliant
I am increasingly of the belief that doctors should not be able to prescribe these pills any longer and parents should not give them to their children unless they have first taken a course on the risks which is developed and/or informed 100% by psychiatric survivors. I think this would go a long way in solving the problem of reckless prescribing and failure to conduct research that could inform clinical practices as it concerns de-prescribing.
I would go even further and require that prescribers and parents be legally REQUIRED take a ‘sample’ of what they are dishing out. I took one of my son’s pills once and it took me three days to recover cognitively and physically. Taking even a small bit of another’s prescription medication may be illegal but I did it to find out what it would do to my brain and it reinforced in me the belief that psychiatry lies and kills and it had the effect of radicalizing me. I now feel that our society urgently needs to correct the power imbalance between doctors and patients before more lives are lost.
Thankfully, my son withdrew cold turkey from Seroqel without any major withdrawal difficulties (he had only been on it for one month during a crisis) and with the help of yoga, friendship, cross fit, ballet, kickboxing, free counseling from the Returning Veterans Project, and hobbies such as harp playing he is med free and gainfully employed.
Now our family is focusing on supporting our others adult child’s withdrawal from Clozoril.
How can one find an expert in tardive dyskinisia? I don’t think she has tardive psychosis, thankfully. She still experiences long periods of daily clarity that we build on. But several years of clozoril usage have made a noticeable cognitive impairment around her focus and memory which prohibit her from successfully making goals, and following through. It is hard for her to hold onto a thought longer than a minute. David Oaks described Thorazine as a ‘wrecking ball to the cathedral of his mind’ and this comes close to describing what I observe in her.
I think many younger survivors are starting to articulate a widespread common drug induced impairment that has often been blamed on the progressive nature of ‘schizophrenia’, inability to simply THINK. Executive functioning is a spectrum of different functions such as focus, memory, and organizing. These functions are impaired by long term neuroleptic use, I’m convinced. Just as there is a lack of research around withdrawal, there is a lack of research around cognitive impairments that are drug induced. Can you refer us to any studies where this link is established?
I also believe that my daughter is experiencing a less common form of dyskinisia that affects her respiratory tract so that many times, within about twenty minutes of taking her daily dose (at night) she feels that she is suffocating. It is very scary and unpleasant and causes her to panic. It is scary side effects like this that caused her to be med compliant on many occasions which gave the state it rational to lock her up for years and drug her by force.
I believe that past trauma of psychiatric interventions coupled with cognitive impairment impacts her ability to talk cogently and honestly about side effects with her prescriber and I am afraid to get involved with her psychiatrist for several reasons:
1) intruding on her privacy and independence.
2) My own past failed attempts to influence a prescriber to de-prescribe which sometimes backfired
3) The fear that the prescriber will simply give her another med to counter the side effects, the prescription cascade, so to speak
4) Being forbidden to be a part of her life due to ‘parental lack of insight’
Any suggestions as to an expert that we could take her to to sort out the side effects from the trauma? Especially someone who is an expert on dyskinisia?
This article is consistent with the work of Dr. Pamela Wible. When I complained to Dr. Wible about psychiatric abuse, she claimed that psychiatric abuse is a part of the cycle of abuse starting with the way medical students are treated. While I sympathize with doctors who have their hands tied and cannot adequately treat their patients in the current system, this article takes the issue to a new level by claiming that doctors who must work in a profit driven business model are ‘morally injured’. I am skeptical of portraying doctors as victims. Studies show that most doctors enter the field to enjoy the good life. Check. When my dad was the Dean of Students at Portland State University in the seventies, he risked everything to supported his student’s first amendment right to protest the Vietnam War for which he was later blacklisted/dismissed. Our family experienced poverty after that but I have only admiration for my dad’s moral stand. My uncle, a physician, volunteered on the weekend to treat patients for free at a clinic founded by the Black Panthers for which his phone was tapped, even though my uncle was a pacifist Quaker and didn’t have a violent bone in his body. I think that doctors suffer less from moral ‘injury’ and more from lack of moral backbone.
I am angered by Dr. Horowitz’disclosure of his ephiphany as it relates to the challenges of withdrawing from psych drugs. He mentions that most of his information on the subject was from medical school training and was not helpful.Are pre med students not taught to think critically? Dont young medical students ever question why their training is not informed by service recipients- especially in the practice of psychiatry? Dont they have any common sense thinking skills that allows them to smell the corruption? Good Lord- what a bunch of zombies med students are becoming! No wonder the doctor suicide rate is exploding: disconnection-putting career and financial security above the interests of their own and their patients spiritual mental physical and emotional health-the lack of moral compass to speak out against the colonization of health care by industrial interests.
Well stated Frank!
By the way, I should mention what a wonderful person my daughter is! She doesn’t give up and just the fact that she gets up every day and tries to live life on her own terms, despite the years of psychiatric abuse she has endured is a tribute to her wonderful spirit and grit. She is my teacher everyday and I just hope that someday, her tenacity and optimism will be rewarded with an opportunity to enjoy regular, genuine conversations with a psychiatrist, one who is open minded, compassionate, not someone with an eye on the clock and a pipeline of patients outside the door, someone who will treat her like a human being with strengths and abilities and take professional risks to stand in solidarity with her desire to live a med free existence
How do I feel about advocating for my loved one’s right to taper off her medications with her psychiatrist? Terrified. If a loved one has been involuntarily committed, forcibly drugged, and institutionalized for nearly a decade, the psychiatrist has all the power in that situation. He/She has the power to fire your loved one. That means your loved one will have her drug supply disrupted. Since her brain is highly habituated to the poisonous cocktail she has been taking for years, disruption of your loved one’s drug supply puts him/her at high risk of a rebound psychosis which is commonly called ‘relapse’ by clinicians.
Your loved one will end up in a hospital where every progress he/she has made deprogramming the internalized messages of hopelessness fed to people in locked wards, will be set back yet again. Any progress he/she has made tapering down in cooperation with his/her shrink, will be reversed. At the hospital, they will once again be drugged to the gills.
You must perform and instruct your loved one to perform and get through the med check interview by being as cogent as possible, cheerful, on point, etc.
You and your loved one must find, at your own expense the one in a thousand psychiatrist who is open to the possibility that your loved one’s best shot at long term recovery may be attainable only by getting off meds. This search can take years. This person must be in private practice and willing to treat someone who they may consider a ‘severe’ case. Most shrinks in private practice want to treat only the worried well who have good insurance.
As a parent, I have witnessed first-hand the way that my loved has slowly deteriorated while being ‘med compliant’ but neither she nor I can open the conversation in these 20 minute med checks by ‘educating’ the psychiatrist about the psychiatric abuse and horrors that my daughter has experienced in a host of locked back wards. In twenty minutes, I can’t begin to describe to the shrink in front of us why I or my daughter have zero trust in his judgement. There is never enough time in a med check to recount the horrors that are routinely meted out with inpunity by members of his profession.
And side effects, you can’t dwell on those either. You cannot open the conversation by describing in detail the times you have held the vomit bowl for your loved one because of the clozoril, the number of times you changed the sheets because of the incontinence caused by the lithium, the neuropathic pain and the labored breathing and feeling of being choked by respiratory akasthisia. You cannot describe the cognitive damage, the memory issues, the inability to read, write, comprehend speech, the lack of focus, desire, or motivation and the chronic fatigue. They will just say you are crazy. The whole family is crazy. They are ‘anti-med.’
You cannot dwell on the side effects because to that psychiatrist, they only care about one thing, that you are not ‘floridly psychotic’ and you are not suicidal. You also don’t have dystonia or tardive dyskinisia yet! Wow, you are med compliant and you are living at home or in the community! You must be stable, therefore you are doing great! Stability is the holy grail of psychiatrists who treat the ‘SMI’ even though underlying that ‘stability’ is the reality that people labeled with ‘SMI’ who are polydrugged are only ghosts of their former selves.
Most parents of children who have been labeled ‘SMI’ know that their child is slowly being destroyed by the drugs but they are in denial, a state of mind reinforced by organizations like NAMI which programs people to believe that their children’s ‘mental illness’ is a chronic brain disease caused by faulty genes and a neurochemical imbalance and that the only way to manage ‘disease’ is by taking debilitating, poisonous drugs for life.
There is absolutely no talking to these shrinks as long as they are unwilling to support their clients in undoing the damage their colleagues have done. While there is a noticeable shift taking place, and the false chemical imbalance narrative is starting to fall apart, we with loved ones in the trenches who are still heavily drugged and holding onto life by their fingernails have to approach each and every day as if they are climbing Mount Everest. My daughter wakes up each day to climb Mount Everest, then goes to bed, only to wake up and have to start climbing Mt. Everest all over again.
I am glad this article inspired comments from people on both sides of the spectrum. Father John’s article resonated with me. If psychiatry were to disappear tomorrow as a result of track record of harming millions by falsely framing all people’s problems as biological in origin and coming up with deadly and addictive ‘treatments’ then what would fill the place of psychiatry? Cognitive behavioral practitioners belief that everyone who receives talk therapy can talk and ‘think’ their way through their problems. Integrative medical practitioners think that we could all benefit from a colon cleanse and remove the environmental toxins from our organs. Practitioners of mindfulness, think that we become more at peace with our problems through meditation and yoga. Art therapists think we can dance, paint, sing, or act our way to sanity if we can express our emotions and receive validation. Spiritual solutions work best for me but I realize that they don’t work for everyone. But training in spiritual discernment and pastoral counseling is one possible pathway to healing and resolution for trauma, grief, and other things that usually get pathologized. It is one of many things that could fill the void if psychiatry is rightfully abolished or is given a buzz cut. As long as religious leaders are respectful and not ideological, ,abusive, or cult like, their views are very welcome here as far as I am concerned. I am just very grateful that some religious leaders/practitioners are willing to have a different perspective as it concerns their fellow ‘mad’ human beings. Most religious practitioners walk past mad people like the person on the road who was robbed and was finally assisted by the Good Samaritan. Most religious absolutely wash their hands of mad people, so great is their fear of liability. When mad people show up to the free breakfast at a typical inner city church, what should be a sanctuary for lost souls turns out to be very unsafe for mad folk. For example, if a person started shouting to him/herself, most parishioners wouldn’t hesitate to call 9-1-1 and have the police come and pick up someone for disruptive behavior. Learning to calm others, and learning to distinguish between violent and disturbing behavior, and learning how to de-escalate distressed people is a skill that can be learned but church leaders don’t seem to interested in modeling and training parishioner in the power of being present in this way. So much easier to use threats, wield authority, ultimatums, etc. So much easier to be influenced by all the media hype about those violent ‘psychotic’ people who need to be locked up.
Thanks for validating my despair of generally not finding solace for despair within the institution I belong to! I like your term: ministry of presence. Being present is not something only priests should be trained in. Lay people can and should be trained to be spiritually present and help individuals with spiritual discernment. I am suggesting is that they be trained by people with training in theology or sacred texts and not be associated with cults and ideologically rigid institutions known for their human rights abuses
Priests, rabbis, guru’s, shaman’s etc. are all human and have bad days. I remember when I was in my twenties, I made an hour long appointment with the priest of a large, urban church. I conveyed my litany of troubles to him as he sat directly across from me. At the end of a particularly long and weepy confession, I looked up and to my chagrin, I observed that his head was bent over, touching his chest, and he was snoring, in a deep sleep.
Thank you for sharing this! I hope you write regularly on this blog. I’m very relieved that someone with theology is not afraid to point to the rich heritage of healing within the Christian teachings. The leaders in my Protestant -Episcopalian Church have outsourced the care of those of us with broken hearts, disturbances of the mind, existential despair, trauma, etc. to secular psychiatry only to have nearly all of our suffering medicalized and secularized. Who is teaching the next generation of spiritual guides how to discern the spiritual aspects of what I am experiencing? Who can I and my family members turn to? I know my church has a rich heritage of ministering to people in psychological distress, using the healing power of prayer, ritual, and touch (laying on of hands). But I know of this generally from reading about it. It is not widely practiced in my church. If religious leaders don’t reclaim this rich heritage, and use it to meet the huge demand, the only practitioners of spiritual healing will be those with very limited education, superstitious, pious, dogmatic, ideological, cult-like, and harmful.
I agree with kindredspirit: Pushing back against the trainers and the mental health ‘authorities’ and ‘experts’ is hard enough but to do so publicly in a way that could put you at risk of being defamed, blacklisted, or fired by your colleagues is very commendable. By going public, the rest of us don’t feel so all alone in our individual battles. Each of us must come out of the closet a little bit more and exhibit just a little bit more courage to do what we know is right. Speaking truth to power is like a muscle that gets atrophied for individuals and family members who get ensnared in the mental health system but the more people exercise that muscle the more people can protect themselves and their loved ones from harm. The more they can protect themselves, the more people they can shield with their example, Eventually, a small army of well conditioned people will be able to shield themselves and others.
Interesting piece. Thanks for sharing. Well done.
Rossa, I think she stated at the very end, that this was the ‘teaser’ and a second blog down the road will contain more details. I can only speak for myself, but I can’t wait for the second piece of this!
I want you to be a guest at our home in Oregon and dine with our family so we can toast to your success, revel in your new life, and bask in your light. Inspired is an understatement of how I feel after reading your blog. I know many people who, like me, are at risk of having their wavering, tiny candle snuffed out by the mental health disease industry. We are forced to observe our daughter’s health deteriorate every year due to her psychiatric ‘treatment’ and we are very keen to support her safely titrating off Clozoril and lithium before her brain, esophagus, thyroid, stomach and kidneys are permanently damaged, yet we, her parents are terrified that if she ends up in a drug-withdrawal induced stupor, she could end up yet again for the zillionth time, in a hospital where she will be subjected to yet more torture, blame, labeling, and personal disruption. Your experience needs to be sung from the rooftops and printed in the New York Times. Thanks for sharing! My friend is going through the same thing with her son; she believes that all psychiatrists that have treated her son are ‘psychotic’ themselves and detached from reality. Maybe she is right. Most psychiatrists secretly admit to their colleagues the toxicity of their cocktails, sometimes, they drop hints that they know that what they are prescribing is sh*t but they can’t deal with the liability issues. Some brave prescribers, having supported a client’s unsuccessful drug withdrawal ending up in front of a review board.
This is as obvious as not letting Kraft and Kellog’s create the food pyramid for nutritionists
I agree with Frank Blankenship that people have the right to decent employment. I would love for our movement to focus as much on poverty and the right to a decent standard of living in ADDITION to treatment by force. Poverty is a part of a wider conversation and I’m assuming that Universal Guaranteed Income is only one of many poverty alleviation strategies and since I know very little on the topic, i don’t know if Guaranteed Universal income can go hand in hand with economic development, job development job training, vocational rehabilitation, subsidized housing, supported employment, etc., I would love to have a discussion about job discrimination and how this may prevent full inclusion in the formal economy among those who have been psychiatrized.
If we are talking about a guaranteed universal income as a pathway out of permanent poverty that is one thing. Currently, not enough focus is put on poverty alleviation for those who have been psychaitrized. Supported employment for the ‘mentally ill’ should be under scrutiny because if the work is tedious, dead-end work, such work would be counterproductive to mental and emotional wellness.
In this sense, we should talk less about employment and talk more about purpose. Everyone needs a purpose. It is empowering to know that one is important and needed. I don’t think the Highlander 30 Statement of Principles listed meaningful employment as a human right (I’ll check) but if it was not listed there, I think the movement needs to expand as Will suggested by enlarging the scope of what we ask for in ADDITION to ending force and coercion in the mental health system because I agree with Frank that employment is a right.
One underdeveloped piece of your argument is the universal guaranteed income could potentially pit individuals against one another, some individuals need greater supports, such as those with complex medical needs, therefore there couldn’t possibly be a one size fits all guarantee universal income that would eliminate are the need for medical diagnoses, of course if people with psycho social disabilities had fruitful dialogues with people with physical disabilities and there could be flexible systems for evaluating people’s physical, mental and needs under the umbrella of estblishing dignified yet pragmatic universal guaranteed income , I guess anything is possible
Will, thank you for initiating this discussion. You bring up some good points. Will reflect on this today and re-read your essay a second time before responding.
Thank you Adrian for all your dedication and love and commitment. This is a beautiful and moving description of the successful effort to save 2nd Story. I look forward to the Third Story, the Fourth Story, etc until we have peer respites in every community. I was speaking with peer activists in Seattle who explained their strategy to seeking system funding to launch two peer respites in Seattle. One strategy that they may use to to obtain the same license that owner of a B and B must obtain! There are many ways to skin a cat apparently and just a reminder that every community must find their own solutions/strategies! The important thing, as you point out is love. There must be alternatives to locking up people and drugging them. This is not love, not by a long shot. People deserve kindness, compassion, choices and options, warm places to sleep, peace and quiet, privacy, community and social opportunities, warm meals, etc. Peer respites is one way to provide these things and more. Go Santa Cruz! The challenge is on for other communities including mine to unite around human rights and alternatives, no matter how many barriers we encounter. (Glad NAMI supported this in Santa Cruz!)
If you get caught with a camera, as I did once in the same state hospital that Stephen Gilbert works at, you stand the risk of being blacklisted. I’ve smuggled in a smart phone twice so my daughter could access her email. Both times we were caught resulting in a warning. Failure to heed a warning can result in being forbidden to enter the facility again. Think about that. If you have a loved one in a facility, you will not be able to see them for what could be an entire year or even longer.
Your experiences mirrors my own. I logged hundreds of hours as a visitor and I witnessed ‘bum rushes’ I witnessed one male patient being stalked by three male staff members in a manner that was incomprehensible and irrational. Have you ever been in a line at a grocery story and there is a mom swatting her kid for misbehavior in a manner that could be called compulsive, as if she is in a trance? And everyone in the store who witnesses this abusive behavior knows that it is not only mean but its irrational because the kid keeps acting up and the mom keep reacting as if both are locked in a vicious cycle? And everyone in the store is embarrassed but no one will say anything? This is how I feel about psychiatric abuse and oppression. Family members and allies of feel cowed by the prospect of relating authentically what they observe at these places.
My loved one was hospitalized more times than I can remember. The conditions are what you describe everywhere I visited her, including a the private hospital called Sacred Heart hospital in Eugene, Oregon and Oregon State Hospital. Yes, as my husband reminds me constantly, there were staff members who were kind and had their humanity in tact, but these single people could not make up for the cruelty that is baked into the system.
I know from experience that criticism from an outsider can result in even worse treatment and ‘retaliation’ against a patient, leading to progressively more serious labels, more forced drugging, more restraints, and the likelihood that they will be moved to a more restrictive facility or their discharge date will prolonged indefinitely, until individuals lose all sense of personal agency and hope . The mental health system in my community successfully cowed my daughter and our entire family into a type of hopelessness that we are trying to heal from together as a family.
Treatment by force in big box institutions needs to be called out and named for what it is: abuse, pure and simple. Psychologists and counselors, including those in private practice cannot treat victims of psychiatric fraud and abuse. The treatment for victims of treatment by force isn’t medical, its called restorative justice. My daughter has a complicated relationship with hospitals now. She thinks that she needs to be in a hospital anytime she experiences uncomfortable feelings, voices, or conflict. After years of hospitalizations and treatment by force, it is hard for individuals and families to break free of this co dependency and regain a healthy sense of outrage for how they were harmed, let alone get to a place where they can organize and advocate for change without fear of retaliation.
Restorative justice will help individuals and families tap into the inner voice that never went away, the voices that are silienced but never stopped saying ‘This is wrong!” “This is a horrible way to support people in distress!” “Labeling and forcibly drugging people is wrong!” “Isolating people even more who are already marginalized in society by secluding them in cells and restraining then is idiotic and cruel!”
I have a lot of problems with this essay. I appreciate the author’s descriptions of iatrogenic harm, for instance, her Zoloft induced mania that landed her in a locked ward. The author however, assumes that the unfavorable behavior displayed by other psychiatric inmates is the fault of character flaws or addiction (“personality disorders”) blaming individuals who may also be suffering from drug induced behavior and psychiatric harm and abuse that manifests itself differently.
Besides, addiction doesn’t just relate to street drugs or recreational drugs. It also relates to the use of and withdrawal from legally prescribed psychotropic drugs that were/are taken voluntarily or involuntarily. Psychiatrists habituate their patients to all kinds of psychiatric drugs, then gaslight them to believe that their psychiatric symptoms can’t possibly be related to intolerance to the meds they hook people on. They willfully ignore the existence of withdrawal symptoms, rebound psychosis as well as the paradoxical effects these drugs can have on many people, they rarely recognize, let alone know how to reverse, drug induced violence and akathisia. Institutionalization can result in people’s personalities changing dramatically for the worse.
The back ward of the hospitals in which the author was describing contain the individuals who have arguably been treated the most poorly, who are chemically straight-jacketed to deal with the drug induced paradoxical reactions they experienced, such as compulsive behavior, dis inhibition, akasthisia, violence, and other reactions to drugs. This is ableism at its worst. People who cannot physically tolerate their torture and forced drugging get blamed by other patients for not being ideal patients.
Very disappointing. I have learned to expect this from the staff of most psychiatric hospitals, but coming from a victim of psychiatric harm and abuse, its demoralizing.
You are the exception not the norm. Are you in private practice? My husband was informed by a social worker at a hospital that my daughter’s ‘mental illness’ was like diabetes and that she would have to take medication for the rest of her life. Social workers, counselor workers, psychologists, and peer specialists at hospitals and secure facilities nearly always espouse the medical model. If they didn’t, they would get fired. Most choose to keep their jobs and espouse nonsense. People in private practice may be more at liberty to take a different tack but most people considered to have ‘severe persistent mental illness’ are receiving public services populated by professionals who espouse the medical model exclusively.
Robertj: My heart goes out to you and your son for not receiving supportive services in your time of need. I totally get where you are coming from. It is very painful to seek help and not be able to find help for a loved one in distress. You say that your son spent six months in a hospital and ‘did not get any better’. Your son probably did not get better because treating someone for a bioiogically based ‘disease’ when in actuality they have a lot of problems in life, social and psychological and spiritual in nature is the elephant in the room that Sera courageously addresses but NAMUI avoids. I took took the Family to Family class and it is horrid!
NAMI absoutely must be held to account for their one-size-fits-all embrace of the medical ‘disease’ model of ‘mental illness at the expense of every other, credible model out there.
My daughter, like yours spent time in a hospital. She spent about ten times the amount of time in a hospital that your son spent in a hospital. Like your son, my daughter did not get better. The treatment by force and institutionalization made her far worse. What parents like us have to realize is that any kind of treatment by force, especially treatment involving powerful drugs which reduce a person’s cognition, make them fat and sleep sixteen hours a day is degrading and dehumanizing for 99.9% of the individuals involved. NAMI advocated for treatment by force when it was presented to Congress in the form of the Murphy Bill. NAMI applauded when the Murphy Bill was rolled into the Cures Bill and signed into law by President Obama, despite hundreds of psychiatric survivors and organizations opposing it. This bill dangerously expands the use of force and coercion against our children.
Sera Davidow and many other ex patients work tirelessly to pressure lawmakers and policy makers to create supportive services for our children. When they are critical of NAMI,, they do so for very good reason. NAMI does not advocates for more force/non drug alternatives that are proven effective and humane.
I agree with you on most points however people who may experience disturbing voices on a daily basis may get blamed for being lazy and unproductive. Dealing with negative voices or intrusive thoughts/perceptions may require a lot of intense work and the work may appear to others as a character deficit because it takes away from a person’s ability to focus on activities that are group related. I’m sympathetic to the folks who claim that these simulations are ‘better than nothing’ Although I don’t completely agree with this statement, one of the points of the simulation is to elicit empathy from the general public. It would be better if your criticism came with an alternative public education plan. It’s not very practical to suggest that people supporting loved ones who hear voices in a home=based environment, enroll every household member in a four day IPS training. These trainings are financially beyond the reach families like ours. I think the point of the simulation is to create something that is within reach of most famlies.
I liked this article. Thank you for contributing. As a cradle to grave Episcopalian, I am particularly keen to see religious leaders calling for a more honest dialogue about this topic, rather than the usual call for ‘more treatment’ I read your article entitled: “My first guest post for Women in Theology: An Introduction to Mental Illness in a Theological Context” and I really liked it. Any chance you might contribute a piece to Mad in America about the failure of liberal Protestant churches to deal honesty with mental and emotional pain? Church leaders (with the exception of Evangelical or charismatic churches) have been basically outsourcing all spiritual emergencies and distress to medical professionals for half a century with dismal outcomes.
I was recently offered an opiate derivative pumped directly into my bloodstream during prep for a colonoscopy. I refused due to being allergic to opium derivatives. The coloscopy procedure ended up painless. The pain treatment for colonoscopies is opt out rather than opt in. It costs $ 1,200. I’m confused why the default assumption is that everyone will need a pain killer for what was, at least for me, a painless procedure. Drug company influence? Hospitals padding their billing?
NAMI had no right to silence your voice. NAMI silences a lot of voices out of fear. Thank you for bringing up the topic of reproductive rights as it concerns people with mental health labels. This is an important topic that needs to come out of the closet. When my daughter was in hospital, she harbored a belief that she was pregnant (she wasn’t). To me, this belief though dismissed as a ‘delusion’ by the medical authorities, was something she was working through, it had to have meaning even though I didn’t understand it. Unlike ‘experts’ and other family members I didn’t see any point trying to convince her that she wasn’t pregnant, even when she cradled and refused to be parted from a silly wadded up ball of plastic and fabric ‘baby’. Later, over the course of many years of conversations, (she sometimes swings between the extremes of mutism and a stream of unfiltered thoughts) sometimes the shards of meaning became illuminated from the ‘static’ and began to present itself with greater clarity. I began to see she had many challenges establishing the difference between sexuality and intimacy and she needed to establish trust in at least one person before this could take place. I now believe that her biggest problem, is not a genetic or chemical imbalance but a broken heart that has been coloring her life for some time and the hospitalizations, forced medication, restraints, seclusion were distractions at best, and a compounding of trauma and erosion of trust at worst. When one acquires a mental health label, one may be condemned to a life of extreme isolation. My daughter who I now know is capable of loving very deeply, was stripped of her freedom and ability to explore her sexuality at what is considered the ‘prime’ of one’s life. After her diagnosis and many years of being locked up, she harbored a terrible fear of never being able to experience intimacy, even though she was beginning to understand her issues with greater clarity. So, by the time she began to take responsibility for her issues around sexuality and love (she no longer believes she is pregnant but is seeking an outlet for her maternal love as well as a healthy and safe outlet for her sexual desire) a secondary trauma presented itself: The fear of unrequited love due to mental health stigma (who would want to date a crazy person) not to mention the neuroleptic induced sexual dysfunction which i pray is not permanent. You see, people who are on heavy drugs, cannot often enjoy orgasms and then there is the dilemma, if someone who IS on neuroleptics wants to have a baby, how does one safely wean off the neuroleptics during the pregnancy to protect the brain development of the fetus? There are many issues that NAMI won’t deal with but we must talk about these issues honestly to help our children who have been labeled fulfill their greatest potential, not just as potential artists, healers, leaders activists, etc but as potential lovers. After all, they should be afforded the same rights of ‘normal’ people to express their sexuality, bear children and receive and give love.
http://www.mindfreedim.org and enter freedom strike in the search engine
Thank you for laying out the options for people to get involved! I would like to get involved!
Many plants contain linalool not just lavender: hops, cinnamon tamala, mugwort, Cannabis sativa, cannabis indica, etc. Some linalool containing plants are overharvested such as rosewood which grows in Brazilian rainforests. To preserve rosewood, tiny amounts of real rosewood essential oil are mixed with other linalool containing essential oils for a remarkably high quality imitation oil.
Avoid artificial lavender and look for scents that are naturally derived or plant-based. Febreeze and other products containing artificial fragrances are bad for your health. 95 percent of chemicals used in synthetic fragrances are derived from petroleum (crude oil) and include benzene derivatives (carcinogenic), aldehydes, toluene, and many other known toxic chemicals linked to cancer, birth defects, central nervous problems, etc.
Most candles are artificially scented. To enjoy a scented candle, put a drop of essential oil in the well of molten wax when burning a candle
Oh happy day! My gratitude goes out to each and everyone who helped to attain this groundbreaking settlement! From the early pioneers who spoke out such as Dr. Breggin, to MindFreedom members and other activists like Leonard Roy Frank, Ted Chabasinski, David Oaks, Celia Brown, and Mary and Jim Maddock (as well as other members of the international ‘shock committee’) and more recently, activists like Deborah SCHWARTZKOPFF , founder of ECT Justice. Well done!
Slaying the Dragon of Psychiatry:
I agree with you that we urgently need to take action and that there is a social justice aspect to the problem of unbiased data trickling out through back channels that may never see the light of day as it concerns the general public. One gets a sense that this is a part of a systemic problem that is not limited to psychiatric and pharmaceutical corruption. One gets a sense that this is related to a larger problem of lack of morality and ethics in business and the lack of connectedness of wealthy business owners to their customers. A parallel can be found in mining companies that capitalize the short term gains and socialize the clean-up costs (Noam Chomsky).
The vast majority of people are taking anti-depressants voluntarily. If people who are depressed were offered different options such as support rebuilding their lost social connections, help spending time in nature, etc. they may not always go for the ‘magic bullet’ solutions. But whose job is it to educate people about the wealth of unfunded alternatives? Whose job is it to pay for them? Is it my job to educate my neighbors? Is it the government’s job? We certainly can no longer rely on professionals.
Should alternative professionals (the people who ‘first do no harm’) such as naturopathic doctors, somatic practitioners, music therapists, art therapists, peer specialists, massage therapists, life coaches, process psychologists, cognitive behavioral therapists, personal trainers, yoga instructors, nutritional counselors, etc. be offering their services for free to accommodate the high number of people who can’t afford such services?
Special interest groups are waiting in the wings to fill the void with other magic bullet solutions but most people know deep down inside that personal mental and physical wellness is achieved by de-cluttering the mind and de-toxifying the body, ridding oneself of the myriad of bad habits acquired by dealing ineffectively with pain and trauma which everyone experiences. This is a personal process that everyone must make, rich or poor.
And by the way, what I want is a full fledged revolution of the mental health system and a thriving underground railroad for psychiatric escapees, non-violently achieved, with psychiatric survivors forming the vanguard of the revolution, forming a broad coalition of stakeholder organizations that includes allies and family members
Thanks for responding to my comment. Your friend’s response sounded optimistic. I am wondering how widespread this desire is to create an independent manifesto is among peers. Will it be as radical as I hope?
Success can create its own momentum. When organic farmers created their own markets, it created new avenues for farmers to increase their income which in turn inspired a new generation of farmers to go organic and even some old timers started to convert their farms to the more lucrative products. Then the conventional food industry started to take notice. They wanted in on the action when organically grown became the fastest growing market in the food industry and tried to change the labeling standards. It took a powerful pushback by the organic movement to resist the food lobby.
It sounds as if your movement will not only need an independent funding source to take care of its own, just as farmers went directly to the consumers in each communmity, but you will need a long term plan to handle success. I have often heard activists like Penny Darbey talk about co-optation as if it led to a permanent state of corruption and a veering away from a set of original ideals from which there is no redemption. According to your friend, this is not true and that the peer movement is moving in a positive direction. If I understand your friend correctly, the peer recovery movement which had it roots in the psychiatric survivor consciousness raising groups like the one started by Judy Chamerlin is not dead, only in a state of reform. I will sit with that for a while and hope you and your friend are right!
I’m very proud of your work.
Sascha: You say “the mental health system is failing Peer Workers on so many fronts” but what about the people you represent, the people under forced treatment orders who are slowly dying from their treatment, who are sleeping sixteen hours a day, and have no friends? I hear you are frustrated by the way your employers treat you. I didn’t hear you mention the people you serve under ACT. Your objectives sound really positive, but what about organizing those 25,000 to prohibit treatment by force and demand alternatives and choices?
Thank you. This is a beautiful reminder to listen to our children and grandchildren and talk to them about sadness. My son, when he was little would go into crying rages and tantrums that I would sometimes dread going into public. He didn’t get diagnosed or drugged though and although he continued to have mental and emotional issues well into early adulthood, (including a failed suicide attempt five years ago) he did a phenomenal job finding appropriate ways to handle his sadness (diet, exercise, meaningful employment, hobbies, volunteer work, spirituality, friendship, etc.) and is now doing very well overall. His son (my eight year old grandson) has a much different way of expressing sadness. Friday, I was exhausted and didn’t play with him and he had to go to bed at 8:30. He cried himself to sleep saying that I had broken my promise but it was a gentle weeping sadness. On other occasions, hears voices and although I haven’t figured out what triggers them, they can be angry and hostile, and he doesn’t like to talk about them. We are very keen to avoid him ever getting psychiatrized. It can be a very difficult task protecting children from psychiatrization. The issue of whether to seek ‘professional’ help for a child can divide families and cause the system to initiate extraordinarily draconian measures which one would only expect in a totalitarian society. Not only to we need to educate parents about creative alternative ways of handling sadness, we need to legislatively protect humans from psychiatrization and forced treatment.
When I worked for a Catholic Charity, one of our programs was getting unhoused families into decent affordable, housing. Social workers in this program would advice program participants to look at every available option for increasing their household income. Frequently, the heads of household are either disabled or lack the necessary job skills to obtain employment that puts them above the poverty level which endangers their ability to stay housed. When a child is labeled with a psychiatric disability, the parents and/or guardians can apply for SSI, which substantially raises the household income by $500/$600 per month. Social workers in these charitable programs are serving as cheer leaders for parents so they can get their children diagnosed and treated. The extra income from one or more children receiving SSI benefits can mean the difference between housing or the street. It is far easier to obtain SSI for a child, if the child is taking prescription drugs. It serves as ‘proof’. Part (but not all) of the explosion of the prescribing of heavy duty drugs for children is due to socio-economic incentives. Before middle class professionals judge parents as ‘abusers’ for allowing their children to be drugged, consider some of the horrors faced by low-income or single parent households and the related incentives based on how our government safety nets for children are set up.
Two compare/contrast stories do not present enough material from which to make the conclusion of gender bias, but even if you are right that the author is biased, what of it? Some counselors may be more suited for young men, and some more suited for young women and judging by the epidemic of medicating exuberant male children with clean meth to get them to thrive in highly conformative settings, we don’t have nearly enough role models for young males in the helping professions.
My son, husband, father, and grandfather all all war veterans and I can tell you that the emotional layering of people with military conditioning is very different than that of non military people and specialization is a good thing! Bias seen from another perspective is not preferring one style or culture or gender over another, merely spending more time with one so as to render ones services more effective!
If the author indentifies with the young man, not the young woman, and therefore weights the first with greater detail, why is that a bad thing? I see that as a positive thing as counselor being able to meet can client where he is at. We have a generation raised on paintball and violent video games. What is the solution? Medication and sedation?
Our society is sending mixed messages to young men. These young men need role models.
Their families need access to psychologists who identify with behavior that is considered warrior-like. Like it or not 1% of every American households has at least one post 9-11 veteran. Vietnam era households, the rate is higher.
Returning veterans and their families need counselors who understand military culture to help individuals transition to civilian roles without the use of harmful medications to dull painful memories or they need the ability to help their adolescent clients deal with the mixed signals in the media as it concerns agressive behavior. Those who identify with the warriorrotector archetypes need to find non-violent outlets for their energy. This counselor may well have offered hope to a frightened family members who may well have sujected their son to drugging to handle his obsessive or ‘manic’ behavior.
The epidemic of school shootings may cause many frightened family members to seek chemical restraints for their male children who are neuro divergent. There are very few talk counselors who can establish rapport with young men who influenced by the media’s sometimes frightening potrayal of ‘manly’ behavior. Some young men are very vulnerable to the powerful mixed messages in the media around issues of gender and masculinity.They deserve special attention
This was an excellent article by Bob Nikkel. I’m surprised the Lund Report gave Mr. Nikkel a chance to say such critical things about psychiatry. He actually mentions the fallacy of the chemical imbalance theory. This is sure to rock a few boats at OHA! My comment is awaiting moderation approval. I hope that people respond not by mindlessly defending the the current paradigm of mental health care in Oregon with the usual rhetoric but with real facts and real evidence. Mr. Nikkel certainly gave people something to think about. We shall see what follows.
I guess what I’m asking for is for social workers and counselors and psychologists to adopt to the reality represented by tens of thousands of psychiatric survivors who are out of the closet and who identify with having been harmed and silenced by mental health care professionals and ‘experts.’ Why not immediately improve the mental health system experience from the perspective of clients by adding the following question – or one like it – to your current intake interviews: “Do you identify with having been harmed by psychiatric treatment either forced or voluntary?”
I’m glad that the challenges that counselors deal with such as their clients poverty and homelessness, came up as well as the issue of ethnicity, these are important issues. But I’m disappointed that this issue wasn’t raised: psychiatric abuse. What about the difficulty of working with people whose trust in the mental health system was destroyed due to forced psychiatric interventions? My daughter endured nearly eight frickin years of back to back involuntary treatment orders and being told where she could live and what treatment she had to accept at threat of going back to the hospital. She is basically institutionalized and programmed to fear mental health professionals She is also well versed into how to ‘hide symptoms’ or act ‘normal’ and otherwise hide the frightening chaos that often consumes her internal world. She knows better than anyone that you don’t disclose information to your counselor that could put you at risk of increased drugging.
How are counselors going to establish honesty and trust in the current environment? Community mental health agencies should not ask their underpaid counselors and social workers to go into the trenches and deal with the ramifications caused by the other people they may never meet. Clients need a safe place to process the grief and trauma of having their liberties taken away, maybe even scream a bit. They need justice and the recognition of harm and for someone in the system to stand up and APOLOGIZE
If you find it, please let me know the location of this video!
Hey Eric! Great letter! Can I reprint this with citations?
Way to go Amy! I’m glad to hear you are in charge of your meds and you aren’t subject to forced psychiatric treatment as my daughter was for so many years! Talk about disempowering and traumatic! I agree with your posts on other threads that sometimes it is better to get help with drug tapers from psychiatrists in lieu of going it alone (cold turkey can be a recipe for disaster) I think some people on Europe are working on a project to demand that drug companies produce tapering strips. Thanks for sharing.
What a gift to wake up this morning, with my cup of coffee in hand and begin my day by reading your incredible story. Wow! I got so much hope and comfort by reading this, words can’t convey my gratitude. We are supporting our beautiful daughter through something similar. Like you, she experienced catatonia, jail cells, forced injections, isolation, restraints, more hospitalizations that I can remember. This is really a hope injection!
This site offers so much encouragement. When my finances improve I will definitely contribute to MadinAmerica!
Also, I would recommend raspberry leaf tea to ease the labor pain!
Danzig 666: Hey I like shortbread! If someone compared my psyche to shortbread, I would be complimented!
Foglight, please don’t leave. All the good ones leave. Your patient could have been my daughter.
Bravo! This article is like a beacon or a proud flag flown on the battlefield of ideas, even as the opposition lines up on the horizon, outnumbering us as usual, with their usual mercenaries: bought and paid for media ‘journalists’ and other propaganda specialists, discombobulated family members, sold out scientists, brain dead faculty members, and saavy pill pushers. This time, we are wise to the tactics of the opposition, like the way it co-opted the rhetoric of the recovery movement, begrudgingly throwing a bone to the existence of trauma and childhood abuse, while failing to acknowledge the huge elephant in the room, the stigma of having a permanent label, the trauma of being diagnosed and cared for by uncaring, cynical, time-pressed, uncommitted, overpaid, and burn-out professionals, the trauma of having the ‘treatment’ ruins one’s lives, and having no one believe in that fact, the trauma of having one’s person hood, privacy, dignity, and civil rights taken away, all of which constitutes harm and abuse.
Gabi: I’m slow to forgive and quick to anger, not the best person to advice you in this matter but my two cents worth:
Maybe forgiveness is a muscle that needs to be used on a regular basis or it becomes ‘atrophied.’ Why don’t you practice forgiveness on a small scale like forgiving the person in front of you in the express line who has fifty grocery items in his cart instead of fifteen? Or the person who cuts you off in traffic?
It stands to reason that when you forgive people frequently for smaller things, one could work one’s way up to forgiving people and institutions for larger things. I have always found it difficult to forgive people who are oblivious to the pain they caused others. Perhaps, if one waits long enough karma catches up to one’s abuser in one’s lifetime in which case one has to decide whether or not to feel pleasure or pity for one’s abuser. Maybe I’m naive. Best of luck. Thanks for sharing
Wow! Great idea Julie! Thanks for sharing!
Congratulations Bonnie on an incredible victory. Sylvain brought up a similar fear that I deal with on a near daily basis in my own little activism here in Oregon, “They have more power” and “They have more money!” “We are so powerless” and “We are so penniless”. In every other movement for social justice (or the environment) in which I have been active, I have never been so consumed by such fear of failure, as I have with this movement for human rights in the mental health system. Your victory ignites me and gives me inspiration I need to carry on in my own little universe to continue to knock on doors and speak truth to power, and write letters, and go to town hall meetings and challenge the prevailing authorities that have spread lies for far too long.
The insidious means by which a big cartel of pharma companies, colluding with the APA and pseudo consumer organizations like NAMI could shape our entire culture’s view of human distress and twist it to their advantage, is nothing short of breathtaking.
In your work, to educate people in institutions in which not only the institutions themselves have become corrupted, but whose academic programs cater to millions of otherwise bright students who routinely suspend their intellectual capacities in the promise of a ‘magic bullet’ solutions to human distress, is a gargantuan task. I tip my hat to you for your steel will power, vision, and clarity of purpose as you forded through very dangerous waters and came out the other side.
Will your project offer any networking opportunities for family members and allies? I am a mom and I don’t feel that NAMI is a good networking place for me to support my loved one who wants to reduce/come off psychiatric meds. In NAMI, it’s a taboo subject.
Dreams are awesome!
Yes, I couldn’t agree more with your statement ‘People do need to get it out of their system sometimes.”
Congratulations! This is a wonderful, well-written piece and I truly enjoyed reading it. I appreciate your down-to-earth humor, somewhat self-deprecating style. While poignantly describing the degradation and futility of forced/coerced treatment you managed to avoid the minefield of traps that so many of us fall into when recounting stories involving psychiatric fraud and abuse
Last year or the year before, I can’t remember when, I started to develop some insight into my own daughter’s ‘psychosis’ insofar as she finally made me understand that it wasn’t all awful. In fact, she finds it entertaining at times. At times, the imaginative scenes playing in her mind are often pleasant and even erotic. I can see where such an imagination can really yield benefits while dealing with the daily tedium of being locked up in an institution without access to literature, the arts, sex, romance, humanity, and well, diversity of opinion.
When contemplating psychiatric fraud and abuse, I need a repertoire emotional responses that is more diverse than anger, anger, anger for my life to have some balance and fun. Humor is the best pill sometimes.
While I will probably continue to advocate for ending all all force and coercion in the mental health system, or for that matter, any ‘treatment’ which is degrading, humiliating, futile, harmful, even fatal, I would like to see humanity develop greater bandwidth, tolerance, imagination, insight, and less toxic reactivity when fellow human beings display behavior that is outside the narrow confines of ‘normality’
As David Oaks says, “Normal behavior is killing the planet” . ‘Creative maladjustment is needed to eradicate normal behavior when ‘normal’ behavior is destructive. If we teach our children that ‘conformity and ‘normality’ are the highest ideals to which they must strive we are not giving our children the skills they need to confront and address injustice. It is also not very fun.
at this point I could use less eye witness reports of psychiatric abuse, less evidence of psychiatric corruption, and stories like this which show humanity at its maddest and brightest.
If folks who are commenting on this blog believe that psychiatric drugs are linked to school shootings and want to do something about the problem, not just talk in an echo chamber, here is a petition folks can sign:
Steve and Yeah I Survived are both right. We should not be breaking out the champagne bottles because of this one critical study. Primary care physicians are still the number one on-ramp for receiving an ADHD diagnosis. For that reason alone, The Journal of Psychiatry can afford to publish this study because, after all, psychiatry can point fingers and say, “We did not create this over-prescribing problem, pediatricians and primary care providers did!” In fact, one could argue, the publication of this study in a journal dedicated to PSYCHIATRY is likely to have far less impact on prescribing for ADHD than if it had been published in a journal for pediatricians. Still, some readers of this article may be start to develop a healthy skepticism. Maybe some parents, upon reading this article may be more inclined to ask their doctors some tough questions, such as do they tend to believe or be influenced by the rubbish in the medical literature that passes for ‘science’? After all, readers can’t help but wonder what kind of marketing went into this epidemic of getting children hooked on clean meth?
Knowledge is Power..
One of the stakeholder groups you mentioned, insurance companies present low yielding fruit in terms of strategic reform legislation. My daughter’s multiple ineffective and inhumane involuntary incarcerations at a private hospital cost our private insurance company several hundred thousand dollars. It took us years to pay off the co-pays. Where is the outrage insofar as many people are being forced to pay for the torture of a loved one or that insurers and taxpayers are asked to foot the bill for torture, fraud, and iatrogenic harm. I have since learned that consumers can ask for an internal or external review of all insurance decisions. Insurance companies in many states have been forced to implement parity laws which gives mental health disorders equal status. We need to extend the benefits of insurance to cover other more effective humane alternatives outside the medical model
I am wondering about the word work too. Shouldn’t helping people be a pleasurable pursuit? I equate work with chopping wood and cleaning the hair out of the shower drain. Sad to think of giving another human being emotional support the same status as the thousand details I procrastinate and avoid everyday because it is work
Good point Julie! Love your passion for plain language,, as always.
Every little bit of data helps. Nibble away at the clinical practices, subject prescribing practices to scrutiny, expose the ridiculousness and subjectivity of the routine diagnostic rituals to the public, one person at a time
I’m surprised this got published. Do I detect a little integrity at an academic institution? Let’s watch the push back. Florida International University will not get future federal funding. Margaret H. Sibley will get sacked. If she has tenure, she will not be asked to serve as a keynote speaker at future APA conferences or present her paper at gala events sponsored by big Pharma companies.
Thank you for sharing your knowledge. To me, this reinforces everything I have come to learn about and lament per the failures of the western approach to ‘psychosis’.
You wrote: “Mental health providers should be respectful, compassionate and understanding, but they are too busy “fighting psychosis” and hence, they do not see their “patients” as who they really are — as whole people. They keep people sick with their unhealthy approach and their suppressing drugs.”
As a parent, i realize that this applies to family members, friends, and caregivers too. A hard take away but very true.
And I also apologize for the angry tone in my comment. I sense from your other comment, you are trying to do the right thing but you are complicit as a professional by working in a broken system that abuses people, pure and simple. When professionals who make money off the broken system lament about how nice it would be if the system were different, I can’t help but ask myself, what is your strategy for resistance? How do you challenge your colleagues when they disparage and dehumanize their clients? How do you own your privilege when working with people who have lost everything? How do you honor your client’s right to choice and autonomy when they have been court ordered to receive McTherapy?
Knowledge is Power:
As the parent of a survivor, a beautiful, intelligent daughter who was court ordered to receive conventional psychiatric treatment for about eight years, I find your comment slightly chilling. You identify as a clinician who is “highly trained never to disclose unless it is in the best interest of the client” is chilling for several reasons.
“Untrained” psychiatric survivors delivering peer support probably have a lot more discretion and self restraint as it concern ‘self disclosure’ than you think. They probably know a thing or two about what is in a peer’s ‘self interest’ too.
Survivors know that what they say to a professional will get documented in their medical records permanently and follow them from facility to facility like a ball and chain. What you say or don’t say can get you kicked out of psychiatric facilities without a discharge plan or any support services like housing. What you say or don’t say can be used against you in a hearing to take away all your civil liberties. Survivors know a few things about self disclosure, probably a lot more than you give them credit for. This kind of experience in self disclosure you can’t learn in college.
What also chills me is the implication that you, the professional always know when self disclosure is in the best interests of your client. Do you always ask your clients before you disclose something if it would be in their best interest? In fact, how do you determine what is in their interests generally ? Do you spend hours reading 1,000 pages of their medical records to find out shocking examples of iagrogenic harm? When doing a client’s ‘history’ in while checking off little checkboxes, do you remember to ask if your client has ever been the victims of psychiatric abuse and harm or institutional betrayal?
I am concerned about your implication that self restraint and discretion as it concerns self disclosure can be trained in a formal, academic setting. What did this training consist of? Did you give up a weekend to do a CEU on this topic? Did your professor assign a book on the topic of self disclosure and you parroted back the answers on a pop quiz?
Self restraint and discretion as it relates to self disclosure and when such disclosure is in the interests of someone you care about are character attributes that can evolve naturally as a result of suffering and believe me, if you were court ordered to sit through hours of checklist interviews from pompous trained therapists and other ‘clinicians’ whose compassion ceased the minute the short hand reached ten minutes till the hour, you would understand the importance of self restraint and discretion.
Peers are less likely than professionals to be thinking of the client in the lobby, the clock on the wall, or the billing paperwork. They are more likely to be authentically with someone, sometimes for hours, tolerating silence, weeping, even catatonic behavior from an acquaintance, friend, or family member.
Peers are more likely to resist the temptation to blurt out platitudes in response to gut level pain, and less compelled to maintain a professional front (which is more for your protection than the protection of your client)
Peers are less likely than trained professionals to use invisible teleprompters, spitting out dogma from some theoretical framework they learned in college.
I concur with Ron Bassman! If people drop out of the movement now because things are looking bleak who will mentor the next generation of psychiatric survivors? My beautiful daughter is only 28 and she has been institutionalized and forcibly medicated for nearly 10 years, nearly half of her life! Who will teach young adults how to organize and stay the course when things look hopeless? I hope that people with lived experience who retire because of the the restrictions placed on them by their employers, will use the freedom of their retirement to get more involved in the movement for human rights (after a good vacation, of course)
Thank you for laying out these issues perfectly! I find it incredibly useful to distinguish between peer-developed peer support and peer staff model. I think you are spot on about the origin and history of peer-developed peer support in the seventies and it makes a lot of sense that this history should not be overlooked.
Some individuals identify with their mental health diagnosis and identify as being helped by their conventional psychiatric treatment. Do you think that peer developed peer support is dominated by individuals who identify with having been harmed by psychiatric treatment and who are therefore critical of psychiatry in general?
I occasionally hear complaints in social media sites from individuals who feel that they are being ‘pill shamed’. I have no way of telling if this is an authentic silencing of voices in the peer support movement or if this is a tempest in a teacup being generated by big Pharma trolls, or perhaps a mixture of both.
Also, I have a question about the degree of harm that a person experiences in the mental health system and whether this is a factor in sizing up whether an individual qualifies as a peer, in the absence of any standardized definition of a peer.
For example, I am a parent who has receives voluntary mental health counseling. I collaborated with at least two counselors to select a diagnosis of ‘adjustment disorder’ mostly for billing purposes.
Acquiring a mental health diagnosis allows me to to obtain talk therapy that I would normally not be able to afford and I find it to be empowering. It provides me with insight and inspiration to fight for human rights in the mental health system.
Does my experience in the mental health system qualify me as a peer or does one have to be a victims of psychiatric torture and abuse? I think there are more distinctions that need to be made in this whole discussion of ‘Who Gets to Define What it Means to Be a Peer.”
In my mind, I am a peer but not a psychiatric survivor. How important is this distinction when applying for work in the mental health field?
Is a psychiatric survivor at higher risk of employment related discrimination if he/she is out of the closet about his/her psychiatric abuse? Conversely, is a staff peer who is happy about the psychiatric services he/she received in the past less likely to experience employment-related discrimination?
Is employment related discrimination likely to result in a migration of peers back to their ‘roots?’ (from the peer staff model to peer led peer support model as characterized by grass-roots groups meeting in church basements as they did in the seventies?
The fastest growing trends in the movement for human rights in mental health seems to be Hearing Voices Support Groups and Psychiatric Drug Withdrawal Support Groups. These seem to me to be genuinely inspired by the principles of peer support your identified as peer-led peer supports.
I am heartened that the Hearing Voices movement is developing some services for family members so there will be alternative ways for family members to get plugged in, besides NAMI which has become depressingly sold out
Steve: I agree with you. I favor CBT because i’m one of those people who believe I can ‘think’ my way through my problems. But people who practice CBT often pretend to be open minded when really they harbor strong values that they wish to impose on their clients.
Hey the link goes to the wrong article
I received several years of outstanding counseling from a Licensed Professional Counselor who was extremely knowledgeable about psychiatric abuse and how it had affected my family. I miss my counselor! He is stupendous! Embarrassingly, I can no longer afford the expense of seeing him.
I don’t know about others who hope to benefit personally from this framework. To me it sounds wonderful. However, this type of approach would require a lot of work. In my previous two years of counseling I barely touched the surface. It would take time for me to become conscious of the many ways that I responded to threats in the past. It could go all the way back to my childhood and have relevance to my marriage, home-life, parenting style, career, social life, etc. My MO may also be tangled up in my impulsive/compulsive behavior and other bad habits I have acquired along life’s way. Talking about such things elicits shame and embarrassment, and it takes time to build trust. Most private insurance require that a LPC’s and other practitioners diagnose a client using the DSM and come up with a treatment plan in order to be compensated. There is a sense of ‘hurry hurry, hurry’ when dealing with the medical industrial complex in the US.
In the UK, this model may have a chance to see the light of day. It might win some research grants and have a chance to be implemented in a more ‘outcomes’ based socialist medical system. In the U.S. even if this model were very worthy and had a large evidence base, its proponents would face a steep uphill battle to gain the attention of the guilds and the media and a huge lobbying effort to force insurance companies and government programs to provide access. If it sounds too good to be true, it is.
Also, in this model, there is a sense of providers biting the hand that feeds them.
Missy and Skylar, I am glad you both came to the understanding that you don’t need to fit into a ‘psychiatric paradigm’ to be happy. I look forward to more blogs from you!
The failure to identify access to healthcare as a contributing factor to bad outcomes without simultaneously identifying the utter lack of choices and alternatives available in the healthcare system, even to privileged people with cadillac insurance makes this training program utterly disingenuous and useless. Rich white people get the same sh*tty treatment in the mental health system as disadvantaged people unless they luck into receiving genuine fully informed, non- coerced treatment up front.
Great article and good response to the first comment. I don’t really see why folks who identify with having been harmed by psychiatry are so ready to shoot down the concept of nutrition having a major impact, at times, on ones mental and emotional state, our moods, etc. There are chemicals in food we eat everyday. Environmental toxins play a role too. For XMAS I got an air filter and when I used it, for the first time in months, I had a blessed reprieve from a hacking cough that plagued my sleep for months. Could the air filter have been a placebo? Yes. But maybe it wasn’t. Maybe my cough was a inflammatory response to small particles in the air including airborne dust and woodsmoke. Any new option or alternative we receive with a smaller side effect is a boon. I can’t envision a system in which people are coerced to stop eating junk food and eat leafy greens or take micronutrients, a system in which soda pop is prohibited. Nor would I promote such a system. Empowerment is at the root of all healthy living. People need to learn to make choices that are good for them but having data is huge. Yes, there will be quacks when we move to a system that honors people’s right to choice. We will have to be on guard for all kinds of scams. All the more reason to have research that helps us eliminate fraud and quackery.
My experience with the air filter (placebo or not?) made me realize that in the process of debunking the myths of psychiatry and attacking its corrupt junk science we run the risk of failing to identify even small, environmental triggers and nutritional deficits in ourselves and our loved ones, which if resolved, could make our lives a whole lot better!! Who cares if something is a placebo or not? If it works, it works! I dream of a system where the mental health system is like a buffet. If I arrive at the buffet straight from the desert, starving and thirsty, I may gorge at first but little by little, as my body adjusts to the offerings, I will slow down and become discerning and start partaking of every healthy offering before me!
I’m sorry for loss. Thank you for going public.
On your foundation’s website I found the following:
“Mental Heatlh First Aid teaches you you how to idenity, understand and respond to signs of mental illness and substance use disorders in your community. Mental Health First Aid is an 8-hour course that teaches you how to help someone who may be experiencing a mental health or substance use challenge. The training helps you identify, understand and respond to signs of additictions and mental illness. To find a Mental Health First Aid Course close to you, check out this website https//www.mentalhealthfirstaid.org/. (I left in the mispellings)
I wish you would promote emotional CPR instead.
The problem with mentalhealthfirstaid is it is just another early screening program, the darling child of NAMI, a corrupted organization which promotes the false narrative of psychiatry. Early screening programs, rather than destigmatizing and teaching people about alternatives that ‘first do no harm’ are simply funnels to a faulty treatment paradigm.
The epistemic authority of mental health system is considered to be the person who is a board certified psychiatrist. Psychiatry holds that all ‘mental illnesses’ are chronic brain diseases with biological origins, namely, an imbalance of neurotransmitters. This is a false narrative of human suffering that is promoted by the industry that benefits from sales of drugs, which sedate and do nothing to ‘correct’ imbalances of neurotransmitters. In fact, neuroleptics like the clozapine which your son was taking causes a shrinking of the brain.
My daughter was hospitalized in a state hospital several times for schizoaffective. We are desperately trying to help her taper off clozapine because we could see immediately how negatively it has impacted her heath: weight gain, heart burn, lowered cognition, disorganization sedation, fogginess, goiter, labored breathing, incontinence, prone to infections, etc. But there are virtually no psychiatric drug withdrawal support systems in place due to the corruption of the field of mental health. Even the so-called consumer advocacy organizations like NAMI receive corrupt funding from big Pharma. Where is a parent supposed to turn to?
As a parent I feel that all the cards are stacked against young people with a psychiatric diagnosis trying desperately to live a drug free existence. Our entire culture has bought the false narrative of psychiatry hook, line, and sinker that sedating people with mental and emotional problems is the first line of defense against ‘mental illness.
Just as young criminals become hardened when they are sent to large prisons and come out career criminals, involuntary treatment and forcing drugging hardens and makes individuals experiencing trauma distress, and grief much, much worse!
My daughter experienced extreme civil rights violations in the mental health system: restrain, isolation, seclusion, institutionalization, and forced medication. The drugs she was forcibly injected with caused adverse reactions and caused her to become uncharacteristically violent giving her a criminal record. Her forced drugging also caused her to experience new psychiatric symptoms! Instead of removing her from an offending drug, arrogant doctors completely and willfully ignorant, would treat her with contempt, raising her dosage to ever higher levels, nearly killing her!
There is not a single case of trauma, anxiety, and distress that cannot be made worse by psychiatry, forced drugging and institutionalization.
Your use of the word voodoo treatment is spot on. These drugs are shotgun approaches that should be used judiciously for very short periods of time but instead psychiatrists are so corrupt they are not willing to admit that patients get chronically dependent and often become much worse after being put on these drugs. Consequently our children are suffer ing great harm when they try desperately to come off these drugs without any support.
Usually patients like my daughter are stigmatized as ‘non compliant’ and they attempt to secretly coming off their deadly cocktails without any social supports. Consequently, many pf our most iatrogenically harmed children end up relapsing going back to the hospital where they are even more drugged up.
Drug solutions to emotional and mental problems are nuclear solutions.
I’ve been observing the movement to prevent physician suicide for several years now. One of the biggest drivers of psychiatric abuse (besides the overmedicalization of human suffering in your field generally) is related to a problem faced by doctors in all specialties, not just psychiatry. It is the sadistic practices in place at medical schools and hospitals. These practices are a twisted form of hazing. Residents are forced to work long hours and are treated like sh*t by senior staff. They then turn around and direct the abuse they received onto their patients, thinking it is normal.
We must reject ‘normality’ in all of its perverse forms. ‘Normal’ behavior is killing the planet. We are demineralizing food, polluting the earth, air, and water, and turning the helping professions into institutions of harm and corruption.. Corporate owned media is dumbing down our society, and institutionalizing people in warehouses is viewed as ‘progress’.
I’m sorry to say this, but while I am slightly sympathetic if you took out a loan of $200,000 to make it through medical school, making you virtually into an indentured servant for three decades, but there is a huge problem with the status and level of reimbursement afforded to members of your profession. We pay child care providers and care givers for the elderly about 3% of your hourly wages. They lift and transfer patients, massage them, bathe and help with their hygiene, nourish them, take them to appointments, etc. and yet our society values their labor at $10/hr v.s. your $300/hr.
My brother left the practice of medicine after twenty years doling out pills to his patients and became a landscaper. Now he heals the earth. He has never been happier.
Just got my copy in the mail! Can’t wait to read it!!
This is a biased study and missed the point. How can you use Medicaid records and completely beat around the bush as it concerns child and family poverty? Only a privileged researcher working in an academic bubble would not know that what is referred to as a ‘quick fix’ is a financial life preserver for a family one paycheck away from homelessness. A diagnosis and ‘proof’ in the form of a child needing powerful adult medications is how a desperate mother convinces a doddering old while civil servant that her child should receive SSI income. That extra $500 per month can be a Godsend thanks to Bill Clinton converting welfare into the punative program it is today called TANF
This is speculation but my guess is that if you find a substance similar to stomach acid you can hack this ‘high tech’ gadget, say by throwing the God d*mn pill into a glass of lemon juice. It just takes cheeking to a new level. Facism prevails when fear is endemic. It’s good to be vigilant but don’t lose hope.We will win this battle and win our human rights!!
I am mad as h*ll reading about this problem. I’m all fired up. You are right. We need to organize. I’m going to read your entire blog from start to finish when I get off work, as well as every comment posted on this blog and ask myself, what can I do?
I am not involved with academia but I am glad you brought this problem to my attention.
I have an adult daughter who is one of the ‘others’. She has an incredible mind for philosophy and she is tremendously creative when it comes to the arts but she is different. Is there a place for her in a college community? If the university is not accepting of her differences then there is very little hope. After all, the university is supposed to be a tolerant environment and attendees are supposed to be dedicated to the pursuit of knowledge. People can learn a lot from talking to my daughter if they truly have a curious nature but she can mutter to herself at times and say and do strange things. Oh my God! I’m sorry if this disturbs you or makes you feel ‘unsafe!’
Gads, there is a homeless person walking on the university grounds. Someone get out the Lysol and spray the university! Report it to campus security!!
i hope your book will sell lots of copies and get on the best seller list so more people of the ‘worried well’ will be advised to steer clear of psychiatry. As my friend Marcia says about living in our times, “If you are not disturbed, there is something wrong with you!” My belief that people experiencing overwhelming distress, anxiety or depression should steer clear of psychiatry is not to make light of people’s pain but only that we need to redouble our efforts to educate people that psychiatry can quickly compound one’s problems and what is needed is a full fledged common movement to create caring, tolerant and compassionate communities and sanctuaries for people whose emotional needs are not met by family members and friends.
Thank you for your unpaid, high level work on this important issue!
What is WGAD stand for? Do you know how we can put pressure on Congress/Senate to ratify CRPD?
I visited this organization’s website
https://dredf.org/ and in 2013, in their archives, they announced that a call in day for CRPD on November 12.
Do you know of any national campaigns in this area?
Finally, I read your comment with interest:
“Their information was limited by the extent to which we were able to provide legislation from particular states (we did not have the capability to inform reliably on each of the 50+ separate legislations) and by their inability to visit any civil-confinement mental health facility”
What do you think can be done at the grassroots level to obtain the data showing how many people are involuntarily committeed, drugged, shocked, etc. in the U.S.
Some states may have better options than others for this kind of data, Here in Oregon, we have the Psychiatric Security Review Board (PSRB) for people who plead guilty, or are convicted of a crime (no matter how minor) but who plead ‘guilty except by insanity’ PSRB is a highly restrictive board that manages forensically committed individuals, many are restricted for life. I think PSRB would have very good data for at least the state of Oregon but does one have to file a FOIA to obtain the data from PSRB? Can an agency use HIPAA to prevent journalists and researchers and activists from obtaining this data?
Dear TRM 123, do you have a website?
Tina, thanks for the citation. I will be checking out that site!
Hang in there Yet Another Account! I am so sorry to hear about your family not respecting your perspectives and beliefs. Have you thought about leaving educational literature around your dad’s house and de-indoctrinating him with homeopathic micro doses of data? I’ve heard that sometimes you have to walk away from family. I am very fortunate, insofar as my husband is proud of my association with MindFreedom and ditto with my own father. There is a strong anti-authoritarian strain that runs through my extended family.
But the members of my family who make their living in the medical industrial complex are slower to grasp the data showing harm of long term drugging. both cling to the belief in the appropriateness of involuntary treatment for people who have the odious label, “SMI”. I gave a copy of Robert Whitaker’s ‘Anatomy of an Epidemic’ to my sister-in-law, a pharmacist and my brother, an MD. They both failed to read the book but we left the issue alone for many years and continued to remain cordial to the greatest extent possible. But as I continued to share with them my personal experiences supporting an adult child through the day to day challenges of psychiatric drug withdrawal, their icy resistance to considering data about the risks and potential harm of long term drugging began to thaw. My sister-in-law even offered to titrate my daughter’s medication in her lab. If NAMI were only in the business of offering parents an array of perspectives, most importantly, the voices and stories of experts by experience–individuals who identify has being harmed by involuntary treatment–there wouldn’t be so many close minded parents and TAC wouldn’t enjoy the authority it currently does. Alas, history took a wrong turn somewhere when NAMI colluded with the APA to promote a specific narrative. Thank goodness for the courageous and selfless work of activists like Tina Minkowitz, Frank Blankenship, and other activists/leaders in this field. Activism is moving the needle slowly.
This article is an important resource for activists. In layperson’s language it explains how confirmation bias plays itself out in research social and behavioral sciences.
Activists who advocate for choice, alternatives, and human rights in the mental health system are rooting for higher scientific standards and a long overdue overhaul of what constitutes an ‘evidence based practice’. Higher scientific standards can only help our movement to revolutionize the mental health system
The author has laid out a central problem with behavioral science research that even a layperson can grasp, it’s vulnerability to corrupting influences, and proposed a valid solution: establishment of psychology research “preregistration,” where investigators would be required to submit an introduction, and their proposed methods, definitions, and analyses, before they collect their data.
May I suggest that well intended researchers and readers of MIA who do manage to obtain independent sources of funding for alternative approaches to psychosis (out of what little exists) apply the higher standards laid out in this article voluntarily by pre-registering and declaring their methodology before they collect the data? Even if the status quo researchers are not required to do so, doesn’t mean we can’t apply the higher standards ourselves.
Great News! It is available on AmazonSmile (so 2% of the purchase can benefit MindFreedom if folks take five minutes or less to sign up for Amazon Smile and designate MindFreedom International as their designated charity) I will get my copy sometime in November or early December after the release date. If any contributors to Mad in America who are reading this blog cannot afford the cost of a copy ($22 plus shipping) and they are willing to follow up with one or more of the actions suggested by Ms. Burstow, please email me (Sarah) at [email protected]. I am a person of very modest means, but I can afford to purchase one additional copy. (-:
I know some people will be offended by my using Ayn Rand in the same breathe as Martin Luther King. Writers from both the right and the left use the novel to influence people. Ayn Rand influenced a lot of people whether you agree with her philosophy or not. Also, lest someone scoff at my using ‘One Flew Over the Cuckoo’s Nest’ as an example of a novel that influenced people’s thinking, consider this true story: a psychiatrist once stood by my daughter’s hospital bedside, while she lay catatonic for over a week. He wanted to shock my daughter and I was considering filing an emergency court injunction to block his ‘treatment.’ He didn’t want to defend his ‘treatment’ in front of a judge, any more than I wanted to go down to the law library and take a legal crash course. We were mentally drawing swords and circling around one another with my daughter’s spirit somehow dominating the drama, even though she was in a coma like state. I was scared out of my wits because he had power and authority and I was just some frumpy middle age mother with very little resources to hire an attorney Guess what? He was scared too! He blurted out, “You know who I blame? That damn author of ‘One Flew Over the Cuckoo’s Nest!” He made everyone believe that shock is bad!” As it turned out, he didn’t have the heart to proceed and I didn’t have to seek legal assistance because the public exposure in the press is something that the average psychiatrist loathes.
Contratulations Ms. Burstow:
Anyone who has read “The Jungle” by Upton Sinclair, “The Iron Heel” by Jack London or “Atlas Shrugged” by Ayn Rand or “One Flew Over the Cuckoo’s Nest” by Ken Kesey knows that fiction has great impact on social movements. Fiction can make philosophy palatable or create larger than life archetypal figures. Social movements need heroes and villains. Social movements require that the public have their complacency smashed by a clear moral division between good and evil. Dr. Martin Luther King knew the power of civil disobedience and televised images of non violent individuals being hosed, attacked by dogs, even firebombed to create a moral drama, a story that was so compelling, people could no longer be complacent. Wasn’t it Marx who said that ‘Artists are the vanguard of the revolution? I can’t wait to read your book and take some of the actions you prescribe. Good day to you warrior woman.
Dear Dr. Kelmenson, MD. Thank you for sharing your views so directly. I agree with all of your views and I admire your courage and openness. I myself wouldn’t be this blunt to acquaintances of mine who opted to put their children on medication but I am glad you are stirring the pot. Someone in your profession has to turn the heat up. One concern though:
I hope that individuals on the licensing board in your state are not aware of this article. Otherwise, they may feel motivated to fabricate some kind of phony grievance and call you in for a psychiatric evaluation and recommend some kind of disciplinary action, and should you dispute their recommendations, it could put your license to practice at risk.
My uncle was a volunteer doctor for a community clinic launched by the Black Panthers in the early 1970’s in Portland, Oregon. Fortunately, his license was never at risk as he was well liked at Good Sam and Kaiser where he practiced, but the government did tap his phone even though he was never involved in politics, let alone radical politics. He simply wanted to help low income people gain access to healthcare. Take care.
Sonja: Great comment. Loads of insight. I agree with everything you say. The movement’s most vocal activists spend a majority of their time defending funding for peer delivered services and ignore policy. One place you appear to contradict yourself is by downplaying the importance of education while seeking ways of getting professionals to be allies. How would this happen if not by education. Finally, education and policy overlap. Such as a policy to prohibit advertising of pharmaceuticals on television. Marketing often masquerades as ‘education’. Consider the huge volume of pharma funded medical information websites, and the influence of pharma reps on grand rounds at medical colleges. To counter the damage to the public perception of ‘mental illness’ by decades of Pharma marketing campaigns requires a double pronged effort of ‘re-education’ and policies around education
This is much of what Gabor Mate was saying in The Realm of Hungry Ghosts, but there are more citations. I didn’t realize how large the body of evidence is connecting heroine addition and lack of early bonding.
Meaningful employment is not the same as capitalism. Everyone needs a purpose in life to thrive, regardless of what kind of economic system one lives in. The ability to receive a gift in kind or payment for services well rendered or a well crafted, useful product is one of the benefits of living in an interdependent society. Entrepreneurship is a great avenue for the disabled to work around the built in discrimination and/or barriers to the workplace.
I totally agree with Corinna on this. Will Hall didn’t mention the crushing poverty experienced by individuals who are permanently designated as ‘disabled’. Class disparity and the extreme consolidation of wealth to a smaller and smaller segment of society is deeply harming our democracy, but more relevant to this article, our movement for a revolution in the mental health system is not financially sustainable, and bringing one vote to one person does not address the crushing poverty that prevents the number one stakeholders of our movement, psychiatric survivors, from being regular donors and sustainers of the work that must be done to achieve change.
For movements to exist, we need creative and administrative resources to connect people and get the word out to a larger audience, and launch legislative campaigns. We need hired creatives, ad space, public service announcements, computer systems, phone systems, rental spaces, training for activists, etc. We can’t achieve the conventional milestones of a social change movement on air and prayer.
The professional therapist class is not making regular donations to the few independently funded organizations such as MindFreedom International and other independently funded organizations with a track record of launching international campaigns of any magnitude. And the psychiatric survivors, despite all the passion, cannot pick up the slack financially. Psychiatric survivors need meaningful employment, either wage employment or creative entrepreneurship to raise their boats, enabling them to make donations to sustain the organizations they trust to lead the movement. Corinna understands the economic development is the key.
Many psychiatric survivors are struggling to get by on the crumbs of small disability incomes while stigma, lack of accommodation in the workplace, and other barriers keep psych survivors down. Some psych survivors have criminal histories or other histories that make it difficult to find employment in the first place. Giving psych survivors the technical skills and access to marketplaces that they need to establish their own businesses and the capital they need to help their businesses thrive is sorely needed. Vocational rehabilitation programs are under funded and many such programs train psych survivors to do meaningless, low paying work. Raising the incomes of psych survivors is one of the number one barriers to our movement’s success. No leaders and activists except Corinna seem to be raising this point regularly. Kudos to Corinna.
I want to thank survivor activists like Mary Maddock and her partner Jim Maddock, co-founders of Mindfreedom Ireland for speaking out loudly against ETC for decades, survivor activist Ted Chabasinski for leading a successful campaign against ETC in 1982 in Berkeley, California, Celia Brown and David Oaks of Mindfreedom International for leading an international campaign against ETC for decades, and newer survivor activists like Deborah Schwartskoff, founder ETC Justice for her grassroots organizing efforts, including organizing a picket protest in front of Kaiser Permanente in Portland, Oregon several years ago in partnership with Rethinking Psychiatry. It is hard to identify and thank every ETC activist, I’m sure there are many more but those are the names that stand out for me. For paradigms to shift, grassroots activism and direct action always have an important “first responder” role. Litigation will provide an important forum to debate the science of ETC but the key component of any successful campaign is always survivors refusing to remain silent, sharing their stories, and taking action
I meant probation not parole. Parole in the US is the term for a person’s conditional release after serving all or part of a prison sentence. Probation is often the term for a conditional release in lieu of a prison sentence. Sorry for lack of clarity
No, they do not. From experience. In the U.S. itt is very easy to get a court order forcing someone to take neuroleptics. If a hospitalized person in the U.S. refuses to be drugged, a ‘medication over-ride’ can easily be activated by the treating physician if he/she obtains the signatures of two, addition colleagues. To get a discharge, a patient will often have to sign a ‘conditional release’ form. This form often contains the conditions of their discharge (known as a conditional discharge). If they fail to comply with the conditions of their release, they can be rehospitalized. If a person is involved in the corrections system, even for say, a non-violent misdemeanor, taking medication can be written into the requirements of a person’s parole (breaking conditions of parole can make a person subject to incarceration). Medication compliance can be written into a person’s conditions of parole by a law enforcement officer or parole officer who has absolutely no knowledge of the risks and harmful effects of medications. Judges, who also no next to nothing of the risks of psychiatric drugs, can order that a person participate in an ‘Assisted Outpatient Treatment’ (AOT) program even if individuals are living peaceably in their own homes. AOT is a euphemism for forced drugging. In other words, a low wage mental health worker comes to a person’s house on a daily basis to witness a person taking his/her meds. My friend has a son who is labeled with schizphrenia and who was living with her. He was on probation for a non violent misdemeanor and a psychiatric nurse come to her house accompanied by an armed law enforcement officer to administer a depot injection of neuroleptics. It is a flagrant abuse of individuals rights.
My 80 year old mother had a large sarcoma in her lower back. The pain was excruciating and the chemotherapy made it impossible to keep food down. She was constantly nauseous. My brother got her to smoke marijuana and her appetite not only increased, she was finally able to hold food down. She enjoyed a complete recovery from cancer and lived another decade (she died of heart disease ten years later). After her recovery from cancer, she no longer smoked marijuana, and joked about her foray into crime (at the time it was illegal). The only sad part about that story is that my brother risked incarceration by purchasing pot illegally from a street source.
My son’s girlfriend was recently diagnosed with cervical cancer. She is suffering from chronic daily pain but she has a hard time tolerating the side effects of prescription painkillers (narcotics) so she tried CBD yesterday. She was embarrassed to ask her treatment provider for a medical marijuana card and not only did her gynecologist approve, he called around town to find a dispensary that offers pure CBD. She called me yesterday to report the CBD works! (She is taking half the dose of the narcotics with much better results and no side effects. She is pain free, in good spirits, waiting for the scan results to see if the cancer has gone into her lymph nodes. Knowing that she has a new tool in her tool kit to deal with chronic pain, has given her a new sense of hope and optimism. She reported that she is not groggy and ‘on edge’ as with the narcotics, alone. If this is placebo, it comes with a powerful body of anecdotal evidence behind it and we are now a part of this movement away from legally prescribed pharmaceutical drugs, many of which have wrecked lives more than the average MD is willing to admit. The marijuana prohibition for decades delayed people’s ability to experiment with this tool but we need more choices not fewer. It may need more regulation but be wary of ringing the alarm bell prematurely until people have had a chance to experiment judiciously with this new tool.
This meta analysis confirms what psychiatric survivors, their loved ones and allies have been saying for years, but our voices have been silenced as we have been systematically shut out of the decision making process, shamed, shushed, and ridiculed.
These ridiculous prescribing algorithms, created by industry and used shamelessly by practitioners of medical ‘science — people who should know better because of their supposed respect for empirical evidence—-‘ have resulted in over medication and great harm to our children.
It’s time to turn the tables on the epistemic authorities within this corrupted harmful mental health system and demand better alternatives for our loved ones, friends, clients, and neighbors. These people who have been harming our children with impunity, especially those precribers in ER’s, acute care facilities, state hospitals, and secure psychiatric facilities need to be exposed for their abusive practices. Augmenting one worthless dopamine binding anti-psychiatric when it is clearly causing akathesia and other horrific psychiatric symptoms ( aka adverse drug reactions) with another dopamine binding agent of equally dubious value will not help someone experiencing an adverse drug reaction or a paradoxical worsening of symptoms.
How many decades will it take for these shameful unscientific prescribing practices to be suspended and amends made to those who were deeply harmed through years of over drugging?? A complete turn over in the field of psychiatry via aging out and retirement of everyone in the field of psychiatry? The emancipation of all medical colleges and medical journals from big Pharma funding?
Stephen, Thank you for summing up these findings.
Patrick: Here is my two cents worth: Peer certification is not the answer. Certification of peer run organizations is the answer. My guess is that the organization that you represent would not pass a basis litmus test of an authentic peer run organization. The inclusion (51% or higher within leadership and management) of the voices of psychiatric survivors-especially those who identify with having been harmed by the mental health system either through involuntary commitment (loss of personal liberties) or by the lack of access to alternatives and choices —must be a basic criteria for distinguishing a peer run organization from other pseudo consumer advocacy organizations such as NAMI. What is needed is to offer more technical assistance, training, and seed money to peer run organizations and a way of standardizing not individual peer specialists, but standardizing organizations so that an authentic peer run organization can be distinguished from pseudo consumer advocacy organizations which take money from big Pharma. Let the authentic peer run organizations within each state set certification standards for the peer specialists within that state. No need to have national certification standards, too sweeping and too vulnerable to the obvious corruptive influences of government/big Pharma funding.
Thank you for sharing your perspective Stephen. Everything you described is accurate based on my observations when my daughter was locked up in the state hospital. Although the peer worker assigned to her treatment team was very sympathetic and comforting, even admitting privately that patients must ‘play the game’s to get discharged, there was very little the peer worker could do to obtain choices and non drug alternatives for a client.
You wrote: “Since we only have anecdotal evidence at this point that marijuana can aid any medical condition” but I think you are wrong. According to https://www.ncbi.nlm.nih.gov/pubmed/22716160 there is a body of evidence to support the idea that CBD may be a future therapeutic option in what we call psychosis. I have one adult daughter who is struggling with the incredibly difficult task of discerning how many of her psychiatric ‘symptoms’ are caused by original trauma (events stemming all the way into her childhood but also things that occurred as a result of psychiatric abuse (involuntary treatment, forced injection, coercion, restraints, isolation, loss of personal liberties, institutional betrayal by medical doctors etc.) and the psychiatric symptoms caused by the short and long term side effects of powerful “anti-psychotic” ( I use the quotation marks to denote that I do not believe they cure ‘psychosis) medications she was court ordered to take while being civilly committed for nearly eight years. You see, as one’s brain becomes habituated to these powerful drugs, one often becomes a shadow of one’s former self. The symptoms become harder to distinguish-how much is trauma and how much is attributable to the long term side effects of the drugs themselves? The legalization of medical marijuana has given us some interesting options.
My daughter wants to use pot to help her withdraw from meds that she finds even more debilitating than the symptoms of what we call psychosis in order to live safely in the community on her own terms and given some of the adverse drug reactions like akathisia I’ve witnessed while overmedicated, as well as the excruciating pain of acute withdrawal (micro and major withdrawals) which most prescribers arrogantly dismiss as the ‘original illness’ coming back, I would cautiously support an approach using marijuana if my daughter were given such an option. I would like her to have a chance to make her own decisions on what to put in her body and in a corporate environment, patients have become like cattle in a chute, not too many choices. Everyone is different. THC has some potential risks yet doctors like you who point out the most obvious risks of marijuana use are very slow to point out the risk of prescribing opioids, benzos, anti-psychotics, SSRI’s, etc. Pot can’t be much worse than the horrific and debilitating drugs my daughter was forcibly injected with such as Haldol, Thorazine, etc. etc.
While I agree with your call for more regulation such as a cap on the amount of THC in retail marijuana, I think you are throwing the baby out with the bathwater.
Ironically, early screening for depression in youth in our public school system has most certainly resulted in an up tick in the number of children being medicated with powerful medications that have never been tested on children. Many SSRI’s carry black box warnings for increased suicide among youth. Strange, how doctors have been very quick to recognize the dark side of THC which I acknowledge exists, but very slow to criticize those in the addiction industry and depression industries who are quick to get their patients habituated to powerful drugs with debilitating side effects.
Lael, I appreciate your heartfelt perspective and I honor you for your work with clinicians to support those who are stuck in the system. No doubt you have to work with some very unpleasant people who abuse their power at times, or take their privilege for granted. Your comment makes me wonder if we are dying on the wrong hill. Rather than focus on national certification for the purpose of reimbursement and job creation, perhaps we should be focusing on how to get more choices and power to the client such as putting each client in charge of his/her own treatment fund and employ a brokerage system? In other words, work with the repugnant Republicans who are always looking to cut back Medicaid in order to deploy innovative treatment/reimbursement models not dependent on the medical model, DSM, etc
Patrick, my daughter was involuntarily committed for nearly eight years and forcibly medicated with every drug imaginable. For eight years she was a human guinea pig enduring the most horrific adverse drug reactions and withdrawal symptoms that one can imagine.The loss of her personal agency when she needed it the most was deeply traumatizing and harmful. When our family needed hope and leadership at the national level, we looked to organizations like yours to take a clear moral stand on the issue of assisted outpatient treatment, telling the world the truth about force and coersion and how harmful it is to individuals recovering from trauma, your organization, abandoned our family. Your organization, with NAMI, supported the Murphy Bill which morphed into the Cures Act.How can you purport to represent human rights?
Well written, keep up the good work!
When I said ‘aspire to be normal’ I was referring to all my income level, the kind of car I drive, excessive consumption, mass entertainment, comfort objects I surround myself with, and chasing things that bring ‘status’. All of those things seem of little value compared to connecting with someone you love, a slow meal with friends, a gladiolus, a smile, and a small act of kindness.
Harper, you say:
“The survivor movement must broaden its focus and inclusivity to include those who do not have “severe mental disorders” as this is a vast segment of the population that is being ignored in this movement. Millions of people have mild anxiety/depression/etc and may take a prescription or see a psychotherapist, but never have experience in inpatient treatment, ECT, antipsychotic medications, etc.”
If you are talking about broadening the tent to include the ‘worried well’ well yes, it’s true that we need more people to understand that they have a dog in this fight so we are not just this small group of people singing to the choir. It would certainly be nice to exercise some real political clout for a change, not just stand around the abominable wreckage of legislation known as the Cures Bill like deer caught in the headlights. If one person’s rights are violated via the practice of coercive/forced/harmful psychiatry, everyone is at risk. We should all care.
My sister-in-law who takes anxiety medication or my niece who takes anti depressants will ever feel anything but fear and repulsion at the thought of being in ‘solidarity’ with my daughter who has that infernally stupid label of serious and persistent mentally ill
My daughter hallucinates and is out of touch with reality sporadically and we work very hard to create a welcoming home environment for her so she has a sense of belonging and safety to be herself. Her behavior isn’t violent or over the top but when she shares her world view and her basic experiences with others, outside the safety of our home, particularly with strangers, I can see people start backing away towards the doors. Strangers in public places don’t know what to make of her.
Organizing for change requires that stakeholders unite. Uniting requires that stakeholders communicate and feel comfortable with one another. People with general anxiety or depression are trying desperately to fit in, Identifying with the outcasts terrifies them. We can say that ‘mental illness’ is a spectrum and all of us are located somewhere on that spectrum since we all have emotional and mental challenges. As it concerns disability, aging assures that everyone of us will eventually be disabled. But the reality is that the terror of being ‘sick’ or disabled or ‘mad’ or homeless has most of us immobilized in a fog of fear that prevents us from reaching out to the outcasts.
As a family, we gave up long time ago aspiring to be ‘normal’ because we aren’t. Our healing as a family began when we gave up trying to maintain a facade of ‘normality’ Not sure what we are, I guess you could say we are ourselves. But I observe people where I used to be, desperately trying to stay under the radar by conforming to the neighbor’s expectations.
Oddly, it’s liberating on the other side. Giving up the need to be normal changes one self perception dramatically for the better. Tolerance is learned through a very difficult sifting process and burning away with laser precision, much of the crap we’ve a person has been conditioned to believe he/she needs to be happy.
Not sure if we could get my neice and my sister in law involved in the movement. They would spend their time at their first meeting smelling people and wondering why don’t people use laundry sheets and Glade like me, but I suppose its worth a try.
Frank, “Impoverishment in the midst of prosperity, deficits alongside surplus, and waste like it was going out of style” is well stated.
My daughter is very creative but seven years of being sedated/disocciated on powerful anti-antipsychotics has robbed her of the cognitive skills to do creative writing and many of the so-called arts The system needs very talented are therapists who are willing to work with the most psychologically damaged individuals. The art program at our community mental health agency is embarrassing. I think they asked staff at a staff meeting, “Do any of you do arts and crafts?” Whoever raised their hand was henceforth in charge of the shiny “art program” at our agency. Meanwhile, the authentic art therapists train to teach those populations most likely to receive funding outside the system (V.A. cancer survivors, geriatric, etc) I can guarantee our insurance will t cover this
Excellent production and confirmation of what survivors can collectively do to warn others.
This is consistent with the huge influx of letters received by MindFreedom International. About fifty percent of the current, written correspondence to MindFreedom are pleas for advocacy, assistance, and referrals from prisoners in distress, many of whom are experiencing the rigors of isolation and solitary confinement, sometimes due to their sexual orientation. The stories are heart rendering and MindFreedom doesn’t have the capacity to answer each and every letter.
It’s a tiny study but a good start. I want to commend the people who conducted this study, as well as the FEMHC for funding it. I’m thrilled that it was published. Praying that more and bigger studies in this vein will be funded in the future and that the body of data will grow until it becomes incontrovertible proof that the current paradigm of mental health needs to dramatically shift. Tens of thousands of individuals lives are at stake.
I’m ready to lobby the legislature in my state for creating new data reporting requirements and guidelines as it concerns funding and resources for people who want to safely withdraw from psych drugs. We don’t have the data I we need to make the case that we are driving up the cost of mental health services in the long run,, but we need whatever data we can get at this stage, for instance, what percentage of every states Medicaid budget goes towards mental health and more specifically, what percentage of MH dollars a goes towards drugs? I know what the pushback will be in budget strapped states. To make the case, we need a starting place. The VA has some pretty good data. Approximately.12% of the VA’s budget now goes directly to pay for drugs
Andy: Congratulations for weaning off a very powerful drug. I’m sorry to you are experiencing protracted inability to experience emotions. Hopefully, in time you will feel like yourself again. Thanks for sharing
I couldn’t agree with you more. Informed consent needs an overhaul, starting with an educational component, and it should be mandatory to watch a video of someone with tardive dyskinisia and the video should be produced by psych survivors and their allies, not the drug manufacturers. This should be mandatory. At least clozapine has a registry, unlike all the other typical and atypical neurloleptics. We need better long term tracking of the individuals who are forced to take these powerful drugs who haven’t had the benefit of learning the potential, long term harm they could suffer.
My daughter is on this drug and thankfully her doctor has incrementally tapered her dose to about 1/4 of the dosage she was originally prescribed. She is doing much better now physically and dealing with a lot of the repressed emotions that she couldn’t experience while being emotionally lobotomized.
I hope she can be safely weaned off this drug completely without having to deal with lingering, protracted withdrawal effects or suffer a major relapse. She has worked so hard to get here.
Thankfully, severe constipation wasn’t one of her side effects. But she had other horrible side effects, including incontinence, recurrent boils on her skin, jaw pain, vomiting, drooling, pin prick pains which I assume is called neuropathy, emotional numbing, extreme sedation (sleeping for sixteen hours a day) and headaches.
I would give this drug and many others in the same category a big thumbs down. Hearing voices support group, liberty, employment, swimming, yoga, and mindfulness training have been much more helpful than these drugs with zero side effects.
The algorithm referred to in this article makes it out to be more elegant than it really is. It has nothing to do with computers. Presribing algorithms are nothing more than charts of unbelievable simplicity developed by drug companies with no scientific merit whatsoever. They would be more aptly named ‘Psychiatry for Dummies’. If you saw the playbook used by some psychiatrists, a practice condoned by their guild, you would be stunned by the colossal waste of spending four years at medical college for anyone who bases his/her practice on following anything as ridiculous as a prescribing algorithm authored by a drug manufacturer. I’m embarrassed just thinking about it. An auto mechanic and a plumber has more integrity.
Bonnie, well stated
Bramble, can you please cite your source for half of all shock in the U.S. is by force? I have not been able to find any solid data on the population of involuntarily shocked people in the U.S. It seems shrouded in secrecy and I would like to distribute this data to other activists. Thanks.
Thanks for writing this. I am going to send a copy of your article to the resident psychiatrist of the private hospital where my daughter was admitted over five years ago. That doctor wanted to shock her out of catatonia. Our daughter audibly said “no” to the Director of Medical Ethics who sat by her bedside and patiently interviewed her. She has a long recovery road ahead of her after years of toxic drugging but thankfully, she didn’t get permanent brain damage from shock.
This is an incredible story on many levels. Thank you for sharing. I hope you find a wider audience for your story outside this community. Other parents like me need a campfire where we are able hear the stories of psychiatric survivors, especially the ones that don’t get published in the mainstream media, so we can weigh and sift, until we are able to connect the dots to our own families, rediscovering our children from underneath the pile of labels that they have been given.
Underneath all of the hopelessness, fear, and despair, our children are still the wonderful people that they have always been, but many of them have been living a lie for years, developing a pattern of evasion, misleading and lying to counselors, friends, and doctors, disguising their real problems, secretly nursing the hurt of their institutional betrayal, terrified that they will be locked up, restrained, forcibly injected, or shocked, if they make the smallest of mistakes.
Many of our children do not identify with their labels but if an individual seek alternatives or rejects psychiatric treatment the stigma is overwhelming.
A psychiatrist recommended that my 20 year old receive ECT as she lay helpless and catatonic in a hospital bed. Terrified, I sought for legal protection, only to learn that people considered to be severely mentally ill have no legal rights. The Director of medical ethics at her hospital took the time to sit beside my daughter’s bed and patiently explain what was at stake and she was able to elicit a simple verbal ‘NO’, which thankfully, was enough to make the psychiatrist back off.
But the experience of her dodging ECT was a wake-up call to me. We parents have to awaken from our collective stupor and shout loudly with our children: “No more harm!” We need to organize for choices and alternatives and better parent education than what is currently offered by NAMI.
Since my creative, loving, and attractive daughter was diagnosed with schizoaffective disorder, she has been receiving psychiatric treatment for eight years, often by force. It is very hard to distinguish between her original trauma, the psychological trauma of having her rights taken away, and the side effects of her court ordered drugging.
She is slowly tapering off the medication and seeking alternative treatment modalities such as a monthly ‘hearing voices’ support group and Icarus Project. Differentiating between withdrawal symptoms, post traumatic flashbacks from psychiatric abuse, and her original trauma continues to be a challenge but hearing these stories helps a lot!
Every day brings new opportunities for healing and I am grateful that she is getting more appropriate treatment. But still, there are more questions than answers.
I am very skeptical of claims that people positing that there are no organic contributing factors to ‘mental illness.’ I want to be in solidarity with all psychiatric survivors but this seems unrealistic given the range of views on this site.
I don’t want to invalidate my daughters experiences, even the ones she has trouble describing. If I say to myself her so called symptoms are simply the result of her being gas-lighted or that there is no such things as ‘normal’ then I am closed to the possibility that she needs help dealing with profound handicaps having to do with faulty perceptions, feelings, and thinking. If I say that she has an organic ‘disease’ than I am at risk of invalidating her trauma and all of the painful circumstances that contributed to her present state, which is even more complicated, because once she was started on neuroleptics she exhibited new psychiatric symptoms, so one has to constantly question the loved one’s behavior and what is the origin and what does it mean? And that doesn’t even include the spiritual model!
This essay confirms what many parents are starting to suspect, that problems having to do with their child’s perceptions, feelings, and thinking may be associated more with trauma more than they previously wanted to admit. Moreover, it validates what more and more parents are starting to think, that under the medical disease-centered model of mental illness, the ‘experts’ know next to nothing about how to support people in distress who are trauma survivors; indeed, from my daughter’s experience, psychiatrists seem more expert at compounding trauma with stigmatizing labels, hopeless messages about broken brains, forced injections, restraints, and the threat of institutionalization.
But what this essay does in spades is that it suggests that we need not throw out the baby with the bathwater by claiming that there are no biological contributors to mental wellness/illness.
Boutique studies like this one regarding inflammation as a possible etiology for ‘schizophrenia’ filtered down to the clinics five years ago and now patients routinely wash down their daily cocktails of neuroleptics, benzodiazapines, SSRI’s, and mood stabilizers with a fat Omega 3 fish oil tablet.
The same thing will happen with copper and zinc pills if these studies filter down to the community mental health clinics. If they’re cheap enough, docs will throw anything into the mix. That way docs who exercise complimentary, nutritional approaches while dispensing the standard neuro toxins, can appear as ‘open minded’ when in reality, they will continue to hold the greatest contempt for professionals in the field of nutrition, orthomolecular or naturopathic medicine and virtually anyone who challenges their authority.
Frank Blankenship is right. Release the inmates, then talk about nutrition, but before you empty out these places, identify those inmates whose toxic cocktails resulted in uncharacteristic violent or criminal behavior, akathesia, aggression, etc. pay them a small fortune in return for the suffering and loss to their reputation.
Yes, food in institutions suck. It’s full of gluten, dairy, high in carbohydrates like sugar, artificial preservatives, and most of the meals are prepared from highly processed, reheated frozen and canned ingredients. Ironically, soda pop is used as a behavioral ‘incentive’ at some of these dumps. But the nutrition piece seems to pale in comparison to the psychological torture of being medically kidnapped, deprived of one’s privacy and liberty, denied access to fresh air, and sunshine. And that is not counting restraint, seclusion, forced injections, and ECT.
My daughter, a country girl, who loves nothing better than walking barefoot and swimming in the creek, was forced to live for several years in a large concrete box surrounded by barbed wire. Her exposure to nature was limited to watching Animal Planet on TV and her company was limited for months on end to people in various states of distress, screaming, crawling, crying, or shuffling back and forth in slippers and bathrobes, while nurses peer out from behind bullet proof windows . For stimulation, she was herded around to activities such as ‘art class’ where full grown adults, some of whom had advance degrees, were given coloring books and crayons and told to ‘color’, where patients could play a broken piano, in a urine stained ‘music room.’
With the ‘Cures’ bill calling for more beds in facilities like this, I think nutrition is the least of our worries but anything that helps without hurting is a worthy project.
Great news! Thanks for sharing! This roll out should be successful and I anticipate this project will expand the MIA audience significantly because of the good design and planning.
In particular, I like that it builds on existing radio shows and considers them as affiliates, not competitors. Don’t forget to invite MindFreedom International which has a very rich archive of interviews featuring experts from Dr. Peter Breggin to Dr. Laura Tenney on its web radio show. MFI’s radio show hasn’t been active since David Oaks’ retirement from MFI but the archive of recorded interviews is stunning in it’s breadth and quality.
Steve: I agree with you partially but I think it gets even more complicated than what you suggest. Not everyone metabolizes drugs at the same rate and individuals who are self medicating the side effects of their drugs with other substances such as nicotine, may be affecting the metabolism of their prescription drugs even more, making them build up to toxic levels in their bloodstream or rendering them ‘sub-therapeutic.’ Once again, it goes to the heart of why are we court ordering people to take neurotoxins when we know so little about how they will affect people, who may have a near infinite number of responses. When you consider polypharmacy, which isn’t even tested for safety, it gets even more complicated If I was convinced that psychiatrists and other prescribers actually listened to their patients and would take into account individual differences and would take the time to get to know their patients and build a trusting relationship with them, then it would make sense to talk about dosages. But even questioning the dosage with a prescriber is not necessarily a safe option for some individuals. Questioning the dosage may result in another psychiatric diagnosis such as personality disorder, being oppositional, having anosognosia, etc.
Steve, this goes to the heart of the question, why have professionals in the field of mental health in the first place? Why not teach regular people like me practical skills like non violent communication and emotional CPR?
I think professionals fool themselves into thinking they can remain objective while struggling to meet the standards of conduct dictated by their
I think the best qualities that any caregiver or treatment provider can bring to the table for people in distress: a sense of curiosity, an ability to suspend judgement, and the ability to maintain perspective. I’m not sure how much of this professionals can learn in school. In fact, many of these qualities may actually be considered suspect and individuals who exhibit such qualities may actually flunk or wash out.
When Dr. Mosher established the Soteria house, they experienced enormous success by hiring staff who did not have training in psychology and other traditional precursors to counseling. That having been said, I do regularly seek the services of therapists and counselors.
Then again, it occurs to me, what harm is it really, if a care receiver emotionally nurses a caregiver at times? Isn’t this the normal give and take of people in relationships? Why would we expect that a person, even one in the deep throes of distress, is incapable of emotionally supporting and/or nurturing others?
A person who is already reeling from a lack of identity an a severely battered self esteem stemming from the “ceremony of degradation”–not sure who gets the credit for that term–represented by psychiatric diagnosis and psychiatric harm–may actually benefit from such a dynamic. People who have the resilience to rebound emotionally from the harm inflicted by them by well intended treatment providers and family caregivers have an amazing ability to offer appropriate insight and emotional support to other non-psychiatrized individuals. It may well be that such a role reversal from care receiver to care giver is the means to find the ‘way back home.’
This summary was not written for a layperson. I was searching for the ‘nugget’ in the hopes that there is some take away from this study that could be applied to my own situation with my daughter, especially because as Steve McCrea pointed out, caregivers can inadvertently cause a role reversal in which care receivers must nurse the caregivers emotionally)
My frustration with this summary is that the nomenclature used is not the language of real life. Don’s comment captured the spirit of frustration I feel around this study because it was based on fictional relationships. The heavy use psycho babble made it inaccessible.
For family members who are caregivers for a loved one in distress, what are real-life techniques for avoiding compounding the distress felt by a loved one? Not sure if this study offers anything practical to the body of knowledge already in existence, such as that accrued, as Don points out to the efficacy of peer support.
We were told by our daughter’s social worker that our daughter had a disease like diabetes and would have to take meds for life. We were also told she needed ECT. She was civilly committed eight times, forcibly drugged, restrained, and institutionalized for eight years but we never gave up hope that with compassion and solidarity and empowerment she would come through the other side.
By a stroke of good luck a board certified psychiatrist who is smart enough to question the industry funded data of his profession and who is too young to be cynical is in charge of her outpatient treatment now. He uses accupuncture, prescribes dietary supplements, and is cautiously tapering her.drugs down. He also listens and his very compassionate. She is now on a fraction of the original dose she was on when she moved back home, does volunteer work in the community, gardens, pursues art, music, and yoga.
She is doing very well. The drug induced akathesia and other adverse drug reactions she was experiencing for years went unrecognized. She knew all along that the drugs she was forced to take for years were themselves causing psychiatric symptoms, immobilizing her socially, cognitively, and physically, forcing her deeper and deeper into her own world, perceiving odd thoughts she could not articulate.
She is finally starting to climb out of this drug induced prison. We are are somewhat adjusted to the fact that she may never receive any restorative justice for the violation of her rights when she was forcibly treated, and for the iatrogenic harm.
My biggest regret is that we don’t have the means to support dozens of people like our daughter, providing sanctuary for individuals who need care and support while withdrawing from harmful psychiatric drugs. There are hundreds of thousands of people out there who need love and support not major tranquilizers. What are we going to do?
Rossa, thanks for the kind words and advise. I think I see your point in the futility of finding someone helpful in the ‘system’
Being’off the grid’ in the sense of being emancipated from psychiatric services and other services which are paid for by the state is in itself a sign of recovery, leaving individuals and families more time to pursue those creative people and living communities that promote health and wellness through connectedness and community building because after all, isn’t that what we are all searching for?
After nearly seven years of conversations with my daughter, you are correct about “recurring themes” becoming apparent. Many of them have emotional force behind them. We’ve learned that the paradoxical nature of the medications is that they actually make it harder, not easier for people to process strong emotions. As my daughter’s current psychiatrist lowered her medications to a fraction of previous levels, and she was given the liberty to move into her own place, as opposed to a secure psychiatric facility or a foster home, the energy required for her to be heard has diminished and the emotional force behind her symbols has gone from roaring to chatty. The symbols and the patterns are easier to discern when the conversation is calm and I think that more and more parents are starting to understand the paradoxical nature of medications and that for many, they create more problems than they solve.
I’m convinced that much of the behavior that gets labeled as ‘psychosis’ when people are locked up goes hand-in-hand with the tremendous effort it takes to being heard ‘Psychotic rage’ seems to me to be some individuals trying to force other people to listen to them. And then there are adverse reactions to medication that we are only starting to honestly deal with.
Clearly, some people are practiced in the art of deafness and mental health professionals in particular even get rewarded for their deafness by appearing to be more distant and ‘professional’. As parents, we don’t have the burden of the professional who aspires to be right, just the knowledge of the joy that awaits our family when our daughter is restored to good health and vitality and purpose.
Anyway, this was an interesting blog and I’m encouraged to see at least one clinical director is lamenting that something is missing from his profession.
Mary, I just got the reference to Harry Potter and had a good laugh out loud. Thanks!!!
Mary, I consciously try not to ‘nod out’ or ‘blank out’ when she has expresses a stream of consciousness but there is so much information that my brain is simply not capable of processing it all. If I were a genius or professionally trained to filter the information based on a legitimate framework or reference I muse that I may be more helpful. But alas, my brain is slow and the most I can do at times is consciously work at not judging because I tend to be very critical.
There is so much information coming from her, that I can’t even memorize it to recount it to someone is a genius or better trained than I. Since her dad is a poet and a songwriter/musician, his interactions with her seems more punctuated with joy than mine. I hear them laughing a lot in the other room, singing, rapping, drumming, playing the piano together, etc. and sometimes they try to ‘outpun’ one another. But I don’t have my husband’s creative gifts so that window is not available to me. My focus is to get my daughter to stay clean, have good hygiene, get out when possible to socialize and volunteer in the community, and help her wean safely off the medications that make it difficult to do all of the above.
I think there is a lot of hope in our situation, we have very helpful friends and extended family members and I can’t count our many blessings but it would be nice if we could trust someone in the ‘system’ to hear every family members story, provide some insight and encouragement on a regular basis and support our daughter’s desire to live a med free existence. It seems that the medical or disease model has filtered down to the rank and file of every professional in the ‘system’.
Thanks Sam and Mary. My daughter is really well read and cites a lot of books I haven’t read. I will look up the books you recommend. If you think of any other books, please let me know.
I think the question to ask is, can psychoanalysis treat psychiatry? It has an extremely big shadow
Kudos to you for trying to change the system from within. I am very keen for my daughter to find a therapist like you or a shamanic practitioner who will take the time (years, if necessary) to help our beloved daughter sort out all of the symbols of her visions and dreams (she experiences her dreams while awake) and help her lay the groundwork for living daily in consensual reality, a place which isn’t really all that bad, after one has learned to put even the bad things that are out of one’s control into perspective.
She is a very attractive, intelligent and expressive individual, cherished, creative, and well loved but we don’t yet have a shared language or vocabulary to navigate through this world together and her father and I don’t have any training in psychology or Jungian theory, or process work, so our daughter keeps conveying information to two people who have no idea how to process it! There are very few non medical model resources and trainings for parents like us who want to remain in solidarity with our loved one, not negate her experiences, including the extreme states labeled as ‘psychosis’ and there are even fewer practitioners who use the approaches you described.
Her father and I seem to be the only consistent walls against which she can bounce her ideas and thoughts, People who are stuck in the mental health system, on average, move around from hospital to foster home to psychiatric facility every six months and with every ‘relapse’ the cycle starts over. With every move, diagnosed individuals are assigned a new set of medical industrial contractors, each contractor embraces his/her pet theory or framework, and each must start anew to hear her evolving story, a time consuming task that many dispense with, in favor of fifteen minute ‘med-checks’. Since mental health care workers who work in an industry that is rife with high turnover and burn-out, sometimes a particularly sympathetic counselor will take the time to listen to her story but they disappear professionally on short notice. Now, she is home at last and I hope we can establish some continuity.
Moreover, the ‘therapeutic alliance’ we heard was the foundation of good therapy was severely damaged during her first ‘break’ from reality in which she was forcibly injected, restrained, and institutionalized though she was no threat to herself or others. Hardly an auspicious start for anyone to ‘share their story’ no matter how sympathetic a psychiatrist may be. A person in your profession should be aware of the impact that psychiatric abuse has on individuals.
For years, we have tried to remain sympathetic with our daughter’s voices and visions, and we try to cultivate curiosity, and we strain to avoid being judgmental or pathologizing even if she gives voice to some offensive, taboo ideas, which is quite often. For years, we have been receptacles for an enormous amount of information that she conveys to us nearly on a daily basis (except on the days when the drugs her brain is habituated to cause her to remain for hours on end in bed). Sometimes she convey these strange visions and dreams with great emotion, sometimes without emotion.
Her unusual beliefs which the medical system calls delusions are often quite poignant and harmless. She often thanks me if I “humor her” (her word, not mine) by talking about her symbols sympathetically without judgement.There are delightful times when her poetical expressions are very pleasant, sometimes she is a mixed media artist, combining sound, mime, music, and story telling. Sometimes she is an enigma, using silence and humor to shake up our entire household, so much so that I did some research on court jesters. Did you know that the last documented court jester in the English Court was in the late 1700’s? The demise of the court jesters roughly corresponded with the Age of Enlightenment.
And of course, she often expresses unpleasant but insightful truths about our family dynamics, that incite strong emotional push back from other family members, but strangely facilitate all kinds of healing in the most unexpected, unorthodox ways.
If our ‘mad’ daughter had a purpose in society, she would not be so lonely and our society might give her an opportunity to live freely without fear of being institutionalized, forcibly medicated. I think we need to repurpose madness from being a ‘drain’ on society to a condition experienced sometimes by some people to keep the mighty from being too mighty.
That would be horrific if his son committed suicide. And I think you should reconsider your comment, otherwise, I or someone else contributing to this discussion may be inclined to report your comment because it implies a callousness that I’m sure you didn’t intend to imply. I like to think that Pete Earley, like most parents, would give anything in this world to have his son be vibrant, healthy, independent, safe, and happy and that he would be glad to admit publicly that his public embrace of the disease model may be in error. Please beware of the impact of your words. (-:
I am glad you mention South Africa. Nelson Mandela’s miraculous rise from prisoner to prime minister is a constant source of inspiration, especially when I feel hopeless thinking about the discrimination and enormous abuses of power within the mental health system.
I agree with everything you said, including the point about the trauma experienced by powerful and wealthy CEO’s and doctors.
Keeping it to NAMI, a organization that is distinctly different from other consumer advocacy organizations because it is led by family members, not consumer/survivors, is NAMI redeemable? If not, we need a place for disenchanted NAMI members to migrate to, one in which the voices of survivors are valued alongside the voices of traumatized family members.
NAMI’ astonishing support of forced treatment in regards to the CURES Bill should send shivers down the spine of any parents who are beginning to question the disease model of ‘mental illness’ or more importantly, parents who have witnessed the dramatic decline in health and vitality of a cherished son or daughter after he/she received years and years of standard psychiatric treatment.
The trauma of psychiatric abuse is different from the trauma of someone who is witnessing it. Being on the sharp end of the needle, so to speak, is a world away from empathizing with one who is, but there are some overlapping places where both the psychiatrically abused as well as the witnesses may come together.
For instance both the abused and the observer may both feel powerless at times, to stop psychiatric abuse on an individual level or on a policy level. Both parties may feel that it is hopeless to seek restorative justice for past harm or discrimination under the current paradigm. Both parties may have experienced being ignored, dismissed, ridiculed, or worse, become the target of retribution for attempting to speak truth to power within the mental health system.
If we are indeed starting to turn the corner as a society and change the paradigm of mental health care, and more specifically, if NAMI is going to maintain any shred of legitimacy as a “consumer ‘ advocacy organization, then several dialogues have to bear fruit. One important dialogue involves two disparate audiences within the NAMI community.
The first subset or audience is characterized by Pete Early and parents like him. These folks stand behind the legitimacy of the DSM and are OK with the disease model of mental illness. They identify with the diagnosis of their loved one and their main beef with the mental health system is not psychiatric abuse but psychiatric neglect. In other words, those who feel that there are not enough services for the ‘mentally ill’ in general and they do not see much of a problem with bad outcomes, dehumanizing or disempowering treatment, and iatrogenic harm.
The second subset of family members are people like myself. We are intensely dissatisfied with the lack of choice and alternatives in the mental health system and we decry the fact that individuals who do not embrace the disease model or large chunks of it, encounter a ‘love it or leave it’ attitude by mental health care providers. We are outraged by the lack of quality data and the economic and corruptive forces at play in mental health research.
Since there is relatively little data on this, I don’t know how big each audience is. I feel like I am in the minority when I attend NAMI type events but it’s hard to say for sure. I do get the sense that things are changing but the changes I observe are coming from younger professionals just graduating or entering the field of mental health and parents whose children are just starting to receive psychiatric care, not those who have been in the system for decades.
I think direct action against NAMI national is warranted if only to shine national media spotlight on NAMI and warn the newer generation of parents about the dangers of building their entire support network around an industry progaganda mouthpiece and the risk of prematurely adopting the disease model in regards to a loved one’s crisis.
Thanks for starting this dialogue which needs to spread to the community of users/allies outside this community. To have a dialogue, you need participants who are willing to self-reflect and re-open old wounds. You need facilitators who know the depth of pain felt by family members of consumers/survivors. The leadership of NAMI has proven itself to be extraordinarily unable to self reflect, as demonstrated by their yanking an invitation for Robert Whitaker to speak at their annual conference and the blow-back from parents like Pete Earley when this invitation was re-issued.
Individuals experiencing trauma are vulnerable to exploitation. The parents who started NAMI are no exception to this. Parents have been traumatized, right alongside their diagnosed loved one. They have driven around big cities searching for their loved one at three in the morning. They have mobilized extended family members in a sweep, searching for someone among garbage dumps, waterfronts, and seedy bars. They have received calls from jails at four in the morning or lain in bed on countless nights waiting for that call. They have swept up shards of glass and literally put out household fires. They have filed missing person reports and called every hospital in a three county swath searching desperately for someone their heart aches for. They have logged countless hours visiting their cherished one in mental hospitals while secretly longing for an opportunity to punch that staff member who was unctuous, patronizing, or dismissive. They have witnessed their loved one restrained, forcibly injected, and isolated and they were enraged and crushed at the ugliness of psychiatric force and coercion and they wept at their powerlessness. They have prayed until they begin to doubt the existence of a compassionate Creator.
Big Pharma and the APA swooped down to NAMI in its infancy and exploited this desperate population of family members. They floated lies to parents about miracle chemical cures. And parents, exhausted and traumatized went for the lie. Rather than helping parents take responsibility for their anger, grief, and fear and finding a way to keep the lines of communication open with their diagnosed loved ones, NAMI offers an easier route: seeking the magic pill solution that would require no further blood, sweat, and tears. Offering stability over recovery.
I see that one ally, Sam, above noted that he had to take responsibility for his anger before he could support his wife’s recovery. NAMI does not teach family members to take responsibility for their own sh*t. What they do provide is milk and cookies for family members and a roof under which people can experience fellowship after years of shame and stigma. NAMI should teach that recovery is a joint venture and that individuals in a community can remain in solidarity with someone who is experiencing extreme states. But the fear experienced by parents is overwhelming. Setting the bar low is a long process that happens incrementally. The goal becomes to have few run-ins with the legal and medical system, even when court ordered treatment becomes a reality and the ‘therapeutic alliance’ is broken beyond repair. Regaining control or maintaining control becomes, by default, the new goal, not recovery. Stability is the new mecca, not harmony, not joy. A dread of going backwards and re-experiencing the worst that life has to offer becomes a terrible portal that must be locked shut at all costs. Losing what little ground was gained from the most recent crisis resolution is the mantra.
If an individual can get dressed in the morning, be non-violent, and fix a sandwich, that is considered ‘recovery’ by some parents. No matter if that person is obese, diabetic, has gall bladder disease, tardive dyskinisia, etc. No matter if that loved one does not have any meaningful purpose in the larger community, no employment prospects, no friends, no romance, no adventure. At least they are alive. It’s a hollow victory to be sure. The longer a loved one has experienced psychiatric harm and coercion, the harder it becomes to keep hope alive and incrementally reverse the lowering of the bar. Kudos to those families who manage to reverse this tragic decline in standards, alone, with very few supports. They will not reverse this process with the help of NAMI. NAMI enables hopelessness or renders the standards of what constitutes recovery to be nearly meaningless.
I am a parent who attended (but later dropped out of) NAMI’s ‘Family-To-Family Educational Program.’ Participants like me were each given a Second Edition version of ‘Family to Family’ written by Joyce Burland Ph.D. National Director of the NAMI’s Family-to-Family Education Program. The study guide clearly states that the development and distribution of the materials was directly funded by an ‘unrestricted education grant from Bristol-Myers-Squibb and Otsuka American Pharmaceutical Inc.”
It was very traumatizing to read controversial medical propaganda in the packets we parents were given, such as a copy of a controversial article by Daniel Goldman providing ‘irrefutable proof” that schizophrenia is caused by structural abnormalities of the brain. No opportunities to discuss the validity of this junk science was provided to parents like me who have read articles refuting this evidence. No alternative treatment modalities were discussed and no paradigm other than the medical disease model were presented as the basis for diagnosing and treating extreme states known as ‘psychosis’
Educational alternatives are starting to crop up here and there. For example, parents can take a class entitled ‘Families Healing Together’ offered by the Foundation for Excellence in Mental Health, which stands in stark contrast to NAMI’s educational program. Educational approaches which stress recovery, hope, psycho-social approaches, and the role played by trauma, grief, and shame are infinitely more helpful but are in their infancy.
I think activists for human rights in the mental health system (as defined by choices and alternatives to the medical model because how can their be rights if there are no choices?) should target national and state NAMI organizations for direct action as David Oaks and other activists did when they fasted and called for the APA to provide proof that mental illness is caused by a chemical imbalance) and seek to build coalitions with other consumer advocacy organizations who, like us, do not accept industry funding. I hope MindFreedom affiliate organizations will take the lead in organizing such actions. Since MindFreedom is one of the few consumer/survivor organizations left standing which does not receive any ‘system’ funding, it think MindFreedom is uniquely positioned to lead this effort but it would be helpful if activists who working for organizations which do accept system funding would renew their MFI memberships and/or renew their commitment to direct action.
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?
Uprising: Thanks for the kind words. There are many reasons to celebrate. Our family is together and our daughter is safe and loved.
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.
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?
Your aversion to ‘surrendering to the crowd’ is in alignment with this https://www.madinamerica.com/2017/02/desire-fit-root-wrongdoing/
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.
BEautiful article. Thanks and keep up the good work
Feeling Discouraged: If you are great at figuring out social situations, and what ‘motivates’ people does that give you a social ‘advantage’ or ‘disadvantage’? Or a combination of advantages/disadvantages?
I don’t have words.
John: The article you cited isn’t a MindFreedom article. It comes from another organization called Freedom of Mind, an organization that deals with cults.
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.
That having been said, you sound like a marvelous counselor. Wish my daughter had received help from someone with you passion and knowledge
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.
What did you learn, during your trials with your son, about the available tools that professionals possess to make an accurate diagnosis in regards to this disease?
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
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.
I meant to say hospitals dump and release patients they have harmed with ‘impunity’ not ‘no impunity’
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.
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, https://www.madinamerica.com/forums/forum/psychiatric-drugs/ (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 http://rxisk.org/ 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?
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
Steve: Thank you for pointing out the obvious! I was going to post a similar comment but you stated it so much better. The assumption that my daughter’s poor cognition (memory, ability to concentrate, etc.) is a symptom of my of my daughter’s “disease” and not due to the clozaril she is taking, is insulting to say the least.
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.
Your kind words are very appreciated. From one mom to another, THANK YOU!
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!!
Lavender Sage: Thank you for the kind words.
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.
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.
I fear that parents are the biggest impediment to recovery oriented services; not psychiatry.
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.
Great post, David
As someone who practices religion, I don’t think you should raise psychiatry to the level of religion. It’more like a combination cult and ideology.
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.
Why are people who are involuntarily detained in a psychiatric facility not eligible to take this survey?
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.
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.
The MIA headline for this abstract seems a little misleading and readers of the abstract are bound to be disappointed. The abstract reads ‘It is unclear whether anti depressants prevent suicide or suicide attempts’ not
‘Anti depressants do not prevent Suicide’ as stated in the MIA caption
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!
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.
80% of all psychiatric medications are prescribed by primary care doctors
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.
Thanks for giving an example of an environmental toxin that might affect a child’s behavior. If you are a parent in Flint Michigan, you may be very concerned about the lead in the drinking water and and a learning disability or cognitive impairment caused by toxins, then a bogus diagnosis of ADHD with all of its drugging on top of that.
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.
Frank, bravo! This was the best and most succinct response to thus whole issue is what to replace psychiatry with. Thanks!
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.
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.
Clear-cut or not, how do you think corporate-controlled press will spin this? Will it result in even more stigma for the mentally ill or will the prescribers/Big Pharma be held accountable?
Thanks for the kind words
Dr. Moncrieff: May I sugggest that you and others cease to use the term anti-psychotic which, in my opinion is a marketing term and not grounded in reality for at least eighty percent of the people who take them? Neuroleptics would be a better term.
Will this be a double blind study?
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!
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.
First they ignore you, then they laugh at you, then they fight you, then you win.
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.’
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.
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.
Well stated travailler-vous! I like comments!
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 !
I have a friend who is Schizophrenics Anonymous so I resent the comparison. Perhaps could you change your statement to something like: “I would rather be treated by Sarah Palin’s speech writer?”
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
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’
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: https://www.facebook.com/helen.nilon/posts/10206735211352363
“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?
I went tothe global research site you suggeated and it liked pretty legit (quality) but I could not locate the specific article you were referencing.
If you look closely at the map, you will see that this model does say something about trauma as a contributor to depression. See #6 on the map labeled “early adverse experiences”
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.
“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.
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.
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.
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’?
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.
I agree with David about the importance of always attempting to dialogue with mental health professionals. If one has a loved one who is unfairly locked away for years in an institution, it is CRITICAL to maintain an ongoing dialogue with professionals. It is critical to maintain a light on the situation and remind the treatment providers at every turn that the person they are treating matters and is loved and that the treatment decisions they make have a huge impact on their patients. At every opportunity, I present data that professionals are not used to seeing in order to get them to question their clinical practices. I do it for the sake of my loved one. Abolishing psychiatry is not a wise position to take publicly, if one has a loved one trapped in the system. Otherwise, I can get thrown out and barred from visiting my daughter. As parents, we have no power, no legal recourse as it concerns our civilly committed daughter, and every day, we are at risk of reprisal if we say or do the wrong thing in the presence of her treatment professionals. To suggest that dialogue with professionals is unimportant may apply to people who are safely emancipated from the mental health system who have the luxury of viewing the mental health system from an ivory tower and but for the rest of us with loved ones are at risk of ongoing psychiatric harm TODAY, dialogue is VITAL.
Can I share this blog entry by sending my friends a different link, one that leads directly to the World Health Organization that published it? That would impress even my most cynical friends….
Beautifully stated and very inspiring, but after reading this, I found myself wanting more!
When is the next blog? I can’t wait!
Thanks, as always for your leadership and optimism
Warmac: Good statement
These words ring true. I think you should write on this site more often.
Stephen, well stated! My hearts go out to autistic people who were given psychiatric drugs and have had to endure terrible side effects, compounding what already is a difficult situation. Not all families can resist this tremendous pressure to drug their children, including kids with so-called ‘ADHD’. What a mess. How can we unwind this massive problem?
Well stated Cindy! Thank you for your activism to protect our children and help build sanctuaries for them.
Thanks for sharing this. Words can’t express what your comments made me feel. I applaud you for your courage and for sticking to your truth despite all the naysayers.
Perhaps everyone who has experienced profound grief, loss, or trauma would benefit from the kind of workshop you attended in Poland. Regardless it is getting harder to find individuals who are not impacted by war: OIF/OEF, Vietnam, and WWII vets, death camp survivors and their descendants, political refugees.
Thanks for the warning. I won’ t go out of my way to view any slick retelling of the morally bankrupt ‘anti-stiga’ narrative. Already had my fill. Pity they took David’s quote completely out of context. Can people who are significant in our movement exercise greater control over the use of their image/words in such ill- guided propaganda pieces?
We often arrive in your office skeptical.
Great article. I would like to point out that we are living in a time when good counseling is no longer good enough. Great counseling is what it takes to help families reach their fullest potential. We only reach out to you when we are experiencing pain, distress, and problems.
I don’t understand. One of the articles you cited (heliobiology) has the following disclaimer: “The following article is from The Great Soviet Encyclopedia (1979). It might be outdated or ideologically biased.” Huh?
I forgot to say that protests are educational too and teach ins can tie into protest events. Protests with good turnouts garner media attention which are great for getting out a message(s). What is the message? When a large coalition of psychiatric survivor and consumer groups has hashed out its differences long enough to come up with a set of national priorities, the message will be evident I think.
It’s time for teach-ins as with the Students Organizing Committee during the Vietnam War to teach people about the history of how humans have dealt with human distress and extreme states of the millenium. We clearly need to move in several, parallel directions: legislative change, policy change, and cultural change, the last category unfolding through a massive campaign to unbrainwash the public about the nature of ‘mental illness’ (for starters that all human suffering cannot be reduced to chemical brain imbalances) I believe that the political activists you are seeking are often involved in the other aspects such as policy change (inside agents of change such as peer providers) and are ready to attend protests and sign petitions when a platform or agenda has been formed. An agenda or national platform requires coalition building to take place before it can go forward. The legislative change is vital to prevent further erosions of civil liberties. The policy changes are necessary to transfer resources from programs and services that make people chronically ill and dependent and the last: cultural change through education and the arts is critical so that the first two get the support we need for the first two. I hear your frustration about the activism not being evident but I do feel that on the other fronts, there is a lot of progress and they are all important.
Thank you for writing this piece. Reading this makes me feel less on the fringe. When someone with education and credibility makes the case, as you just did, that political disenfranchisement and psychiatric profiling go hand-in-hand, then it becomes harder for psychiatric abolitionists and/or reformers to be dismissed as ‘crackpot’. As David Oaks has pointed out on numerous occasions, activism is the most undervalued and underfunded ‘therapy’ for psychiatric survivors, trauma survivors, and their loved ones. Moreover, sanism stands at the nexus of every other social justice issue of our time. In other words, this issues ties all the other issues together!
‘Assembly line psychiatry’ as you call it has taken a terrible human toll on political activism in our nation as more and more people in despair have allowed themselves to become isolated and inward seeking. May I suggest that the spirit of activism did not simply disappear but rather, it is in hibernation while millions grapple with their own spirituality and the deeper connections that bind us together. Perhaps the next political revolution will be even deeper and more effective when millions come out of their drug induced stupor and self loathing long enough to realize the extent of the massive shift of wealth from the middle class that has just taken place under our noses?
While reality television viewership and other forms of escapist entertainment has gone up, investigative journalism and civic engagement has gone down. Let us hope that the next great revolution will be a peaceful one, characterized by a spirit of curiosity and scholarship generosity and inclusiveness, where neurodiversity, is valued and people who identify with being homeless, marginalized or disabled are honored for who they are and what they know, not for what they can contribute to our depraved economic growth.
Not only will the next revolution not be televised, the revolution will also not be medicalized. Amen.
OK. Darth Vadar may have over the top; out of curiosity and penitence, I googled the items you suggested and here is my two cents worth: the studies you cited don’t qualify Dr. Cardiff to be a barracuda of consumer protection in this era of rampant greed and corruption.
1) NIMH study…..I have to take it on faith that the TADS study had industry support as you inferred because the funders are not listed on the version I saw. I also have to take it on faith that Mr. Cardiff had anything to do with it because the author/director was not listed either. Most importantly, there was plenty to like about this study from industry’s perspective. Talk about dodging a bullet! If I were a Prozac salesperson, I could spin this study so quick it would make your head spin.
The TADS study appears to provide evidence for what anyone with a modicum of lived experience knows as it relates to clinical practice (how psychiatric drugs are routinely prescribed and how patient outcomes are monitored). As one would have predicted, combination therapy—pharmacology in conjunction with CBT—is the safest short term treatment option over pharmacology monotherapy presumably because talk therapists have something useful to provide clients that prescribers don’t, i.e. they are trained to establish trust, they are less likely to use force and coercion, they are trained to observe and report behavioral changes, and they are less likely to be know-it-alls as to the origins of their client’s behavior (especially distress) a state which lends itself to open discourse and patient disclosure, things that are vital for safety.
This is hardly the kind of study that elevates an academic researcher into being a champion of consumer safety capable of protecting people from psychiatric harm. Rather this study qualifies him to be the champion of more funding for complimentary industries that can ameliorate psychiatric harm after the fact.
From this study, one could spin a fairly tepid policy recommendation that psychologists be involved in treatment teams to do the gumshoe work that psychiatrists usually will not or cannot do. One could also use this study to recommend to politicians that we should increase taxes to pay for CBT for all children and adolescents who are prescribed SSRI’s so that the protective factor of having a psychologist or counselor involved won’t be limited to all but the most privileged families. But you and I both know that currently, the mental health pie is divided with the lion’s share going to big Pharma; and the only thing that will change that is when expected corporate losses (liability) are in excess of anticipated corporate earnings resulting in a massive pull outs. Corporations pulling support for research and development of new psychiatric drugs who are aware of the long term negative impacts of psychiatric drug addiction will sell their sinking ships to other corporations, possibly resulting in some changes in the field. By then, however, it will be like mining companies who leave Super fund sites in their wake. By the time, the profits have been safely migrated out of the industry, the cost of psychiatric harm the extent of the corruption of the FDA will be evident but there will be no one to be held liable.
Additionally, since the study was limited to 36 months, it does nothing to reveal the long term harm of stigmatizing of adolescents whose depression may have nothing to do with a chemical brain imbalance and have everything to do with bullying at school, dysfunction at home, unhealthy body image from advertising, etc. By the time the adolescent enters adulthood, the situational factors that may have been primary factors in the development of ‘major depression’ may have been so discounted or ignored in light of seeking remedies for the ‘chemical imbalance’ theory, that they may be forgotten entirely. After all is much easier for families to embrace the chemical imbalance theory of the diagnosed family member since it requires no work on the part of families to understand why little Johnny didn’t get the emotional support he needed to thrive. By the time five to ten years roll by, little Johnny may be on polypharmacy, always searching for just the right tweak to his cocktail as opposed to seeking alternative ways of coping with distress. The latter part of Johnny’s life will be chasing a phantom chemical brain imbalance or dealing with protracted withdrawal from multiple psychiatric drugs.
The fittest candidate is someone who is not only willing to mitigate harm, but prevent it in the first place and holding corporations liable for future harm. By prevention I mean someone who favors policies to make it illegal to patent and market harmful drugs to treat vulnerable individuals, especially children, who are sad or depressed when safer evidence based alternatives exist. Even the TADS study shows that the CBT monotherapy ‘catches up’ with pharmacology monotherapy and combo therapy. It doesn’t take a degree in rocket science to figure out which approach is safer in the long run but it takes a barracuda to win the information war that is necessary to put safety first.
Too bad, the adolescents who received only CBT were not followed for twenty years. I’d put my money on them having better long term outcomes, which is what really counts, especially now that the baby boomers—arguably the first generation of individuals psychiatrized for life starting in adolescence—are rapidly aging and we can see, first-hand, within our own circle of family and friends, which of us end up being the first to die—those who have been psychiatrized and medicated for life and those of us who, due to the grace of God, dodged this bullet.
2) Per the study Duke did on St. John’s Wort (taking it on faith again that Dr. Cardiff was the lead author/director) I am not too impressed. Launching grenades against herbal supplements is a safe target for academia as it provides relatively low yielding fruit while pissing off very few financial investors. There is no reason that dietary supplements shouldn’t be held to the same vigorous testing standards as pharmacology, but I suspect that they are being held to an even higher standard, if measured by the amount of corporate media attention given to this study v.s. the amount given to the numerous studies in which SSRI’s that performed equally as bad as hypericum perforatum against placebo.
Perhaps the focus of the study should have been which does the least amount of harm? When my adult son met most of the criteria for major depression after being discharged from the hospital for a suicide attempt, he did take St. John’s Wort and was greatly assisted by doing so. What my son did differently, (which Duke study participants probably did not) was he harvested his own St. John’s Wort in the field and produced his own hypericum perforatum tincture in our kitchen.
The supplement didn’t have a huge effect either way but it did give him a sense of purpose, a stake in his own recovery, some sweat equity, an opportunity to be outdoors, and greater attention to his diet in general. Better than lying in bed all day waiting for a magic pill to take effect.
Do you see the difference? The point of using herbal supplements is that individuals who are willing to pay out of pocket (they can be quite substantial in cost) or formulate their own, are more likely to make lifestyle shifts and accept greater responsibility for things within their control, such as diet. Good luck getting people to put sweat equity into their recovery once a psychiatrist fraudulently claims that they have a chemical brain imbalance that will be ‘fixed’ once they find the right cocktail of drugs. Why bother to make any effort to change if one is the passive victim of a disease, and why bother to complain about side effects if a psychiatrist thinks it’s all in your head or the only solution to obtain additional prescriptions and the original symptoms such as lethargy or agitation or irritability become indistinguishable from the side effects including compounded lethargy, agitation or irritability? Once an adolescent is in the snare of psychiatry, they are at risk of being consumers for life.
3) Per Dr. Cardiff’s role in a major study involving noetic therapies (a term which I wasn’t familiar with until today) I couldn’t read about it because the study was behind a pay wall. And I don’t have time to read up on the benefits of public input. If the literature put out by pseudo organizations such as NAMI is any measure of the intelligence of the ‘general public’ then there is very little to be gained from public input, as the public has already been the victim of a massive fraud, subjected to decades of direct to consumer advertising and marketing campaigns instilling the chemical imbalance theory of mental illness deep into our psyche and duping us into believing in the safety of psychiatric drugs. Until the public has been educated to the contrary, there is very little to gain from public input.
I tend to agree with you. Yes, I acknowledge that I have heard psychiatrists make ludicrous statements with straight faces about how the medications made the patients feel so well, that they decided that they didn’t need to take them any longer..statements that are so out of touch with reality that I wanted to scream..but what I meant was that I have never personally witnessed a psychiatrist who was sadistic or got pleasure from a patient’s suffering. Anecdotally, I’ve heard of such people.
More often than not, I witnessed a different kind of harm being delivered by psychiatrists—harm due to ignorance; not only ignorance of their patient’s authentic needs and preferences because of their sloppy work, lack of homework, and failure to establish mutual trust and respect and instill hope in their clients, but also, due to ignorance of the origins of their own prescribing patterns and ignorance of their own ineffectiveness (which in itself is a form of trauma insofar as you have devoted yourself to training rigorously for a profession which statistically speaking, is shown to produce much greater harm than good)
When I said “retaliating unconsciously” what I meant was the harm that they could deliver by being unaware of their tendency to prescribe higher dosages, deny privileges, or be obtuse to their patient’s side effects if a patient failed to reinforce their psychiatrist’s ego. My daughter who rarely felt compelled to massage her psychiatrist’s ego (by reminding him of his superior knowledge or merit) ended up being singled out for especially harsh treatment. Maybe we are looking at the same behavior with a different lens or just calling it something different. I don’t know
Thank you for this challenge. Some of having been waiting and hoping that our loved could find a member of the psychiatric guild who could help our daughter navigate her way out of the spell (prison of the mind) that psychiatry helped place her in with its doom and gloom ‘disease’ model.
If my daughter had no ‘chemical brain imbalance’ before her diagnosis and involuntary treatment for psychosis, she certainly has one now after six years of dopamine minding drugs.
Mr. Pies does seem to give a nod that environment does indeed play a major role in mental health when he writes that the “genesis of major depression” (is) “exacerbated by psychosocial stressors and losses, and worsened by dysfunctional personality traits and poor social supports”. Perhaps he would also admit that there is a mountain of data that the other two ‘grand daddies’ of mental health disorders: bi-polar and schizophrenia are strongly associated with trauma. If so, let him be the first to admit how psychiatry today as it is practiced, re traumatizes people and squanders valuable opportunities to form theraputic alliances by instilling hope, mutual trust, and respect.
It should not be too much of a stretch for him to grasp that for many, ER’s are used as the option of last resorts by family members and police officers who don’t know what to do with people experiencing extreme states. As such they have become dumping grounds and entryways into forced drugging which the United Nations has condemned as torture. Instead of receiving comfort at these places, individuals in distress are stripped of their clothing and personal items, secluded in isolation cells for up to 24 hours, restrained in five point restraints, joked about by medical staff well within their hearing, and forcibly injected with Haldol for exhibiting the slightest inclination to run away.
The psychological harm of being treated in this manner, is nothing compared to the stigma of being told that you have a lifelong disease that must be medicated for life, as with diabetes, and if you disagree or express a wish to seek alternative modalities of care and treatment, you are laughed at, told that you have no ‘insight’ and subject to ludicrous court commitment process. My daughter has experienced all of these things.
Very few psychiatrists have the courage and integrity to put their client’s unique psychological and emotional needs ahead of their own personal agenda (i.e. continue to materially profit from the mental health system, maintain the respect of their peers, publish their papers in major journals, etc.)
Taking a public stand against psychiatry is not as easy when one has a loved one in the system and retaliation is a very real possibility. Many psychiatrists are not even aware that they are retaliating unconsciously when a patient or their loved one exhibits resistance to labels and standard treatment. From my perspective, clinicians seem to be some of the most out of touch people I have ever met.
And did I forget nausea? Inner ear disorders are horrible horrible horrible and medical science has no cure for most of them.
You are a lioness and have always been one of my heroes after I heard your spoken word poetry in 2011.
Nothing will change that.
Thank you for sharing your experiences both good and bad. My heart goes out to you, especially as it regards your vestibular condition. Based on my husband’s experience after smashing his eardrum over two decades ago, there are no words to describe the suffering people with inner ear conditions often routinely experience.
My husband experiences tinnitus that ranges from a faint hum on a good day to the roar of a freight train on a bad day. From I can gather, most voice hearers enjoy breaks from hearing voices but people with tinnitus often never get a single break from the constant sounds produced by their brains/inner ears. My son has a milder case of it and he uses a fan at night to create ‘white noise.’
People with inner ear disorders often routinely experience debilitating bouts of vertigo to the point where they do involuntary face plants, not as sudden as seizures but they are completely unable to keep themselves from finding the lowest place possible where they cling to the earth.
They often go down including in public places like airports and train stations unable to get up for hours, even with assistance. The vertigo affects more than orientation to place and time; it has psychological impacts too, causing a sense of doom, terror, and extreme hopelessness. There are simply no words to describe how horrible it can be. My heart goes out to you Corinna. Sending all my love and prayers your way.
Yes, this is like hiring an oil executive for Secretary of the Interior. Sad, but not surprising. I don’t believe the tide is turning against psychiatry. I think things will get much, much worse before they become better. Many credible people who work within the system have rung the alarm bell and nobody cares. I’ve spent a lot of time visiting my loved one in the state hospital and various foster homes; I’ve witnessed hundreds of shut away people who are permanently disabled by their ‘treatment’. The response of family members is to clamor for more psychiatric beds and better chemical restraints. These parents won’t rest until big Pharma invents a depot shot of Haldol that has a half life of fifty years. We are fighting an Evil Empire of corruption and greed and this new guy at the FDA is just the new Darth Vadar.
Thanks for sharing. I am truly grateful to you for writing about your experience on MIA. I found it liberating to be able to accept that I don’t understand my daughter’s experience of ‘catatonia’
Your words elicited profound memories of being with her when she was enveloped in silence and stillness, simply being. When she lost the ability to speak, eat, drink, go to the bathroom, close her eyelids, etc. our first reaction was panic. We took her to the ER where she was quickly admitted and hooked her up to all kinds of life support gadgets. We were told by a psychiatrist that in former times, catatonic people simply died. We believed them.
The medical doctors tried to convince us that the high level of medically appropriate treatment that my daughter was receiving was proof that we live in a more compassionate era. Friends dropped by with flowers and her psychiatrist even played the guitar for my daughter. I thought things were looking up. One day, the doctor walked into her room and indicated that the most appropriate treatment for our daughter was shocking her with electricity and that it was “less toxic” than medication. But shocking our precious daughter seemed so barbaric, that the only shock that was delivered that day was the shock of two parents waking up out of a spell from years of being conditioning to trust medical authorities on any medical matters beyond our understanding.
They don’t have a clue, my mind started to shout! With this realization, I lost all desire to uphold the facade of knowing what my daughter is experiencing or the desire to instantly trust those who purport to know what she is experiencing just because they have a medical degree and I don’t.
The facade of ‘compassion’ quickly wore off and they moved her back into the locked psych unit and started business as usual which was force feeding her a cocktail of benzo’s, mood stabilizer, and neuroleptics without a clue as to the role that her previous cocktail of mind altering drugs (and acutre withdrawal from them) may have played into her catatonia in the first place. I am convinced that the doctors are often madder than their patients but they just don’t know it or admit it.
My daughter taught that to suspend judgement and enjoy silence and darkness is OK. Silence can be very healing. My daughter once communicated with me using clicks over the phone and I was touched and grateful for every click. I think another MIA author has written about selective mutism and I am dying to look it up.
The thing that I enjoyed the most about your article was going so deeply into the issue of stigma. Great work. I think the authors on MIA are bringing an important light to our mad world. Thank you for simply being.
Thank you GetitRight for asking these questions. As a parent of a young adult who experiences extreme states called ‘psychosis’ I don’t identify with being a perpetrator of ‘sadism’ nor do I identify any member of our household with being ‘sadistic’ Although I find the author’s views consistent with my own views about the origins of ‘psychosis’ (trauma), there are a number of traumatic events that can happen in early childhood that have nothing to do with sexual or physical abuse. In Joanna Greenberg’s book “I Never Promised You a Rose Garden” I remember that her therapist determined the source of Joanna’s trauma was being temporarily left in the care of a nanny for several months (and for much of that time confined to a crib) as a result of a medical crisis involving another family member.
If I had some advice to give to therapists who do not yet know their patients well, refrain from judging the family until you can get a clear, balanced picture of that person’s childhood experiences. Second, screen your patient for recent psychiatric harm and abuse; ask your patient, have you ever been jumped by multiple people and forcibly injected with a needle containing Haldol or Thorazine? Have you ever been restrained with five point restraints? Have you ever been forcibly made to live in an institution because you were considered to be a danger to yourself or others or did you ever try to run away from a psychiatric institution or foster home, only to be returned, in handcuffs by a police officer? Have you ever served time in jail or prison for a non violent crime? Have you ever been secluded, stripped naked, or forced to sit for 24 hours in a small cell without windows with no access to a bathroom? Have you ever had to endure horrific side effects, including incontinence, due to being forced to take mind numbing medications? Have you ever been warehoused for months, even years with people in deep states of emotional distress, all of whom were being drugged to the point of being disabled? Can anyone who purports to treat patients in ‘psychosis’ really be that obtuse as to the profound and lasting effects that such ‘treatment’ has on people who are already experiencing grief, loss, and trauma?
Well said, Alex. Since Alex raises the point of medical toxicity, one obvious avenue of research (an avenue that is not likely to get any funding from big Pharma) is how, exactly is gut or intestinal health negatively impacted by psychiatric drugging? Even if pro biotics do not end up delivering a miracle cure for a host of emotional and mental symptoms, at least they may prove to be useful agents in the restoration of one’s personal ‘baseline’ after one’s health has been severely eroded or worsened by psychiatric drugging. Does that make any sense? I’m not sure how to word that thought but many of us would simply like our loved one to get back to their ‘baseline’ after their mental emotional state was made much worse by psychiatric drugging. If pro-biotics have a role to play in that process, bring em on! At least they are sure to do know harm and they can taste delicious!!!
I want to caution folks from drawing a positive conclusion from this poll; according to the summary, the low rating was based on the high cost of pharmaceutical drugs. Big Pharma could easily roll out a big drug give away program and distribute ‘free’ or low-cost drugs to people at soup kitchens, homeless shelters, free clinics, etc. while publicizing such actions in the context of a massive compassionate social justice campaign. That is what I would do if I were a board member of a major Pharma company reading this data. Folks, this low rating has nothing to do with the harm done to millions by psychiatric drugging; the majority of Americans are still clueless as to the extent of the corruption and cover-up of data. Still, any unfavorable publicity could be useful.
I have a response but it is off topic so let’s talk in private!
Thanks for the heads up. I would like to send your paper to the social worker who is currently assigned to my daughter. Ran into a problem though….I tried to download your paper and I received the following message:
“NOTE: The full-text of this Publication is currently under embargo. It will be available for download on Sunday, January 24, 2016. I tried to download it from the following site:
http://scholarworks.gsu.edu/ssw_facpub/. Did I go to the wrong site?
I meant to say, the greater the risk that they will NOT enjoy a full recovery
I agree with Sa. Often, people like you who point out the absurdity of the explosion of polypharmacy and off labeling prescribing of ‘anti-psychotics’ involving children on the basis that their brains are still developing fail to point out the absurdity of using ‘anti-psychotics’ to treat psychosis or mania, bi-polar etc. You are one of the first advocates to question the use of neuroleptics for all people, not just children. It makes me uncomfortable when people only advocate for less off label prescriptions.
Everyone’s brain is still developing! Neuroplasticity is possible for all age groups. I’ve personally seen my 25 year old daughter decline cognitively and become horribly ‘locked in’ (i.e. addicted) to these neuroleptics while ridiculous new drugs were added to her cocktail to counter the horrific side effects. I think we should either use the term neuroleptic when referring to this class of drugs or use quotation marks around the term ‘anti-psychotics’ to remind readers that this term is a marketing term and has no basis in scientific fact. This class of drugs in no way, ‘cures’ psychosis; in fact they often make psychosis worse, as with my daughter. They cause dissociation and diminish a person’s executive functioning, the part of the brain which one so desperately needs to make judgements about what is real and what is not and what kind of behavior is warranted. Is is possible for people to pass legislation that would put this class of drugs in a new legal category so they are harder to prescribe, not just for children but for all people? The longer people are on high doses of neuroleptics, the greater the risk that they will enjoy a full recovery, or is that the hidden agenda of psychiatry, to keep an entire population of customers dependent on psychiatric care?
Thanks for the heads up about the new study being published on Sept 14. That is coming up very fast. I hope the authors will not face a backlash.
You write: “The new team of authors, including those most active in lobbying for retraction, has taken the same data and reached startlingly different conclusions than the original. Their conclusions should lead us to reassess our assumptions about drug safety regulation”
Are you referring to our assumptions about drug safety regulation as it relates to this class of drugs only (SSRI’s)? Many of us have loved ones who have been harmed or continue to be harmed by other classes of drugs. If this has implications for the testing and regulation of all psychiatric drugs I would be very happy but not as happy as it it affected more than our assumptions but led to actual changes in the way we regulate drugs.
Assuming optimistically, that this changing of ‘assumptions’ started to warm people up to the idea of reforming the way we regulate drugs, I imagine that every country already has its own drug safety regulations/standards in place. Where does one begin to get them to do their jobs better or differently? What is the U.K’s version of the FDA and will this revised study impact the UK only?
Is there an international agency in existence that is responsible for drug safety of all psychiatric drugs sold worldwide? If so, will that agency be affected by a high profile case such as this? Some of us who have family members who have been harmed by psychiatric drugs are very keen that the US not export failed drugs to developing nations.
Using big Agriculture as a parallel, the US banned DDT after Rachel Carson’s pioneering study on the affects of pesticides on local bird populations but developing countries like Mexico continued to use DDT, including on produce that was being imported back into the US. My guess is that existing trade agreements make it impossible for Mexico to refuse to purchase banned pesticides from the US and with the Trans Pacific Free Trade Agreement spearheaded by the Obama administration, it may be even harder for developing countries to enforce regulations or ban harmful consumer products including psychiatric medications. In fact, I was surprised to find, on a website dedicated to stopping the fast track legislation at: https://www.stopfasttrack.com/#video, there is not a single organization representing drug safety or ‘green medicine’ . In other words labor, the environment, and sustainable farming interests are all represented but not consumer/drug safety! Why aren’t consumers represented at this important global discussion?
Also, I had no idea that former New York State Attorney General Elliot Spitzer filed a lawsuit against GlaxoSmithKline in 2004. I knew he took on the mob, AIG and other ‘too big to fail’ corporations that were engaging in securities fraud. Too bad about the prostitution scandal that ruined his public career.
Of course you should use the term as long as you do not borrow my incorrect spelling. My son coined the term ‘gilding a turd’ to describe house flippers who purchase structurally deficient houses, slap a little exterior siding or a coat of paint but ignore the dry rot or the cracked foundation.
Frank, I respectfully disagree. A goal to end psychiatry would be akin to civil rights workers in the sixties making it their primary focus to outlaw the KKK. Instead they focused on key issues such as voting rights and segregation.
I think the primary focus should be informed consent and the abolition of harmful treatments and ending involuntary commitment. Abolishing a single profession because it is the agent of harm leaves a window for other professions to fill the vacuum created by the elimination of that profession.
Great post. Your personal story is extremely relevant to the issue of prisons v.s mental health ‘treatment’ and a reminder that people in psychiatric hospitals are routinely denied their humanity. So- called advocates for the ‘mentally ill’ are falling into this trap of cozying up to Torrey over this prison issue and I suspect it’ s because they work for organizations that are getting system funding (government funding) or pseudo consumer organizations like NAMI that get big Pharma dollars so they have to look like they are doing some valuable reform or advoçacy work w/o going out on a limb or doing anything that would disturb their employer.
Beçause of employment stigma however every peer advocate receiving system $$$$ gets a free pass and I truly am not in a position to judge. I wouldn’t want to rock the boat much either if i were in the shoes of a peer advocate.
It would be much more valuable if consumer advocates would stop worrying about their funding for peer services or their Alternatives conference long enough to see that they are not building an authentic grassroots coalition of peers but rather they are giving cover to policy makers, law enforcement officials, and ‘treatment’ providers who would further erode the rights of individuals to make their own treatment decicions even though there is ample evidence that personal agency, not chemiçal restraints, are a stronger predictor of full recovery. But this value cannot be fully realized for individuals receiving system funding.
I hope you reclaim all that was taken from you acidpop and that you experience all the joy that your restored humanity can rightfully afford you. Keep writing and speaking out! I always enjoy your insights.
Earlier an MIA author, Susan Rogers addressed the issue of transinstitutionalization called: “Destination, Dignity: Focus on a Broken Criminal Justice System” which made me very uncomfortable because it was about a protest march called Destination Dignity that made me feel very uncomfortable because the protest was organized and endorsed by questionable ‘peer’ organizations who made no attempt in their promotion of this protest to distance themselves from Torrey and his mangling of crime/penal statistics to justify the Murphy Bill. The organizers of this protest, at least not on their site promoting the protest made no connections to the work of Michelle Alexander and other reformists who understand that the failed drug war is one of the drivers of crime/incarceration and that people of color and low income people who are victims of abuse/neglect/poverty are overdiagnosed with psychiatric disorders while they are in prison institutions. Furthermore, the organizers of this event fail to point out that the experience of prison itself, as with the psychiatric system, can drive people mad. Taking people from prison and putting them in ‘nice’ psychiatric facilities or forcing them to live in supported housing programs where they will be forcibly medicated by ‘nice’ peer workers is like trying to guild a turd. NAMI and other ‘pseudo peer organizations want to take the turd and make it smell a little better but its still a turd.
Certainly these allies argue, psychiatric neglect is a driver of the incarceration of the ‘mentally ill’ but they are mute on the possibility that psychiatric harm could be one of the driving forces of the incarceration of the ‘mentally ill’ in the first place. Many of the incarcerated ‘mentally ill’ are refugees of the psychiatric system. How many ‘mentally ill’ individuals who commit crimes and are convicted/incarcerated were made chronically ill from the traumatic ‘treatment’ that they received in the psychiatric system before they entered the penal system? How many were addicted to harmful neuroleptics, mood stabilizers, but received no supportive services while withdrawing, justifiably, from toxic psychiatric meds?
Thankfully, Mr. Carney for raising these issues and giving factually based response for those of us who think Susan Rogers and other peer leaders are missing the boat on the prison issue.
I totally agree with you. The problems encountered by advocating for oneself or a loved one in the MH system are a metaphor for the problems one encounters when advocating publicly for a revolution in the MH system. Clinicians do indeed get triggered and we need therapy for the therapists who are unaware of the harm they mete out by double binding their clients. Thank you, as always for seeing the danger of advocating from within. It is a lot different than advocating from say, an ivory tower?
Those who have the most to gain from a revolution in the MH system, have the most to lose. Reprisal is real. The patient who wanders up and down a hospital hallway shouting about he/she is going ‘to sue this hospital for violating my rights’ are the first to get medicated, by force, if necessary. They tend to get the highest doses of the most harmful medications. They get sniggered at by psychiatrists, interns, psychiatric nurses. Their Haldol and Thorazine injections are administered with downright hate. Anyone who is triggered has a shadow and when staff members are all simultaneously triggered, they circle the wagons and reinforce the harm by failing to own their own sadism. They reinforce their the goodness and kindness of their profession, and massage one another’s ‘rightness’ just like Christians who go to church and reinforce how good and kind they are, even as they listen to a pulpit sermon against gays and lesbians.
I agree with you that ‘being right’ (another word for ‘power’ ) may be the bigger issue than the issue of funding but I’ll have to reflect on the ramifications of this. There are a lot of implications for adopting this view. Some people on this site have identified capitalism and greed as the single biggest enemy of creating a revolution in the MH system. What you are suggesting is that taking the motive of profit out of the equation will not necessarily end psychiatric harm.
I’ll think about that for a while. Have a great day. I’m canning tomatoes and I can smell that they are ready.
You ask: “what do you think our priorities should be right now? Strategically speaking, what should each of us be doing? And what should we be taking on together?
Here is my two cents worth:
1)nOrganize to build the urgently underground railroad, off ramps for people to safely withdraw from neuroleptic drugs without being rehospitalized and drugged at ever higher levels. Donate to projects like Inner Fire or the Soteria movement in your community. Build network of private resources (non system funded) nso low income people undergoing neuroleptic withdrawal can safely stay in houses or hotels with companions and guardians while accessing alternative medical care until the worst is over.
2) Challenge NAMI in public. Gain media attention and throw down the gauntlet with NAMI. The APA won’t dialog with us but NAMI may need to be more responsive to an open challenge from consumers/family members because they purport to represent us.
3) Direct Action: I agree with Stephen Gilbert that we should considering picketing the NAMI marches or at least in some way, publicly challenge NAMI’s message and legitimacy with the intention reducing their membership, donor base, and clout in the legislature.
4) That having been said, we need a replacement for NAMI. We need their membership. Not sure how to migrate members to other authentic consumer organizations if alternatives don’t exist yet. Support the alternatives in your community. Don’t just bitch on this site. Donate money. If you don’t have money, donate volunteer hours. Go to your local MindFreedom affiliate and help them make phone calls, build their database, distribute flyers, organize gatherings. MFI needs your support. Renew your membership. Tell your friends to renew their memberships.
5) Find a place for family members. The gay movement has their PFLAG. We need a place for family members to get support. The movement needs the resources of family members. The movement needs to be led by people with lived experience but people with lived experience need to delegate roles to family members in the movement.
6) Publicly challenge NAMI in specially selected cities where we have good inroads with the media (cities in which organizers have solid contacts or a track record of success involving the media) NAMI gets a lot of media attention for it’s hypocritical ‘stigma busting’ campaign and we need to take back the anti stigma campaign which rightfully belongs, first and foremost to those who have been most harmed by psychiatry and haven’t been brainwashed by the medical propoganda adopted by NAMI. We could picket NAMI’s conferences or their walk a thons as suggested by Stephen Gilbert.
7) Develop a national teaching platform to end NAMI’s monopoly on education of family members. There are glimmers of hope in the development of educational materials. eCPR and ‘Families Healing Together’ by the FEMHC are examples of educational. We need to support the dissemination of these materials by making donations of time and/or money to organizations which are developing and promotion alternative teaching materials and promoting those resources through our personal networks (social media included)
8) Build a coalition with a single purpose, mission and share language. We should carefully select one simple message and train our organizers to stay on this message. The message: ‘End Psychiatry’ is not simple enough because it begs a lengthy explanation. Try telling someone on the street that the data does not support conventional psychiatric treatment. That takes too much time and that is not the message we need to print on our flags when the media is giving us our five minutes (or five seconds) We can see even on the posts in this discussion how the message ‘end psychiatry’ lends itself to a counter argument because it ends up sounding as if we are saying: “End services to those in mental distress.”
9) Even if people are abolitionists, this does not make for a good message unless it is the subject of a long, unbiased article or book.
I’m so sorry your are having to deal with migraine headaches as well as PTSD. That is a very heavy load to carry. It’s unfortunate that you were assigned to a terrible psychiatrist who seemed to embody every bad stereotype of the field. Even though I believe everything the author of this article says about the futility of psychiatry trying to improve its image without making any general admission of the harm they routinely mete out, let alone do anything about that harm (my daughter has been involuntarily committed and forcibly medicated so our family is very familiar with the dark side of psychiatry) I do believe that there are compassionate psychiatrists out there who are willing to give more than fifteen minute med checks. I’ll let you know when we’ve found one.
I know from my husband’s experience that migraines are very hard to treat. My husband has been self medicating his migraines for several months. His treatment of choice: Tylenol and medical marijuana but these are only providing limited success. He also deals with tinnitus and attacks of vertigo on a regular basis from Meniere’s Disease. Today, he is having a bad day. The only way I can help is to offer to take some things off his plate and rub his neck. There is not too much you can do for someone who hears a roaring like a freight train inside his head. Unfortunately, medical science hasn’t found a cure for migraine headaches or Meniere’s disease. I can only imagine how many lives are ruined by these conditions.
I recommend that you seek to establish a relationship with a naturopath, not a psychiatrist. Naturopaths will generally do an intake interview that lasts for about two hours, something a GP or primary care physician is generally unable or unwilling to do. Naturpaths are trained to lead you through a comprehensive diet elimination program to identify possible dietary triggers, presribe dietary supplements if warranted perform complete blood panels and give you guidance and resources to perform audits of your living/work environments. They can also give you referrals for other healing modalities such as accupuncture, bio-feedback, and meditation.
I’ve been trying to get my husband to take this step for sometime. He seems steeped in the allopathic medical model perhaps because the magic bullet approach let’s him off the hook in terms of not having to make any major lifestyle changes. Also he generally won’t seek alternative treatments if they aren’t covered by our medical insurance. Probably a lot of people do not seek alternative healing modalities for the same reason. I think one of the primary barriers keeping ordinary people like us from seeking out alternatives that ‘first do no harm’ is financial.
It takes an enormous amount of diligence and faith to find an effective treatment without turning to pharma drugs that cause reliance and may come with a host of secondary problems. An effective treatment has to take into account your individual history and lifestyle and many treatment providers are not willing to get to know you. I would urge you to visit the blogs of people who have been very open about their experiences of self healing. For example, Monica CAssini’s blog at http://beyondmeds.com/ may be very helpful. Although Monica’s experience of protracted withdrawal from psychiatric medications may be very different than your own experience, there are a lot of references on her site to migraines and brain zaps, two of the most common withdrawal symptoms experienced by people who are coming off psychiatric medications.
Her insight may be helpful and inspirational because she goes to the root of healing which is to take responsibility for one’s healing as opposed to outsourcing one’s healing to a professional. Writing about your experiences as you have today or keeping a journal may be helpful and finding peer support services may also be helpful. Good luck!
Thanks for drawing the distinction between the US and the UK. I also appreciate your shout out to Dr. Lieberman and Harvard, even though I suspect Dr. Lieberman will never take up your gauntlet in a public forum involving interdisciplinary topics that required knowledge of other disciplines such as philosophy, economics, anthropology, history, religion, or psychology. I suppose such vacuus individuals are only good for tips on where to launder money…oops I mean where to park your mutual funds
I’m glad the next ISPS international conference is in Liverpool and nation that gave birth to HVN. Unless your immigration authorities want to deal with a large influx of American immigrants fleeing the US’s mental health system, you better say something hopeful about the US?
I think it is revealing per the quality and substance of your blog that it is resulting in a great number of lengthy responses. One poster told me dhe wroye an article about mutism! Wow! Your article is rich and layered providing many points of entry for a wide range of individuals whose experience of the mental health system is different but similar in the sense that the common denominator that ties us together is that we all know how it feels to have our voices silenced or ignored; we all understand how it feels to be lied to or betrayed.
I apologize for going on and on with my own story. Bad etiquette. Your passion and articulation was so inspiring it brought up a lot for me and I temporarily lost my manners and my brakes. I asked The moderator to remove my long post but I see that is not the standard solution for such faux pas.
encephalopathycauses-smi Thanks for voicing what I always felt about that man. He made me feel creepy but I didn’t know he said such horrible and stupid things in public. Yes, I want to know too, how can we get him fired? Imagine having a person with no lived experience lament about someone’s refusal to take medication as if it weren’t so obvious why.
Dr. Hoffman. Astro turfing is commonplace. Follow the money when you see little organizations sprouting up which target special populations. These organizations allow family members to outlet their grief and guilt, which is no crime, I would want to do the same if my child committed suicide but big pharma is often the driving force behind these pseudo organizations, therefore the wrong message is often being conveyed such as Greater access to psychiatry will reduce suicide which of course, is not supported by the data. In fact the opposite may be true. Follow the money. There is an abundance of seed money available from big Pharma to start up and operate small non-profits. I think our movement needs to create a certification process as small, organic farms did decades ago to distinguish organice produce from big FARM produce at the retails outlets. We need to start nationally certifying consumer organizations and one of the first tests is NO FUNDING FROM BIG PHARMA, period. I see the same astro turfing happening with women with post partum depression. This is a vulnerable group of women but an organization in my community formed to help women in this category brings in awful speakers who are funded by manufacturers of SSRI’s which are not only potentially harmful in utero and during lactation but can lead to rise in suicide. Is there no end to the corruption? God help us out of this mess!
Of course I am not implying that my daughter did not have mental health issues to begin with. She was bullied at her school and everyone in our family was and is experiencing trauma. By being the diagnosed one she was became the family ‘barometer’ at best and the family ‘scapegoat’ at worst. But in no way do I believe that she has a permanent ‘chemical imbalance’ that can all be sorted out by neuroleptics for life, as they are currently prescribed. Neuroleptics are causing people to develop tardive psychosis.
How is the public protected when people like my daughter are chemically restrained for life and chemically lobotomized? Are you referring to the protection of property by those ‘crazies’ who commit misdemeanors such as littering or trespassing on your lawn? Are you talking about school shootings? My daughter is no axe murderer. Instead of thinking about protecting a small segment of society who will be affected by the rare instances when a ‘crazy’ person is violent or commits a crime, you should be thinking of the huge transfer of wealth from the struggling middle class, those who still pay taxes to fund this sinking ship called the mental health system. You and me, the taxpayer will be on the hook for the millions of dollars it takes to keep people chronically ill and dependent on our welfare system as cruddy and niggardly as that system is.
My daughter never received any alternative treatment choices during her first episode early psychosis–only meds and restraints–now she will need services for years, hopefully not for life, services that are more costly to deliver than early effective alternative interventions; services such as costly supported employment to teach her how to put widgets together or sweep floors, ACT, supported housing, diabetes management, kidney transplants, dentures for the grinding tooth caused by tardive dyskenesia, polypharmacy to the tune of $2000/month, hospitalization after frequent relapses etc. Not to mention that people like her often never become productive tax payers. If you want to protect the public then find alternatives that FIRST DO NO HARM that help people to return to full productivity and inclusion in the community quickly and do not cause learned helplessness. Believe me, you are not at any risk from my daughter but your bottom line is if you pay taxes.
Furthermore, when I took her to the ER they stripped her clothes and put her in a windowless isolation chamber. When she tried to run away they strapped her down and put her in five point restraints and injected her by force. When they loosened the binds finally, the first thing she did was punch the nurse who tied the restraints in the first place. This was the first violent act she ever committed unless I count the time she punched her brother when she was eight years old. Then the hospital staff charged her with assault! If you took restraints, harmful labeling, and forced drugging out of the equation many of the crimes committed by those ‘crazies’ would diminish substantially!
The little things are important when reaching out to family members. Smuggle in and leave MindFreedom materials such as ‘Truth Injection Brochures” (they are free for download on MFI’s website) at community hospitals when visiting friends or family members who are involuntarily held. NAMI literature is posted prominently at bulletin boards in the visiting areas at these facilities. If medical directors allow NAMI to post their materials, equal bulletin board space should be given to other consumer organizations.
Thanks! The ISPS workshops in our community (by Ron Unger) have been a God SEND! So was the ISPS conference in New York. I can’t wait for my daughter to find a mentor/teacher. I don’t even want to use the term therapist anymore in front of my daughter. When someone has been forcibly treated, a chance to develop a ‘theraputic alliance’ is kind of a long shot, don’t you think? Still, I hope such a relationship can develop and ‘stick’ and I think you are spot on!
Thanks for the kind words. I’m positive that it will take a village to get her out and keep her out. Want to be a part of our village? My name is Sarah Smith and my email is [email protected]. My husband and I are downsizing our lifestyle so we can focus on supporting her but we will need lots of friends to drop by, call, and support our entire family during the most acute period since getting out of a psychiatric facility is a tough for a family member even with lots of support. For one thing, siblings can get jealous of all the ‘attention’ of the diagnosed one. And believe it or not, so do the diagnosed children! Well intended extended family members and friends, co-workers and fellow parishioners can be very judgmental and take a dismissive attitude of our daughter’s plight, especially if they are employed in any medical profession. For this reason, families often have to start from scratch by dumping many old friends, renewing old neglected friendships, and be seeking new allies. This is normal but it takes time. Some families even have to acquire new employers and landlords who are more tolerant.
Even the closest of friends tire of hearing about a struggling family member or about the failing mental health system. Families who have no experience of a family member stuck in the mental health system lose patience just as grieving parents are allowed to grieve for a lost child only so long, then the implicit message is that they must ‘get on with their life’ This is one of the reasons for NAMI’s success. Parents are desperate for friends during a protracted recovery process (which NAMI would call a protacted illness). Unfortunately, NAMI has a monopoly on providing support for parents and cost for receiving this support is very high; if one takes their awful ‘Family to Family’ class it is atrocious in quality and filled with myths and misinformation. Some of us who tried to raise the issues outlined in Robert Whitaker’s ‘Anatomy of an Epidemic’ were shut up and silenced and we just lost interest in attending NAMI meetings altogether. I admire those parents who still go to NAMI meetings ostensibly to change it from within. I cannot tolerate the climate in NAMI. Better people than me can fix NAMI. I would rather start from scratch.
One thing is that if there is a Soteria in your community support it with all your means! It is exhausting to protect a young adult who goes gets their freedom and goes cold turkey off his/her neuroleptics. When someone through neuroleptic withdrawal syndrome and they can’t seek or obtain medical help without risking rehospitalization the family must go it alone. If an adult child goes for days without sleeping and starts to cause a disturbance, it becomes a full time job to pacify neighbors, friends, bosses, landlords, police officers, etc. The medical system adamantly refuses to recognize, let alone treat long term psychiatric harm, the first layer of the onion which must be peeled back before one can get to the original trauma. If you know of a family helping a family member go through a protacted withdrawal, please drop by with a casserole as one would if someone had cancer.
Thanks for giving me the idea of contacting the governor. If our petition for guardianship fails (even being an outspoken critic of the current mental health system is potential grounds for some parents to be forbidden to have any contact with their children) or even if it succeeds, this is a good idea to pursue. Our current governor Kate Brown is the former Secretary of State and as an out of the closet bi-sexual, she may be sympathetic to those who go against the grain of the status quo.
Are you a mother?
And Maninthe Moon my husband and I all seriously considering removing our daughter form our health insurance policy. As far as we can tell her being double insured only seems to encourage the hospitals to make her stay longer. She is a cash cow for the system. I don’t think throwing more money at this corrupt system will help greater numbers of people. Take the money and give it to consumers directly so they can choose their own treatment! In six years, the ‘system’ has spent nearly a MILLION dollars on my daughter’s care with nothing to show! For a small fraction of this shameful fortune she could have been provided housing, a Soteria experience, a college education, speech therapy, dance therapy, art therapy, a trip around the world, a lifetime gym membership, weekly visits to the spa for bodywork, etc. etc. Sir, you are grievously wrong that lack of money is the reason for the poor outcomes of our atrocious mental health system. And one more thing, my daughter is only 26 years old and she has had a lien put on all her future property and wages to pay the state of Oregon over $10o,000 for her involuntary treatment which she wanted no part in.
My daughter is in a different kind of revolving door in Oregon; from foster home to acute care facility to state hospital. There is only a hair’s difference between most psychiatric facilities and jails. In some ways I think being in jail is an advantage. When one is in jail one’s constitutional rights are enforced with greater frequency. One knows that has the right to be speedily charged and speedily receive an arraignment. When one is convicted and sentenced one has a TIME limit put on their incarceration, which is IN WRITING from the get go, unlike in a psychiatric facility when there is some ambiguous release date based on a subjective say-so of treatment providers and psychiatrists who have their favorites. I can tell you up front that people who are generally non compliant with their medications and wish to live a MEDICATION free lifestyle are generally given the worst diagnoses, and enjoy longest stays in psychiatric facilities. These facilities are becoming like brainwashing stations. Unless a patient admits that they have a mental illness and is willing to take the medications or receive their monthly depot injection, THEY WILL NOT GET RELEASED. Reminds me of the days of the inquisition when villages tortured witches and we did not release the ‘witches’ unless they confessed to consorting with the Devil. Maybe you identify with your diagnosis. That is your choice. If it gives you consolation that you have a chemical imbalance that disables you and makes it difficult for you to live in the world without support, good for you. That is your choice. But that choice is taken away for my daughter. She has no choice. She is forcibly institutionalized and forcibly treated/medicated. Her side effects are now indistinguishable and the psychological harm of being isolated/restrained/institutionalized are now indistinguishable from her original trauma that led me to seek care on her behalf. Psychiatry has nearly taken her life.
What Dr. Burstow is doing is giving families like ours hope that there will be a reduction in the harm done by psychiatry.
Your have a right to say and think what you like about these arguments being used to defund the mental health system and you have a right to believe that we need to throw more money at the system but as far as I’m concerned the mental health system throughout the U.S. Not just in Texas is rotten and hellish and corrupt.
Your appear to be happy with the services you are receiving so I’m happy that you are well served. But my daughter is not being well served. She is being forced to receive psychiatric services and forced to live in an intentional community not of her own choosing with kids her own age. She cannot choose to decline medication or they will hold her down and force her to be medicatedThe majority of workers at both psychiatric facilities and jail guards are low wage workers with little training in rehabilitation
Your voice is sure to bring legitimacy to the growing body of protest literature around the mental health system, providing a feminist perspective to boot! Well written and very inspirational! Thanks for inviting me to reflect on the treatment for ‘eating disorders’ a subject about which I know very little, using a new lens. Are people who are diagnosed with ‘eating disorders’ routinely subjected, like my daughter, to involuntary hospitalization? If so, I want to share a little of my daughter’s story from a mother’s perspective and why I think that agency of our children’s bodies are so important.
I once brought my beautiful 18 year old daughter to the ER for ‘treatment’ when she was experiencing extreme emotional distress, confusion, and an identity crisis. Big mistake. With every subsequent, involuntary treatment and court commitment (Oregon) after being subjected to every drug imaginable, it became clear how harmful the ‘treatment’ was and she became worse and worse. She has gone from state hospital, to ‘step-down’ facility (locked sixteen bed treatment facility) to foster home back to hospital again and again for six years.
More recently, for the past several months, she has been shouting loudly to herself on a frequent basis. This is new. Sometimes she finds it challenging to have a ‘coherent’ conversation, at least when one measures the conversation by ‘sanist’ standards. This is partly due to the extremely sedating dopamine binding drugs which diminish her cognition and make her confused and tired. Sometimes she has difficulty swallowing, and she experiences vertigo and black-outs. As each new debilitating side effect becomes manifest, she becomes angrier and more resistant. Thank God she is sturdy enough to be resistant. But like a fish in the net, resistance breeds more suppression and oppression. More anger equals more ‘medicine’ and more labels and new, ever worsening diagnosis and prognosis.
Since that first traumatic treatment at the ER and nearly every subsequent involuntary hospitalization since, my beautiful, proud daughter was routinely dehumanized by having all of her life problems discussed through the lens of an incurable ‘disease’, by having her freedom taken away, and by being told that she she lacked the insight to take charge of her own medical decisions. When she tried to run away or protest from her captors, she was routinely restrained, secluded, and forcibly injected by ‘caring’ people with ‘good intentions.’ Is is any wonder that she has some deep rage that needs to come out?
In the past, my daughter used any means at her disposal, including shutting down her own body and using ‘selective mutism’ to protest her psychiatric ‘treatment’. Finally, by some miracle, and partly with the help of voices like yours, I and other family members started to teach ourselves how to listen to and hear our daughter’s prophetic and authentic voice, at least in part, and here is what she has been saying all along: I am not a sub human, diseased individual who can only hope to spend the rest of my life on the sidelines, marginalized and isolated from society because of the stigma of my psychiatric diagnosis. I am a child of God; as such, I am not what I have been programmed to believe about myself; I am what I was designed to be, a loving individual worthy of being loved unconditionally for who I am. I do not know always know how to protect myself or how make my way in the world but I am worthy of your support to realize my dreams and manifest my gifts. I am worthy of joy, friendship, full citizenship, procreation, safety, sexual expression, privacy, autonomy, spontaneity, creativity, and freedom of choice in my own treatment, including the choice to have no treatment at all.
If my daughter teaches me nothing else in this life, the fact that she made me see her in her fullness and hear her voice, which turned out to be louder and truer than all the false lies being told in this corrupt, disability industrial complex, is enough to fill a mother with humility, gratitude, and purposeful activism for a lifetime.
Her medical records indicated at one point that she exhibited ‘poverty of speech’ but what her treatment providers couldn’t grasp is that her ‘poverty of speech’ was often simply an ancient form of civil disobedience. Even Jesus refused to speak to his captors, except in riddles. Now, in retrospect, it seems natural that my daughter chose safety in catatonic silence or by encrypting her language in ‘rambling riddles’. Why would anyone speak their truth, if their truth will be perceived as a confirmation of a medical diagnosis that itself is the source of great trauma and despair for the truth bearer? Better to retreat in the safety of silence.
Now, she is experiencing the opposite of silence: She has the desire and compulsion to release words that have been pent up for years. Her words are sometimes so unpleasant and filled with such rage that by expressing them, she puts herself at daily risk of being secluded, sent to her room, (‘voluntary’ isolation), receiving ever higher dosages of debilitating medication, or new labels. It is better to be silent and hide one’s hope in the deepest recesses of one’s mind or lash out violently without regard to the consequences?
Please bear in mind that my daughter doesn’t scream and rage all the time. The ‘medicine’ given to my daughter to make her more convenient to take care of, causes her to sleep sixteen hours a day. But when she is awake and alert, it’s not all unpleasant. She is one of the most perceptive, clairvoyant, sensitive, and insightful persons you will ever have the pleasure of meeting. She plays the guitar, dances in the hallway, writes, and dreams in the safety of her own bed. And the workers aren’t all bad. For instance, there is one social worker who plays music WITH her. If you are one of the professionals at this site who occasionally breaks the rules to do the right thing by your client, thank you, thank you thank you!! It is people like you who gave our family hope and kindness when it was needed!
At all of the institutions my daughter has been exiled to, there were always one or two professionals who whispered encouraging words to me and my husband as they accompanied us though echoing hallways and through multiple, locked doors. Sometimes, workers tried to make the barren visiting rooms more presentable (you know the room: single table, peeling paint, two plastic chairs, and a spy cam) by bringing tea for three in Styrofoam cups. Onetime a worker inadvertently and boisterously exclaimed for all the world to hear, as she was assembling a motley slow moving crew of highly medicated patients into a van for a group field trip, “I can’t imagine how traumatizing it must be to be forced to live to this place!” I loved that worker on the spot. Once, a secretary of the Executive of the State Hospital went out of her way to locate her Executive at a Friday evening function, in order to obtained his written authorization, on very short notice, for our daughter to receive an emergency release to attend a family funeral that weekend.
Once in a rare moon, a professional will even step out on a limb and become an ALLY and work with the entire family. God only knows how much heat they must take for that. After all, if our daughter is convicted of a ‘mental illness’ then the entire family must be suspect.
There are islands of peaceful clarity with our daughter. At her current locations, we have Skype sessions (the most recent Skype involved our family singing “For She’s A Jolly Good Fellow” because merriment at family reunions is one of our mad norms) and there are pleasant communications: sporadic emails, cards, and phone calls: all kinds of positive interactions that provide the seeds for her own and our family’s eventual recovery. Even though she says she no longer understands ‘language’ or she claims that she needs “help relearning how to communicate” she usually manages to say the important things perfectly and just needs encouragement to remember how important her voice is. And she gets on track again. Until some meathead mental health worker says something stupid like how sick she is.
These islands of clarity are almost never the result of her forced treatment or medication. They are almost always the result of someone treating her with respect and dignity or because someone remembered to correctly and judiciously reinforce her hope, strengths, and dreams, not her bogus, subjective diagnosis. Some of the workers in these institutions are lacking in any common sense or knowledge of how words hurt. I mean, they don’t even know that people with psychiatric labels experience full recoveries, more often than not! I mean, where do these people get their college degrees? Even my sister-in-law, a brilliant pharmacologist at one of the best colleges in the U.S., once responded to my daughter’s angry outburst (ostensibly to ‘console’ me) “Don’t worry. That is just the disease talking” That is crazy to refer to someone’s justified anger as confirmation of their ‘disease’ or to refer anyone by their ‘disease.’ This is madness! Since when did extreme emotional outbursts after being forcibly treated in a manner that the United Nation’s calls ‘abuse and torture’ constitute a confirmation of ‘disease?’
In institutions, we tend to medicate people experiencing extreme states into catatonic silence regardless of their need to process grief or rage (negative symptoms over positive symptoms) just to keep them from disturbing others. Wouldn’t it make more sense and be less stigmatizing to treat the caregivers instead and not warehouse people in distress together? I identify with being a temporary caregiver for my daughter because I and my husband of 30 years are seeking guardianship to get our daughter out of the infernal cycle of institutionalization. It’s not an ideal solution but it’s a realistic solution since there are no Soteria places where we live.
My point is that I would love for someone to treat me or our entire family, instead than just treat our daughter. But we have no Open Family Dialogue where we live and the ‘off-the-rack’ family therapy (talk therapy) that is available in our community almost always focuses on the diagnosed individual, not the entire family system.
And what would I hope to achieve with therapy? Surely not learning to ‘accept my daughter’s illness’. Hell no. I want something far more valuable: like treatment to help me to view my daughter’s rage differently. What if a family member’s rage could elicit from me the same sympathy and compassion I feel when a family member weeps or steps on a piece of glass and needs first aid? Or education or treatment to help me discern whether an undesirable behavior is caused by side effects of harmful diagnostic labeling, learned helplessness, over-medication, harmful side effects, family dysfunction, unhealthy relationships, betrayal of trust, psychological damage from years of harmful coercive ‘treatment’, or maybe just the angst of being human? Or maybe treatment to help me change my perception of ‘undesirable’ or ‘inappropriate’ behavior to begin with. How much of my personal disturbance is escalating or exaggerating the said behavior? Is the inappropriate behavior actually a normal response to abuse or neglect and if so, what is my role and my responsibility? By the time a person has been in the mental health system for years, if not decades, the energy surrounding that person is dense; their walls of protection are built within walls. Where does one begin to unwind the abuse and damage?
And if I am lucky enough to find an appropriate and caring counselor who can treat me the caregiver and take some of the burden off my daughter, what stigmatizing labels to I have to accept so my counselor will have the means to bill the system for his/her services? Recently, I went to the doctor to have a pap smear. When a document was issued in relation to the services I had just received, I read in the top left margin of the paper, the label I had been given: ‘adjustment disorder’.
Previously, I had laughed with my counselor when discussing what label should I should be given in order for our valuable talks to be billable. We had decided on the label together. But seeing the label in writing, something previously humorous gave rise to an uncomfortable feeling that some information had been conveyed without my express permission. Why did this label appear on a document that was produced for the purpose of a gynecological procedure? How will my daughter’s labels dog her for life? How is this information processed and protected?
Her privacy has been violated in the deepest sense possible. Her body has been trespassed upon. God forgive those people who promote the Murphy Bill or who call for funding for forced or coercive psychiatry under the name of healing. My daughter has a right to feel rage. I have very little patience for advocates for the ‘mentally ill’ who receive generous milk and cookies from the system, even lucrative ‘fellowships’ from pharmaceutical companies to share their personal stories but who then discount the need for rights in the mental health system even while their peers are in desperate need of greater protection from harm.
I have even less patience for celebrities who participate in campaigns to to be ‘reduce stigma’ when in fact, they are doing the exact opposite: by giving legitimacy and cover to coercive psychiatric practices. I have the least amount of patience for low paid mental health workers whose job it is to disseminate medication, by force, if necessary but who turn around and call for an end to ‘stigma.’ Excuse me? You don’t have a problem with this discrepancy between what you say and what you do for a living? People who promote the Murphy Bill point to those poor homeless people on the streets. When is the last time Senator Murphy even spoke to a homeless person?
There are many people on the streets today who are being ignored and not treated like human beings. That is their problem. Not lack of access to psychiatric treatment. Sometimes their only contact is with a police officer when another ‘normal’ person has made a complaint. Sometimes because these people do not follow conventions or they appear to be talking to themselves incoherently, they may look and sound sinister. But take a risk and start a conversation with someone who is ‘different’ or may be a little ‘sinister’ looking or sounding. Be prepared to be amazed.
Once, I talked a person on the street who was dirty, shirtless, a little wild looking and who was speaking incoherently to himself. (He latched onto me instantly simply because I made eye contact with him) I listened diligently to his story. It didn’t all come out in one logical, linear stream. It took some radical listening. What I found out moved me to tears. He had just been released from prison. He was raped in prison. His best friend was raped and killed in prison. How many people who are branded as crazy have horrible locked up secrets inside? How many are carrying the scars of our abusive, disabilities industrial complex or prison industrial complex?
I used to consistently greet and talk to the same depressed, weather beaten, person on the street. She was on the exact same street corner every Saturday panhandling and I would routinely stop to chat with her on my way to work. It wasn’t easy to carry on a conversation with her. She was mute most of the time but she knew how to ask for money consistently. I listened to her life story. Her infant baby died years ago. Once, she was very keen to get a hold of some propane fuel because it was the dead of winter. I went to some lengths to get my church to give her the money for fuel. The staff at my church was very concerned that she would spend it on drugs. Apparently, she was well known as an addict in the street community. I was very keen to give her the benefit of the doubt. They gave her a store credit. I didn’t see her for sometime, then I forgot all about her. I was astonished several years later, when a good looking woman walked up to me and treated me like an old lost friend and wanted to hug me. I couldn’t recognize her as being the same woman. She was cleaned up, radiantly happy and surrounded by family. It wasn’t until after she went on her way, that I remembered who she was! She was recovered! She was the lady on the street corner.
How many of the people E. L. Torrey purports to want to help, especially those living on the streets, are running from the psychiatric ‘treatment’ they already received in an institution? How many of them simply want propane, family support to help cope with a loss, and to be treated as equals?
Why do advocates for the Murphy Bill, describe these people on the streets as the very ‘proof’ that we need more psychiatric treatment by force, when in fact, these people provide substantive proof for the opposite: that we need less forced psychiatric treatment, not more. These people already were forced to drink the poison kool-aid and many do not want more. They want housing and dignity and freedom.
They are refugees from the failed psychiatric system that robs people of hope. These institutions are dangerous places that force people to accept abuse in the name of treatment and force them to show signs of gratitude for their ‘care’ as proof that they are fit for release. These institutions are operating because parents and family members are desperate to get their family members off the streets and they don’t think they can keep a family member safe. Families don’t know any better because their only knowledge comes from NAMI and other pseudo consumer organizations who teach that their children’s behavior comes from disease and cannot be handled any other way other than medication. They don’t know about Dr. Mosher’s achievements, MindFreedom, the I Got Better campaign, the Soteria movement, the need to demand their law makers for accountability in the mental health system, the need to demand for alternatives that first do no harm.
Our children who are surviving in the mental health system need a massive rescue operation from psychiatric harm and oppression. Our children who are keeping their personal inviolate truths safe by encrypting their language need loving listeners and code breakers, not medication.They are using their very bodies as a mirror, inviting the rest of us to see our collective ugly side and calling us to do something about it. Do we have the courage to make eye contact with our children and stand in solidarity with them?
Talk to people who are different. Listen to those who mutter or shout to themselves. Visit the untouchables. Visit the people in jails and psychiatric units. When you do, you will understand that there are ‘islands of clarity’ in everyone’s speech. Learn to listen from the heart.
Think about what we consider success for a child in this culture. Many of us parents start off trying to groom our children for Harvard and an elite life, or whatever society deems successful but our society is devouring our sensitive children.
In some Native American traditions, a person kept their totems tucked safely in their ‘medicine bags’ These were reminders of their animal protectors and as such they are very personal, very sacred; not something to be taken lightly and displayed.
Everyday, we see more and more evidence that our children’s protections are being taken away. Children and young adults are being bullied, trafficked, abused, and monetized. They are on billboards for Calvin Kline or groomed for college football. They are put into the foster care system and drugged.
Every child has the divine right to exist and be a vehicle for divine love but unfortunately their worldly protections are weakened or absent because our entire culture has been infected with salacious greed. Fewer and fewer of our children will enjoy worldly success and protection unless they are born into a privileged class. Today’s children must work incredibly hard, under lots of harmful influences, to find their connection to the divine. Children are not taught that their bodies are sacred so by the time they reach adulthood, they have few boundaries.
My daughter understands the darkness of our dominant, sick culture. Every day she walks in circles in a small sixteen bed locked facility from the corridor comprising the row of patient rooms, to the day room where the television is located, to the nurses station: a grisly, architectural wart surrounded by soundproof, bulletproof glass through which patients, at risk of their dignity, must approach and speak, through a speakerphone in order to receive some small grace such as a washcloth or a piece of soap. This is her universe. She hasn’t left the facility for six months. Not a single walk around the block, not a drive in the car to a store. For six, agonizing years, she has stayed at facilities like this for similar stretches of time, afforded few of the freedoms you and I take for granted.
That has been her life for six years. And her caregivers blame her when each medication fails to soothe her rage. They blame her when each ‘behavioral modification’ fails to produce good behavior. Such as when they offer to buy her a latte drink at the 7-Eleven across the street when she goes a full day without an ‘episode’ as one would reward a dog with a bone (my husband’s metaphor)
So she protests by shouting to the walls, as she has for nearly six years, her courage and love intact (endangered but not extinct) and I love her dearly and can’t wait for her to come home once again. I imagine there will be some shouting at home too as well as times of laughter and joy. But I will listen to her rage as well as her words of love but my love will remain constant.
Thanks for all you continue to do to amplify the voices of psychiatric survivors. It will be an honor to help you with your technical needs so you can continue to be heard. The world needs to hear what you have to say.
Statins, sorry about about auto correct
Good job of connecting the dots. I have long suspected that the issues such as biased research or deceptive marketing practices of Big Pharma are not limited to the field of mental health but rather, they exist in all branches of medicine. Your example about the technological gimmick for heart disease is perfect. The big difference is that people with heart disease are not involuntarily medicated with stations if they refuse treatment or wish to seek alternatives.
Good point about beaurocrats. We tend to forget that beaurocrats do not need to be accepting bribes to be classified as unfit to fill the role of protecting the public. In federal agencies mandated to protect and manage our national forests it is quite common to encounter individual employees who identify with being employees for the timber industry. They are so old school they can’t even understand the conflict of interest.
For this kind of litigation to succeed in the future, there needs to be more scientific data to counter the pseudo science and more scientists willing to study what happens to the brain react during withdrawal. Unless there is a solid body of evidence to prove that iatrogenic harm experienced by hundreds of thousands is not ‘made up’ or that psychiatric drug withdrawal causes acute harm these lawsuits will fail.
My son, after a failed suicide attempt entered a psychiatric facility voluntarily. After an hour long interview they diagnosed him with bi polar disorder and prescribed 1,500 mg. of Seroquel daily. After gaining one pound per day for thirty days, he was discharged. We refilled his prescription but he stopped taking the Seroquel cold turkey without telling anyone in our household. Miraculously, he was able to deal with the cold turkey withdrawal and only experienced minor insomnia which he dealt with through self taught meditation. He dealt with unemployment and the loss of his girlfriend by developing new hobbies, including music and by seeking spiritual support by attending church services and doing occasional volunteer work. He continued to work out at the gym every week and lost the unwanted fat. During episodes of ‘brain zaps’ and high energy he climbed trees, and worked in the garden. He found that it was therapeutic to remove weeds, including blackberries on our property. He could work as fast as a bulldozer. Pretty soon, his reputation for weed removal became known in the neighborhood and he was hired by neighbors to remove weeds. The employment, though it was very low wages, improved his confidence and helped him practice his social skills. His paranoia started to decrease and gradually the original trauma that had him wound tight as a drum started to heal. He learned how to build a small forge and made his own custom machete to augment his weed removal. He made his own tools and some of his projects were quirky but we developed a high tolerance for his wild, unfinished projects, seeing as how they occupied his mind and hands. He gathered wild seeds and experimented by planting seeds in a greenhouse. He manually increased the production of wild foods and herbs on our property known to have beneficial medicinal effects. He gave up caffeine in favor of tea and began experimenting with making his own tea blends. He experimented with his diet and ended up eating a diet that is more or less a ‘paleo’ diet high in proteins and vegetables/fruits. Today, he is working as a seasonal wildland firefighter and putting himself through college during the off season. Every day, I thank the Lord that he escaped the bullet of long term Seroquel use.
When he was on Seroquel, I took a fraction of his daily dose to see what it was like and it frightened me. It caused me to be disassociated for several days, as if I was perceiving everything in my environment through an inverted telescope. I won’t rest until everyone who has been given a psychiatric diagnosis and told they have to take meds for life is informed that they have been lied to and misinformed.
You raise a good point. Dr. Mark Foster after experiencing an ‘ephiphany’ after reading Anatomy of an Epidemic’ by Robert Whitaker gradually changed his prescribing practices. Eventually’ he was fired by his employer, an HMO in CO for ‘not prescribing enough medication’. I’m sure this didn’t happen overnight. The
Process undoubtedly started with patient complaints. Patients can be adverse to lifestyle changes and are encultured to believe that there is a pill for every challenge.What to do in this environment? Considering the level of integrity left in the profession of medicine, one can hardly call it a noble profession, therefore if one generously desires to heal others, consider a lower standard of living or become a badly needed activist and usher in choice in the mental health system and change the billing practices so that every person in distress could get a free massage from an LMT, free reikki, free peer counseling; Demand that alternative serve providers who ‘first do no harm’ receive the same authority and respect as physicians in every legal and economic institution under the law. Until this happens there is no choice in mental health and people in crisis will continue to get the same sh*tty treatment for mental health unless they have privilege and are people of means.
My brother retired after practicing medicine for twenty years. He is now a landscaper and an unpaid caregiver for our father. Is it financially difficult for him to no longer have a six figure income? Of course but I’ve never seen him happier.
Karen: Congratulations on your success! This sounds like a lot of fun! I’m interested in planning a recovery camp for Oregon in the U.S.! What was your planning timeline and was your event self supporting (i.e. were your costs covered by admission fees) or did you need to raise money through philanthropy to close the gap?) Please send me any information you have time to send me privately. My email is [email protected]/ Thanks!
Great comment Rossa!
Great points Karen!
I celebrate your victory over chemical restraints against children in the foster system.
Unfortunately, the chemical restraints against young adults such as my daughter will become easier to apply under the law if the Murphy Bill is passed.
This is where big Pharma has marshalled its forces for the time being. This is the major front.
Unfortunately, the spirit behind the legislation to protect children in the foster care system is not carried over to adults who are considered a ‘danger to themselves or others’ by their family members. Tragically, pseudo consumer advocacy organizations such as NAMI are behind the Murphy Bill giving it a veneer of legitimacy. As a parent who has spent the last six years seeking the fellowship of other parents whose adult children were repeatedly involuntarily committed like my own, I can tell you from experience, that the unresolved grief and trauma of the parents of hundreds of thousands of the ‘mentally ill’ has hardened into cynicism, militarism, and downright hatred for agents of change such as authors on this site.
I can also tell you from experience that parents who have bought into NAMI’s propoganda are grateful for the lower legal standards of commitment in the Murphy Bill, they do not care about their child’s constitutional rights, and they are clueless as to the relationship between the personal agency and empowerment of their child and his/her recovery. Furthermore, they do not listen to or acknowledge the stories of those who recovered without medication; they pretend these stories do not exist and they become irrational and angry when you suggest that their child could be better served under a different paradigm of mental health care, one that valued choice and empowerment of their child. Because they are stuck in the morass of their own trauma and grief, when they ‘lost’ Johnny to ‘mental illness’ they buried Johnny and acquired a new permanent identity, of a parent whose sole function was to reduce ‘stigma’ and get the rest of society to have pity for their child based on their child’s faulty genes and disease.
Not being able to go through another 9-1-1 crisis or the cycle of hope to hopelessness, they simply decided to shut down, reasoning that Johnny as a zombie was better than Johnny going in an out of crisis.
Although I share your optimism that big Pharma may be conceding the issue of chemical restraints against children in the foster care system, the Murphy Bill appears all but inevitable with the powerful lobby of NAMI behind it.
I know you didn’t mean to imply that the newest generation of Veterans don’t need help. WWII Veterans did have one important advantage over the newest generation of returning veterans; in 1945, there weren’t any have pseudo consumer advocacy organizations like NAMI touting that there is a pill for every trauma, including the soul wounds caused by the atrocities of war. Plus, WWII Veterans weren’t living in an era when big Pharma paid billions to convince congress, the Pentagon, and the VA to spend over 15% of the VA’s annual budget on meds . Just think of the real help those billions could purchase if they weren’t squandered on harmful and addictive meds.
I agree with part of what you say about the Greatest Generation returning as young men and going on to lead normal lives. This would appear to suggest that the majority of the returning were able to pull themselves up from the boot straps despite extremely traumatizing experiences but many of those who returned did not experience combat, being bombed constantly, or imprisonment. Most, who were wounded in combat during the forties died in the field and simply didn’t return, unlike more recent OIF/OEF Veterans.
Of those who did experience combat or who were wounded in combat, as was my father, let me remind you that their trauma didn’t just disappear, it simply got handed down to the next generation.
In WWII, the field medicine was not as advanced. Mortally wounded or brain damaged individuals tended to die in the field or in the less than sanitary conditions of the nearest field hospitals. My dad was extremely lucky not to have lost his arm to gangrene after being shot by mortar fire.
The VA only recently released data on those who were the most severely affected by their combat experiences. In fact, the data shows that the VA performed 2,000 lobotomies on WWII Veterans. This doesn’t take into account WWII Veterans who had other atrocities done to them such as shock therapy, insulin etc. How many were institutionalized, died from alcoholism, were incarcerated, homeless, etc. I’m not sure if those numbers were tracked as they are today.
Today, I think we have a greater handle on rates of homelessness, incarceration, and addiction involving Vietnam veterans and OIF/OEF Veterans. This information is routinely harvested during the intake interviews of most food banks, social service agencies, etc. In fact, the rate of military sexual assault, now that females account for 10% of active duty service members, is now being tracked as never before. This is a first.
I would dispute that the greatest generation gritted through their trauma. My dad, who is a service disabled (Battle of the Bulge) WWII Veteran who will turn 90 this year clearly suffered from PTSD all of his adult life. We children range in age from late forties to early seventies and all bear the mark to various degrees of being raised by a father who was depressed, agoraphobic, and emotionally detached.
One of the most scary and shocking things that separates the war in Iraq/Afghanistan from other US wars is that for the first time, psychologists and psychiatrists were embedded in combat units (arguably in direct violation of their profession’s code of ethics) for the express purpose of patching up severely traumatized combat soldiers, and making them fit to proceed in battle. In fact, for the first time in US History, we will be dealing with the after math of soldiers who were given high doses of legally prescribed psychotropic medications while still in the field! Unlike in Vietnam where the drug of choice was pot and heroine (thankfully, my husband who is a Vietnam Veteran did not return as a heroine addict) for OIF/OEF Veterans the drugs of choice were Seroquel, Zyprexa, Ativan, Geodon, Xanax, etc. Absolutely scandalous.
Given the high rate of people coming home today with complex PTSD, brain damage from explosive devices combined with trauma, while being unscrupulously drugged with all manner of harmful drugs, is it any wonder that the newly returning will face a different set of demons?
Add to this mix the following fact: only 1% of our population were affected in George Bush’s all volunteer ‘poverty’ forces as opposed to the 5% of households who were affected during WWII when the draft made service c ompulsory, one must calculate for the arguably greater isolation that today’s returning Veterans and their family members face as opposed to the isolation felt by larger numbers during WWII.
Thanks will! Great article. One word of caution…the so-called progressive liberals can be horribly backwards on the issue of forced psychiatric treatment and obtuse on the need for human rights in the mental health system. In fact, sometimes there is better coverage on the issue of government overreaching its authority preventing individuals making their own health decisions on Fox news!
Margie: I agree with everything you say. In my years of working for social service charities and in the poverty alleviation movement, I observe that well intended social workers are encouraging poor families to have their kids labeled; the SSI is desperately needed to increase household income. In fact, without one or two children in the household receiving SSI, some families cannot even reach the income threshold necessary to stay housed ( And I’m talking section 8 bare minimum housing; nothing fancy)
So, how do we roll back this mess without promating more welfare queen sterotypes? The far right has spent the last three decades waging an effective war against the poor, portraying all poverty as proof of a chacter flaw?
One suggestion I would make is educating the workers of the Catholic Charities organizations who are in the trenches arguably delivering more donated food and providing more housing support than the federal government. The Vatican hosted Robert Whitaker and Joanne Moncrieff to a debate on this topic. You can view clips from that event on this site. Even if the Catholic hierarchy is divided on the topic of labeling children, they understand the social justice issues behind poverty, racism, and discrimination and the workers tend to operate independently of the hierarchy.
I forgot to mention the data on psychosis super sensitivity is much needed. My daughter was lucky enough to get assigned to a conservative prescriber after many years of coercive status quo psychiatry but that person took her off multiple medications simultaneously without tapering her slowly after years of being on invega and zyprexa (which only served to make her worse).
She had a horrible relapse as a result and because she had been shipped 400 miles from her hometown it was challenging to rally her hometown supporters to visit, call, write, etc.
Good intentions such as reducing reliance on pharmaceuticals can go horribly awry if we don’ t develop a better understanding of the way neuroleptics change the brain and develop a nationwide network of psychiatric drug withdrawal support groups similar to AA.
The cost of treatment may go up per individual during the first most difficult years of psychiatric drug withdrawal if social supports during the acute phase cannot be delivered by compassionate trained volunteers or peer counselors. But the long term savings to the taxpayer could be enormous as more and more individuals evolve from chronically dependent ‘sick’ people to happy productive self sufficient tax payers.
I am so grateful for the new module featuring Eleanor Longden. Thak you from the bottom of my heart! The animation is spot on and the entire training is succinct, gripping and professional!
And the best part about it is the accessibility! Not only can everyone on my family take it for free, the CEU version is so affordable at $15 that I can offer to pay for the tuition of key mental health care workers who are working with my daughter who is civilly commited. She is warehoused in a sixteen bed secure facility in Umatilla and not getting the hearing voices support that she needs. It’s all meds, meds, meds.
Do you have any suggestions for a parent in how to get staff yo take this? I can’t afford to go in with guns blazing. It usually makes things worse
1) by making staff more resistant to our visiting our daughter
2) by appearing to be ungrateful for her ‘treatment’ there is a tendency for some staff to relish the ‘confirmation of how “sick” she is when she reacts negatively to the routine human rights violations that are implicit under the paradigm of forced care.
If the order came from the Oregon health commissioner for state workers to take this training that would be so helpful!
Who is going to lead the charge to get this in every mental health training curriculum of every community college, medical college, NAMI chapter, etc
I meant tempted her with morsels. Steve, I hope you saw this auto correc
My daughter was catatonic in the ICU long enough to be catheterized but not long enough to be on a feeding tube. The shrink wanted to shock her and I looked into getting an emergency injuntion.we vigiled by her bed and talked to her and played music for her. We even got the shrink who wanted to shock her get out his guitar and play for her. We bathed her and got friends and neighbors to visit. We brought flowers and essential oils and smudging sticks. Our priest came by and anointed her with healing oil. We healed ourselves and whispered loving words in her ears. A peer counselor came to her bedside and told her she was important. We has family meals around her bedside and tempted her with models. The shrink gave her ativan intravenously. The director of medical ethics talked to her when she started to utter syllables and he ascertained that she did not want to be shocked. Catatonia is not a disease. It is a despair so deep that one loses the will to remain in the body. The ativan was a helpful tool in that situation but the community and inclusivity and love was critical. Empowerment, hope, and love heal more deeply and effectively than chemical fixes. My daughter pulled out of the coma like state in 10 days. Unfortunately she was put in an institution and forcibly drugged with neuroleptics and cut off from visitors after that so the miraculous momentum of recovery was impeded greatly. She is still struggling but has never become catonic ince that time. I only share the story to show that the alternative to shock worked
You have every right to be angry, very very angry. And you ask a good question…
Why are the good psychiatrists not marching with us in the streets? I would posit the following reasons because they focus on the issues, not the people.
Deomoizing psychiatrists rarely gets our movement anywhere. Here are just a few of the reasons as I see them:
10 No one invited them
2) No one invited them again and again
3) Because no one is tracking a mailing list related to people who are invited to protests, keeping all addresses current, tracking the mailings, and the outcomes of each mailing
3) Because no one developed a national organizing committee to coordinate protests dates, times, priorities, purposes, and messages, etc.
4) Because no one is developing a strategic, consistent multi-year communications plan in regards to the media
4) Because no one raised enough money to rent a permanent office space
5) Because no one raised enough money to hire permanent staff whose jobs were to coordinate protest events, provide resources and training to other protesters, etc.
5) Because no one is solely focused on building a national coalition with other social justice movement leaderss
6) Because no one is solely focused on training and leadership development for protesters.
Do you want me to go on? I could list 100 or more reasons why psychiastrists didnt show up. The same reason applies to why other activists, consumers, psychiatric survivors, and family members didn’t show up
If we are going to blame anyone for our problems, lets start with ourselves.
This doesn’t take away from the incredible and marvelous that organizers of the International Day of Protest against Shock, Its a tremendous accomplishment and the leaders of the protest as well as every attendee deserves a lot of praise but if you want psychiatrists to attend, the protests will have to reach a new level of organization and attendance. The protests will have to have cachet, guarantee of media coverage, famous speakers, funding, timing for media tie-ins, and other resources.
This will all come in time. Have faith and it will happen
This comment needs to be copied (after a few typos are fixed) verbatim and sent to every editor of every daily newspaper, church newsletter, and medical jourmal in the US. Don’t change or add a single thing; This is one of the best comments I’ve read on this site, ever. It needs to be circulated far and wide and shouted from the mountaintops. Thanks for sharing groentje.
I was just fantasizing how nice it would be to have a MAD PRIDE van and travel all over the country talking about the wealth of alternatives for treating emotional distress and extreme states. People just need confidence on how to deal with a crisis. If we could give one another confidence and rebuild the village, so to speak, where human beings and neighbors care for one another, we could get millions of Americans off these harmful medications and improve the quality of life
My daughter’s experience on a depot injection of Invega was horrible. She became much worse and to have no agency over what goes in ones’ body, is so psychologically harmful, a deep depression goes hand in hand with this type of coercive ‘treatment’. There are degrees of harm of course and it is equally harmful for people to know that if they refuse to take an oral medication, a triad of doctors will sign a medication ‘override’ making it legal for orderlies to jump a patient, pull down their pants and inject them with force. Brutal.
I’m convinced that people metabolize these drugs differently. I’m positive that there were times my daughter was getting a higher than normal dose in her bloodstream or a lower than normal dose due to her metabolism while on these awful depot injections. Whatever built in mechanism these injections rely on to provide a steady stream to the bloodstream, they are not infallible, believe me. They are risky and should be outlawed.
I am very inspired by this! How wonderful that these results could be documented and presented to the public in such a meaningful way. Perhaps the success of this project could serve as a beacon for other communities. In Portland, Oregon, an organization called Folktime is trying to establish a peer run respite. I wish you and every other community the best of luck in establish more of these respite houses. They are a critical piece of the puzzle.
I agree that the field of psychiatry needs to be better regulated, not sure of eliminating psychiatry altogether as some suggest because my daughter sincerely needs an expert in pharmacology to help her safely wean off these deadly neuroleptics before they permanently damage her brain or kill her…Please be respectful of those among us who simply can’t pull themselves up ‘by the bootstraps’ because discontinuation syndrome is a very real issue and the fear of ending up in the hospital due to super sensitivity psychosis and ending up on even more drugs is very real. I for one, hold out that psychiatrists will feel comfortable enough to visit this site regularly and see that our alternative directory needs more names!
Fred, I have the highest regard for your work and I’m thankful for your leadership. Truly. But I don’t agree with suggesting that we should shoot psychiatrists with a needle and exile them on a ‘space shuttle’, even though you are obviously being humorous. This only serves to exacerbate the growing hostility between consumers/family members and their treatment providers and make it less likely that the few good psychiatrists who are left will be willing and able to have a dialogue with us and learn from the anecdotal evidence and convince their peers to support our movement.
That having been said, I once sampled my son’s seroquel (only 1/3 of his tablet out of fear) and I was shocked at what happened to my body and my psyche from less than a single dose. And the effects took several days to wear off. It was a negative experience and very frightening. Because of my experience, I think all prescribers and caregivers should be required to take a neuroleptic at least once and write in a journal about their experience. I think this would result in far fewer prescriptions written because psychiatrists would understand why so many people are non compliant with their medications. This may also make it more likely that we would finally get some research funding to understand the nature of super sensitivity psychosis when people discontinue a dopamine blocking agent, protocols for safely weaning off people, and the formation of badly needed social supports for people who are voluntarily withdrawing from meds for any reason.
Plus, now big Pharma has a big medication adherence campaign to remind all American to take their medications, not just the ‘mentally ill’ It involves billboards, TV ads, etc. David, if live outside the US, consider yourself lucky They are greasing the skids for the inevitable push back when depot injections become the ‘treatment of choice’ for anyone who shows the slightest sign of psychosis or disturbance.
Well stated J!!
Those moms and their children are lucky to have had someone like you on their team. And frankly, although your education as an MSW trumps my own level of education, it never ceases to surprise me how little one’s level of education has to do with one’s effectiveness on a personal level.
For a clinician to be helpful and supportive it’s amazing how much it just boils down to whether the clinician has empathy and can exercise common sense which is probably what you did and why your clients still keep in touch.
In the field of mental health, where recovery would be the norm if we chucked the ‘disease’ model out the door and focused on supporting people as human beings, we have done our children a grave disservice by outsourcing our their mental and emotional needs to medical science. It’s time to empower care givers and educate the entire community on how to welcome back our children, don’t you think?
I would also like to urge people to volunteer at prisons and visit prisoners, when possible. Prisons are usually located in run down, rural communities making travel for visits challenging. Families of prisoners often cannot afford the travel/lodging required to visit a loved one. If you can’t be a volunteer, consider making a donation to a family who is struggling to find the resources to visit a loved one. It will make a huge difference. Studies show that prisoners who maintain contact with family and friends, despite the enormous challenges involved do much better when they get out!!
Just to give some perspective here, Cook County does have a disproportionate number of inmates with psychiatric labels. To be sure the Treatment Advocacy Center will distort Cook County using it for propaganda bent on more forced outpatient treatment but on the bright side, there are some marvelous, trauma based therapy programs for female inmates at Cook County. Not all prison psychologists are obtuse. Many realize that there is a huge difference between trauma based therapy and band aids/chemical restraints.
You can get a flavor of the Justice programs for female inmates at Cook County here:
Cook County also allows the female inmates to participate in a wonderful playwright program in which inmates write their life stories in the format of plays and perform them for audiences. I once tried to arrange for a local showing of Cook County Jail’s touring performance troupe but I couldn’t find a financial sponsor for their airfare/lodging.
Incidentally, I wouldn’t have known about this project unless I had volunteered for a local justice project called The Portia Project operating in my state of Oregon. Their website is at http://www.theportiaproject.org/
The wonderful thing is that these kind of prison justice projects are sprouting up all over the US. The trend is currently for people of faith and people of color and advocates for prison justice to organize to reduce mass incarceration and reverse the negative impacts of mandatory sentencing and the racist war on drugs. They are doing this through legislation and by creating softer landings for people when they get discharged (job and housing support, access to addiction services, legal help to reunite families, etc. )
This creates an astonishing opportunity to build important alliances because this prison justice movement has a lot more momentum currently and is a lot more organized than the movement for human rights in the mental health system.
The prison justice movement is successfully raising the consciousness of Americans by working within communities of faith and communities of color. Before Big Pharma co-opts this movement as they did the peer movement, our leaders should be meeting with the leaders of the prison justice movement, executing intensive, educational campaigns targeted to these leaders. Education is needed to prevent pharmacology from becoming the standard of treatment for prisoners, as opposed to peer led services, talk therapy, hearing voices, etc.
I’m not sure what your point is but I want to understand it. Could you reframe this? Are you suggesting that that there is a huge disparity between what clinicians are observing after administering SSRI’s and what patients are reporting after using SSRI’s? If so, I am unaware of this disparity. If I had to guess, I would predict that clinicians tend to report overly optimistic findings (unless they are participating in a double blind study) not the patients because patients often are afraid to appear resistant to treatment and have this strange desire to ‘please’ their provider. Could you please describe this disparity in greater detail? (are you referring to a study and if so, could you offer a citation) Are you saying that ignoring the sixteen questions about sleep, work, etc. and focusing on the single question having to do with “feelings” of depression is resulting in some kind of explanation for this disparity in findings, about which I don’t know anything?
I couldn’t agree more! Medical science is rapidly losing credibility on many fronts. Recently, the the saturated fat myth of obesity has been debunked. Oops! We had it wrong about cholesterol all these years, after five trillion dollars of nutritional marketing. Oops! We got it wrong! We didn’t know about the ramifications of over- using antibiotics. Oops! We didn’t predict that developing a disease called menopause and developing a ‘cure’ called estrogen therapy (manufactured from pregnant horse urine) would lead to thousands of women experiencing strokes. Even though all of these mistakes don’t amount to a hill of beans compared to the damage that has been meted out in relation to the fraudulent premise of the chemical brain imbalance of mental illness, we should make alliances with people who have been harmed by lousy medical guidelines in general, not just the field of mental health. We need to form a giant consumers union and get someone like Ralph Nadar to understand the magnitude of iatrogenic harm that has occurred because of the undue influence of big Pharma in the field of medicine and start developing a giant patients Bill of Rights that covers every diagnosis under the sun and train people, especially disadvantaged people to value their right to question any diagnosis and treatment.
Great question! I want to know too.
Thank you Margaret for the straight talk. I wish more elders and retired professionals would speak this frankly on the topic of what goes on in the board rooms of major corporations who are targeting our society’s most vulnerable. It’s amazing, how banal evil can be, as banal as CFO’s sitting around discussing marketing strategies.
Unfortunately, my child, a young adult, is stuck in the system after six years of cycling in and out of institutions due to attempting to come off her meds cold turkey on multiple occasions. During her frequent hospitalizations, my daughter was inconsistently cooperative with providers in the system who were smart, diligent, and compassionate enough to explore the subject of adverse childhood experiences that may have contributed to her original break-down. Those workers, even if they were the exception, not the norm, gave her helpful little insights which she could process when she was receptive, which is saying a lot when you are a ‘sick’ patient and your trust in therapeutic relationships has been shattered because of psychiatric coercion and hypocrisy.
Which leads me to reflect…I’m convinced that the only reason that trauma informed approaches are not used CONSISTENTLY over pharmacology as the treatment of choice for early psychosis is the sometimes irrational fear that family members harbor that they will be blamed for their child’s distress. I believe that the underlying purpose for NAMI is not to advocate for the ‘mentally ill’ as much as it is to create a networking site so parents can assuage one anothers guilt. Forgive me, if you are like NAMI but I believe that it is an organization for family members, not consumers.
Even for parents who do not identify with having abused their child(ren), it’s time for parents to do some priority shifting and alleviate some of the huge stresses that our children are experiencing in general. Our society has obviously gone off the rails. In an era when we build nuclear bombs to promote security, when free market capitalism is promoted as a prerequisite to freedom even while human beings are trafficked under our noses, when the price of year round, exotic fruit is artificially made affordable by feudal systems in Central America and by squeezing every last drop of shale oil for shipping. Kids are coming of age sexually in the age of internet porn and we parents who are working multiple jobs to achieve the ‘American dream’ aren’t slowing down long enough to tell our children about love and intimacy, let alone model what it is.
Any shame or embarrassment that family members may experience by having an honest dialogue with a child(ren) who has received a psychiatric label dwarfs in comparison to the pain and suffering that child is likely to experience after being scapegoated as the ‘sick’ member of the family, stigmatized by society, institutionalized, and forcibly treated with drugs that make them feel suicidal or hopeless.
As you know, young people who come off their meds cold turkey without supports in place often end up back in the hospital being put on even more drugs, delaying their ultimate recovery and testing the emotional resiliency of their entire family. At times, the discontinuation of meds causes our children to experience akathesia and even become violent, making their legal situation ever more precarious.
For example, my daughter punched a staff member recently. Even though her violence was clearly the by-product of iatrogenic harm (during a med/dosage switch) this kind of behavior as well as other behaviors such as resisting restraints, and attempting to elope from several institutions, is used as proof of how severely ill she is. Indeed, the fact that she has been hospitalized seven times in the last two years (including one year long stint in the state hospital) is used as proof of her illness, like a kind of circular logic, giving ever greater weight to her back to back ‘civil commitments’, never matter that the criteria for admission to these hospitals, whether private or public, is applied in a wildly inconsistent and discriminatory manner which has more to do with finances and billing, than it does medical or behavioral appropriateness.
Not only were her previous hospitalizations completely inappropriate at times, they serve to highlight the shocking lack of alternatives available for individuals who would be better served with non-coercive treatment modalities and social supports, such as community based-mobile crisis units that make home visits, peer delivered services, respite houses, and clubs, supported employment and vocational training, open family dialogue, compassion based therapy, theraputic assessment, hearing voices, etc.
Although I know that this article focuses on children, there is a sizable population of young adults like my daughter (whose brains are not completely developed yet) who are being forcibly treated with neuroleptics just because our communities do not offer alternative interventions or because the iatrogenic harm that resulted from our children’s ‘treatment’ caused them to act in bizarre, even violent ways, in complete contrast to their personal history before they ever experienced psychiatric assault and abuse.
I merely share this in the hopes that we do not forget about those who have spent time in jail or had one or more violent episodes due to iatrogenic harm. When our children have these episodes documented in their medical records, it dogs them for life. Ditto for children in the juvenile detention facilities. There is a huge trend of drugging ‘deviants’ or treating criminal behavior of children as if there is an underlying ‘disease’ behind it.
Many young adults, including those without a criminal history are seeking a drug free lifestyle and envision a return to personal balance and health without harmful neuroleptics. Meanwhile, there is a movement underfoot to allow the treatment of children without parental consent. This runs contrary to the goal of families healing together without the use of harmful drugs. In situations where abuse and neglect of children is not evident, we must treat the parents alongside the children and provide supports for children to remain in households where they are loved so long as they feel comfortable at home and as long as parents can receive assistance on how to create a safe, non judgmental environment that is conducive for the healing of children.
On the bright side, despite my daughter having been forcibly ‘treated’ for nearly six years, even during the times when she was rash or didn’t exercise good judgement, she still manages to display an amazing amount resiliency, hope, and forward momentum, aided by accrued insight. I would counsel other parents to not give up faith in their children which is very tempting when a young adult is given the most stigmatizing label of all: ‘treatment resistant’.
Treatment resistant is usually doctor’s code for ‘it’s the patient’s fault’ or this person is really f*cked when the reality may be very different such as this person does not succumb to the idea that he/she has a disease. People who are resistant are very often, the people who have gone to great lengths preserve an internal world of their own making to keep their personal truths of living a very normal life alive. Hooray for people who won’t confess that they are mentally ill, like the witches in the Scarlet Letter!
Even if they appear to be completely ‘lost’ in an internal world, never, ever give up on that person’s ability to regain their interest in consensual reality. Never, ever say that children and young adults lack any insight as if people could be unaware of their own pain or isolation!
Even individuals who often time appear to be incoherent may be navigating realities we can’t begin to imagine and their pathway to recovery as well as the timing, may be something that only they are privy to! The next time you are presented with someone in this state, no matter how difficult it is, please suspend your judgement and your opinions and simply allow yourself to enjoy their presence. You may not be the hero of that person’ recovery narrative, but for Pete’s sake, don’t get in their way.
In my daughter’s recovery process, we have long breathtaking conversations. She has righteous anger teetering on rage. Her self esteem is in the pits. Given that she has been civilly comitted, medicated against her will, forgotten by her ‘friends’, isolated, coerced into accepting treatment and forced to live in communities not of her own choosing, this is understandable. Despite every horror psychiatry can throw out, one thing shines through: her love of nutritious food and her gift of hospitality. She dreams of having her own kitchen again and cooking for herself and others. Many who are are in the psychiatric system are treated like infants or imbeciles, in group homes staffed by paid babysitters, and rarely have the opportunity to grow in a collaborative community to reap the benefits of interdependence. Instead, they remain stuck in the role of sick dependent. One of the most cruel things that we take from individuals when we give them stigmatizing labels and force them to see themselves as chronically disabled is their confidence to nourish themselves and others.
Food, from the garden to the table, is one of the pathways my daughter needs to experience healing on many levels. I just want to get out of her way even as I long to find a supportive role.
When families are healing together, food plays a central role. Breaking bread together forms community and strengthens the bonds of love that bind us together.
The slow food movement gets it. Slowing down long enough to prepare a delicious meal together, saying thanks together and blessing the food; even washing the dishes together while enjoying the privilege of running water (if you have it!) Binds us together and heals.
Fact: 95% of disabled individuals live in poverty, making them food insecure. Evev obese people may be malnourished. Institutionalized individuals like my daughter often have no control over their dietary decisions. Their disability checks are intercepted to pay for processed food from Walmart, cooked by a worker who lacks education in nutrition and probably isn’t even receiving a living wage. I visit regularly with an individual who is forcibly injected with depot neuroleptics. He is fortunate enough to be living independently in a hotel room at the moment but he spends nearly all of his disability check on fast food. When you drill down into the details of what must occur for the liberation for millions from continued psychiatric harm and abuse, control of one’s diet and the honoring of one’s ancestral food traditions is vital for recovery. Let us hope that Bonnie Kaplan’s next CEU lecture to psychiatrists addresses more than the chemical components of nutution but the social aspects of food systems such ad those addressed by Frances Moore Lappe in Diet for a Small Planet.
You have a point that it would be insulting to offer vitamins and NOTHING else to someone who has no home and therefore no kitchen or other means to prepare their own nutritious food, no access to locally grown, organic produce, no meaningful employment, no living wages enforced in their community, etc.
I do not know Bonnie Caplan but if I had to guess, I would assume that her tremendous knowledge of nutrition makes her keenly aware of the problems associated with corporate controlled food production and distribution systems. I would expect that she desires food justice as much as any activist and I think that it is on us to connect the dots.
A psychiatric survivor in Canada is starting a justice project to ensure that psychiatric survivors and consumers in her community have access to healthy food. This has led her to develop community gardens and make alliances in the school to garden movement, farmer’s market movement, and the food security movement. As one activist stated we have to resist the growing trend ‘Big Farm to Pharma’ which in essence is to poison our soil and groundwater with toxic agricultural chemicals’ creating the conditions for an epidemic of malnutrition and diseases such as diabetes, only to create fraudulent paradigms of disease management that compound our problems and make us chronically dependent on government supports.
Thanks for setting the record straight!
Let’s not paint all parents with a broad brushstroke and let’s not liberate one set of ‘scapegoats’ by creating an alternative set of scapegoats. The liberation of parents and children who are trapped in the psychiatric system is tied together. Most parents want their children to be empowered and have choices, to live independently, to be able to pay their own way in the world as opposed to be being permanently dependent on government disability checks, able to travel the world and experience adventure, experience love, enjoy healthy sexual relationships and platonic relationships, resolve past griefs and losses, procreate if desired, know the feeling of being needed, having something to give away to the world, having responsibility. If an adult child is trapped in the ‘sick’ role, please do not assume that other members of the family unit want the child to remain ‘sick’ out of convenience or to keep secrets hidden. It’s so easy to stereotype. Parents may exercise bad judgement or be emotionally unavailable at times and yes, they may be trapped in dysfunctional patterns but they are generally not sadistic, and in a supportive environment, parents are capable of making great shifts in their thinking for the benefit of their children. Let’s not return to the times of blaming the mother for everything to get our children out from under the thumb of psychiatry. That is just stupid and counterproductive.
As usual, your experience as a peer worker in a state hospital brings a valuable perspective. I would like to make a comment that I hope you don’t take personally. Don’t get me wrong. Having peer workers in state hospitals, homeless shelters, front line crisis units, respite centers, clubs, etc. is hugely important. I wish my daughter were so lucky as to receive services from someone like you. There should be more, not fewer peer workers and peer organized programs and services. But there is an inherent problem. I don’t know what to call it, co-optation, perhaps? The minute peer workers receive system money for their services, a conflict arises. Peer workers now join the huge army of workers in the mental health system who have a vested interest in the status quo because their financial security becomes hopelessly intertwined with their healing/helping mission. It is a rare individual who is willing to lay his/her job on the line to do or say the right thing by a voiceless client, let alone on a frequent basis. I think what we need is a huge army of omnibudsmen and healers who are willing to work on a pro bono system for the benefit of those on the ‘inside’. Volunteers are a lot harder to fire than paid workers. Paid workers are often ‘let go’ due to ‘budgetary’ considerations. Being a volunteer gives a lot more credibility to a peer worker from the perspective of a client. My adult daughter who is institutionalized is getting sick of only having relationships with those who are ‘paid’ to interact with her. It takes away her hope and confidence of ever being valued on her own merits.
Could you re read your comment for clues as to why a person of color might be offended by your words. Owch.
This was a very smart subject to write about. The popularity of this iconic figure will result in greater traffic of young people to this site where they can learn about the false God of pharmocology and the many safe alternatives ways of healing from trauma and abuse. We need the energy of this generation to tip the scales.
Registered for this site: I don’t know if you are a legitimate poster because of your unusual atavar but if your story is authentic I’m sorry you have tremors! I recently discovered an organization devoted entirely to educating and providing support for indivuals with TD as well as their family members. Do you want their contact info? And does your prescriber know about the tremors? Is that why he/she prescribed the mirtazapine? If so, did your prescriber discuss with you other options for alleviating the side effects of the SSRI’s such as safely and slowly tritrsting off the SSRI’s while getting lots of psycho/spiritual/social support for the reasons that caused you to seek help in the first place?
Rossa, my memory of her memoir is slightly different than yours. She embraces a very nuanced viewpoint. She did experience multiple attempts at withdrawing from her meds with near disastrous results. Her friends convinced her on several occasions to check into the ER and get back on meds during those periods because she became paranoid, withdrawn in her apartment, disorganized, stopped bathing, and nearly starved herself. She has experienced stigma and discrimination while seeking care and was subjected to dehumanizing restraints (which she legally opposes) and was nearly killed by a doctor who mistook the symptoms of a severe hemmoraging of the brain, akin to a stroke, with a psychiatric crisis in an ER setting. Her friends intervened quickly and she got the urgent life saving care that she needed. admits that her symptoms can only be managed with an older typical anti psychotic which carries a higher risk profile and she accepts this as a trade off of her ‘recovery’. Yes, she is the darling of the psychiatric profession because she is the picture of a person who can function at a high level, conform to society’s expectations of what constitutes success while not questioning the standard of care or the fact that alternative treatment options simply do not exist, which is really a human rights problem. She readily admits ‘I have a brain disease and medications are the only way I can manage my symptoms’ and stays very aloof from the controversies that are plaguing psychiatry. If someone were to ask her about her thoughts about the Harrow and the Wunderlink and Harding studies she would probably respond: “I do what I do best, psychotherapy and law, while I leave those medical research issues up to the experts in the field of psychiatry.” This is a big disappointment. In an interview, spitefully recounted how someone tried to convince her that she could manage all of her symptoms with mega doses of Vitamin C. Her reaction was so spiteful that one could loosely interpret her spite as being a strong critic of orthomolecular approaches in general. A pity. Like Glenn Close, she gives much propoganda value to the status quo while barely nibbling around the edges of authentic scientific corruption.
I think there are more complex reasons for lack of coverage than the media simply choosing to ignore us. It’s on us to create news that cannot be ignored. It’s on us to coordinate events centrally with fewer conflicts and create more generous planning timetables. In my twenties i committed civil disobedience with several thousand other individuals over the issue of nuclear test missiles in the Pacific that were making Pacific Islanders very sick. FYI that action took several years of planning time and involved a national coordinating committee. Per this protest as an example I had not heard about the international day of Shock Protest until after investing quite a bit of time on a steering committee for another MH event scheduled to take place in PDX on exactly the same day. Although i longed to be physically present at one of the local protest events. When i realized the conflict, i made the difficult decision to keep my prior commitment. David Oaks has long called for better coordination of events in Oregon and the nation. Which organization is best suited to create something like the student non violent coordinating committee of the civil rights movement?
The new epigenetic research could be a game changer by preventing slow metabolizers from receiving harmful neurotoxins in the first place with disastrous results. Or it could be another rabbit hole, money pit or worse yet another guilded turd like second generation atypicals cleverly marketed to appear successful when in fact they are not. Better early intervention such allowing people to work through a psychotic state in a safe and supportive environment without using the nuclear bomb option: injecting them with mega doses of Haldol at a time when they most need their executive reasonong, desire, and willpower These options could in part stem the flow of bodies getting thrown in upriver but it will not address the issue of how to compassionately proceed with those who have been incapacitated by decades of harmful psychiatric ‘treatment’. While we proceed to shift the paradigm of care for those experiencing extreme states for the first time, let’s focus lots of effort on building non professional non ‘therapeutic’ relationships with people in foster homes and supportive housing facilities. Let’s enrich our lives with bountiful contact with these folks until we cure ourselves of the delusion of us and them or normality if there is such a thing. These relationships are rewarding and rich not taxingvunless you are getting paid to cultivate the relationship and the relationship is sullied by expectations of reward and return. Let’s stop asking ourselves how we can benefit those who are institutionalized when we visit and spend time with them but how they can benefit us. After all, our liberation is intertwined
Thank you for using your 5 min and facing the fear and the possibility of ridicule and spite. You can imagine our children’s fear while being civally committed and medicated for life. Our young adult children who are ‘treatment resistant’ as if there is such a thing have co-habitated with those who have been on the drugs long term with little benefit to show other than the ability to shiffle from bed to breakfast to the tv viewing area. They are not like Elyn Saks and many of them have lack of cognition, blunted emotion, TD, obesity and a shocking lack of friends. I suggest that people start visiting their clients and family members in these foster homes and supported housing facilities on a regular basis then get a scale of this population of people in their communities who need lifetime assistance to function and the cost of caring for these people who must be those who Dr. Lieberman consider to be the shing example of success and recovery and success and question why our childre and their parents are not taking to the streets demanding better treatment options as when gay people demanded federal research for AIDS? Since when did we parents settle for so little for our children?
Sa! You hit the nail on the head with this comment!
Don’t forget about the importance of art/culture. Artists are the vanguard of all revolutions. Mad pride is important
Great mottos! We should have a big brainstorm.
Frank, I agree with you that we need to protest NAMI and other pseudo consumer advocacy organizations. They are the mouthpieces for all the pseudo scientific mythology that is bouncing around out there with their ‘educational’ campaigns. NAMI is supposed to be advocating for my daughter but they aren’t. They just are a front for big PHARMA and the APA
We don’t need a Michael Moore. We need a Moses to lead us out of this wilderness!
I look forward to reading this book and your ideas about how to neutralize the influence of big Pharma and the APA. For those of us whose children are being forcibly drugged, secluded, and restrained, this issue of corruption and cognitive dissonance is not an academic one. We don’t have the luxury of discussing strategies for how to move an oil tanker that is going in the wrong direction. Those of us whose children’s lives hand in the balance are desperately searching for lifeboats this very moment to save our children from being permanently harmed. The County where I live, Lane County, shipped my daughter to a bleak facility in Umatilla, Oregon, five hours of driving time from our home community. She is not doing well. She has been institutionalized now for five years. The reason I am posting here is because you neglected to point out the extent of the corruption in pseudo consumer organizations such as National Alliance for the Mentally Ill. psychiatry. They offer no help or encouragement to families advocating for individuals who are being iatrogenically harmed, neither do the disability rights organizations.
By the way, this was one of the most well written articles I’ve ever read in this community. Made me want to read much more. This cries out for a book
Glad to see an article from an insider’s perspective of the penal system as it concerns mental health. I stand in solidarity with mothers whose children are incarcerated, even for the most heinous crimes, if those children experienced abuse or neglect when they were growing up. Those of us whose children are forcibly medicated and institutionalized for phony ‘chemical imbalances’ should question why we are grateful and relieved that our children are in mental institutions. After all, our children could be in prison, instead. Yes, every time I drive by a prison, I get a sick feeling in my gut that those places of steel and concrete are places of horror, but how different are they really from the abuse and torture that is routinely meted out in psychiatric institutions? If one is under civil commitment like my child, ordered by a kangaroo court to be under chemical restraints, even while those drugs slowly reduce my child’s cognition, hope, and physical health, I should be grateful that it isn’t worse? The prison justice movement in the US is gaining more speed, arguably at a faster rate than the psych rights movement. Perhaps it’s time to admit that there is only a sliver of difference between prisons and psychiatric hospitals so we can get about the important business of merging two movements or at least form a coalition based on overlapping interests and values? For instance, there has never been so much talk about FINALLY changing some of the driving forces behind mass incarceration: voter mandated mandatory sentencing, the phony war on drugs, racism, abuse of power and penal/police corruption, poverty, lack of housing, jobs, etc. There was a hunger strike by prisoners in the CA prison system to protest solitary confinement. That is big. When was the last time psychiatric patients protested for a common purpose? In two states now, NY and WA, pregnant and nursing mothers who give birth in prison can raise their children in prison (at least for several early and developmentally critical years). These are real steps forward as it concerns prison reform. Our movement has nothing to show for it besides more AOT, more children being drugged, more police swat teams killing suicidal Veterans, etc.
Now that would be something to get united behind! Plus no forced medication!
I have a problem with this strategy of nibbling away at the massive overselling of ‘anti-psychotics’ by going for the Achilles heel of the industry’s practice: off label drugging of children and the elderly. My loved who is forcibly medicated with neuroptics is not helped one whit by nibbling away at the problem of over drugging. ‘You can drug those people who are really really sick but not these people who ate merely inconvenient.
Good point Ted. One must take it on faith when someone says ‘I hear voices’. When people make this claim while seeming to gravitate towards the limelight one is left to wonder if authentic voice hearers are at risk of losing their voices to attention seekers. Just the same we should allow for a wide range of subjective experience. My daughter claims that she hears voices but she also claims that the voices didn’t start until after her second or third involuntary hospitalization, involving restraint and forced medication. Her voices are not like distinct personalities either. They are more like ‘impressions’ and she once reflected that they may be loosely associated with former friends from her past. She claims that they do not command her to do things but sometimes during our conversations she will remark that a voice is bombarding her with expletives. I believe everything my daughter tells me at face value because people like my daughter have very little to gain from admitting that they hear voices.
I almost didn’t go to the IPSP conference because he was orginally scheduled to speak on the opening plenary panel so I wrote off the entire conference. Someone persuaded me to go anyway and to my delight, he wasn’t present at the conference. Does anyone know if he cancelled or withdrew and if so, why?
I forgot brigade is a military term. Duly noted. I work for a Veterans organization that delivers mental health and somatic services to returning veterans. So much of the psycho babble in the mental health industry borrows from the military…for example
‘battling depression’ rather than’ exploring depression’
‘conquering fear’ rather than ‘working with fear’
‘triggering’ rather than ‘eliciting’
Thanks for your tireless efforts to identify strategic pathways to a new paradigm. One thing book activists could do is collectively organize brigades of volunteers to counter the high number of trolls on the internet. Since big Pharma has such deep pockets, they can spend lavishly to hire people whose sole livelihood is to obfuscate data, smear reputations, spread rumors, and reinforce mythology on the internet.
Todd: This is very tragic. But as long as there is life, there is hope. There may be new developments in nutrition and other therapies that ‘first do no harm’ that could help your friend heal from the dopamine supersensitivity he is experiencing. I totally understand the Tourette’s like ‘tics’ that present as unpredictable rage and anger. My daughter on neuroleptics experiences frequent small explosions then goes back to being calm. She experiences them particularly when her dosage is decreased too rapidly. Naturally, we are very keen to reduce her medications to the greatest extent possible, even eliminate them all together when and if that can be safely done, but withdrawal is fraught with risk of a loved one experiencing a withdrawal crisis that is misinterpreted leading to hospitalization and even higher medication. Treatment providers, unconsciously hostile to consumers and loved ones seeking alternatives to meds, often taper people too quickly, a set up for failure and an almost sure pathway to getting on even higher doses and polypharmacy. It is really important to work with a supportive and compassionate prescriber during the withdrawal/reduction phase but in our experience, such providers are few and far between. But as long as there is life, there is hope. Never, ever write anyone off! Your friend is lucky to have you in his court. I hope you correspond with him regularly and let him know that he is not forgotten!
Fat is essential for good brain health. There is no question. It’s a matter of what kind of fat. This article does a poor job of distinguishing between good fat and unhealthy fat.
Truth in Psychiatry:
My name is Sarah Smith and my email is [email protected]. If you have time, could you let me know how you were able to find a Open Dialogue trained psychiatrist in your area? Open minded therapists such as LCSW’s and peer counselors are not too difficult to locate where we live but open minded psychiatrists? I’ve never met one who had ever heard of OD, let alone the mad pride movement, hearing voices movement, etc. Any encouragement you could offer would be greatly appreciated. I’ve already checked the directory on MindFreedom, FEMHC, etc.
Daniel: I haven’t seen the video yet but I look forward to doing so. My husband and I had the privilege of attending an all day workshop by Mary Olsen on OD at the ISPS conference and we were very inspired to find a practitioner in our state (Oregon) who embraces the principles of OD so we can explore this avenue for our daughter. Thanks for this article.
Are there ways that you could retroactively identify and contact individuals who are enjoying a good life because of their participation in OD and interview them instead, (not necessarily those clients whose cases were the focus of your first video?) Could you then update your video by inserting those clips/interviews into the film retroactively or creating another video augmenting the first specifically to highlight the client’s perspective? I ask this respectfully and fully aware of the enormous resources required to make a quality video.
I disagree. My therapist and I mutually agreed on a diagnosis for me so he could bill my insurance provider. I put so little concern into the label, I actually can’t remember whether we decided on depression or adjustment disorder. In any rate, the label was useful for billing and I would do it again in a heartbeat. The label didn’t affect how my friends and family members treated me, nor did it come up in any subsequent job interviews.
I gained from reading this that the problem of biased research is not relegated simply to drug research. Biased research is evident in other areas of medicine, including ‘natural’ medicine. In other words, just because some promising new therapy is ‘natural’ or ‘non-harmful’ doesn’t mean that it is effective or that the evidence behind it isn’t biased or cherry picked. I think self empowerment is the number one healer of people. The mind/body connection is huge and to harness the power of the mind to heal, one needs to believe that one can heal. One needs to have hope. The enemy of hope is often found within institutions that promote the disease model.
Thanks Steve for voicing what I have always suspected about SSRI’s, how they work for some, but for others, they seem to dismantle empathy and concern for oneself. I think human beings are ‘hardwired’ to feel empathy. It makes sense for the survival of the tribe for members to have a sense of connection. It (empathy) fosters teamwork and cooperation and interdependence is arguably one of the keys to survival of our species.Who knows? For individuals who experience abuse or neglect at an early developmental stage, or others who feel alienated and marginalized, decades of social conditioning and logic can take the place of natural empathy but what if these social inhibitions are removed? I just don’t think the manufacturer’s of SSRI have a clue at the kind of Russian roullette they are playing with our loved ones. I also agree with the second poster, ‘B’ that it is quite normal to have violent or hostile fantasies but in this fear based environment, it is becoming increasingly risky to reveal violent or hostile fantasies to a therapist. The thought police are watching and listening. Anyone who has been the victim of an overly aggressive mental health worker making assumptions about an individual’s frame of mind or anyone has experienced the system on a typically bad day, knows that it is rarely safe to express what one is really feeling and it is very risky to seek ‘help’.
Bob, Thanks for this piece. I liked how you laid out the challenges. I think one of the toughest parts of this plan will be to prevent the state from redistributing the savings of a more humane and effective mental health system. And the savings may not be easy to calculate in the first place. For instance, how does one calculate the ‘future’ savings of an effective early intervention program like Soteria?
In a perfect world, the monies saved by catching individuals before they become chronically institutionalized and ‘helpless’ for life would be redistributed to help those who have been in the system for a long time. Many resources have to allocated on continuing to help individuals who have been chronically harmed through over medication and institutionalization.
The other challenge not alluded to in this plan is the resistance of family members who are very strident and vocally opposed to change. Family members are terrified that their family member may have a crisis. Many were on hand to witness horrific experiences when a loved one tried to unsuccessfully taper off one or more medications. Many family members are suffering from secondary trauma that has not been dealt with for years and years. Their trauma has been cemented over with years of indoctrination and ‘peer support’ from pseudo consumer organizations. When an individual has a crisis, the entire family has a crisis but the mythology that is used to provide consolation for the families in crisis only reinforces the disease model which creates a circular trap for the entire family.
It is also painful for family members to acknowledge the horrific long term side effects of over medication. Many loved ones who suffer from cognitive and physical impairment from long term neuroleptics use may get little to no family support, let alone from the system for the effects of their poisoning. There may be a population of individuals that can never be safely weaned off high doses of multiple medications due to structural changes to the brain. Most of this hasn’t been researched. This plan should call for more research into this area.
Regardless of what the research tells us (if massive, voluntary withdrawal studies ever get funded) people deserve social inclusion and every sanctuary that society can offer, especially if they are victims of psychiatric harm and abuse.
Thank you Susan. It was an honor to meet you at the ISPS conference and I look forward to consulting with you in the near future about the possibility of founding a Soteria Oregon and a Soteria Washington! I know that the Soteria Alaska experienced challenges not experienced by the original Soteria yet, as a community you met these challenges head on with amazing dedication and skill! Thank you everyone in the Soteria Alaska community! You are like a brave candle in the dark.
This is a good article. Thank you for writing it. I have one problem. You state,
“What I would like to see is for all of us who care about these issues to cultivate spaces that can accommodate the complexity, uncertainty and humility that will be required of us in creating communities that neither promote shame and fear of these difficulties, nor deny how difficult it can be to effectively and compassionately respond.
Cultivating a space like this will require moving beyond polarizing rhetoric, and engaging with the messiness and grey areas that can more credibly contain these issues.”
It is not communities like MIA with its voices of survivors and consumers who are polarizing. It is big Pharma that is polarizing with their dumbed down ‘paid’ voices.
Do you know how difficult it is to create spaces that move beyond rhetoric when big Pharma pays salaries to individuals whose sole function is to troll the internet and post thousands of dumbed down comments on popular blogs and news dailies? They actually pay people to fake a ‘lived experience’ so they have the street credibility to defend the attributes of medications. If you don’t believe this, you are incredibly naive.
Big Pharma also pays people with ‘lived experience’ to start blogs, write books, and infer that medications ‘saved them’. Do you know how difficult it is create spaces for the dialogues which you are promoting given the incredibly corruptive influences of an industry that has more marketing might behind it than the military, alcohol and tobacco industries combined?
Big Pharma exploits consumers and family members and uses their stories selectively to promote the status quo. Those of us who are not paid to speak about our experiences, those of us who are critical of psychiatry are usually silenced by default, we are too busy battling social exile and poverty to build an audience for our stories. In this background, how are we supposed to create the balanced dialogue you are promoting? From the point of view of the media, we are like David and big Pharm is like Goliath.
Beautiful essay Suzanne. Well done!
Hi Ted! I viewed the video and became aware of the efforts to discredit you publicly for your leadership/involvement at the Berkley project. Thank you for continuing to courageously speak out and be a leader to this day! You are making a big difference!
For me the most exciting part of the conference was the strong showing of VHN folks from all over the world. I especially enjoyed meeting vh’ers from CT. I also benefitted from Mary Olsen’s workshop on open dialogue. Having my husband participate was a dream. I took away a lot of hope from our family.
Why do people automatically start talking about the deceased in past tense? Doesn’t it make sense to use present tense when referring to a loved one who is deceased especially when a death is recent? It seems to me that such a convention would be much kinder to those experiencing grief.
Travailler-vous: Thank you for revisiting this post. I like how you express your ideas and I appreciate the recommendation of the book (which I was reminded of when I re-read your original post to put your second post in context) Are you bi-lingual by any chance? It would be nice to keep in touch. You can email me at [email protected]
Thank you from the bottom of my heart for not only exposing psychiatric shams but for bringing attention to the tiny candles such as the San Jose Mercury News, which I guess is proof that journalism isn’t dead yet. With corporations consolidating and owning all of the media, story telling can be very important for personal survival. This site is a fire that people like me can circle around, listen, and learn. I am grateful for your conviction.
Thank you for sharing this. Your personal observations and your strong conviction reinforces my desire to view our daughter’s ‘mental illness’ through the lens of our family’s heritage and the courage to pursue healing at least in part through an understanding of what our ancestors experienced. Not sure who we will meet and what resources and provisions are required for this journey our family is on, but I have faith that we will meet the right teachers when we are ready. And maybe when our family experiences a profound healing (as defined by understanding and widsom) we will have something to give back to this community.
Carina: Sounds like a wonderful project! Perhaps others could replicate or organize a similar event in their communities. I belong to a group (Rethinking Psychiatry) that has hosted a similar film festival for several consecutive years in the Portland (Oregon) area with great success.
We encountered a few problems. Not calculating the cost of ‘burn out’ among our all volunteer crew, we broke even at the door (that is the good part) but since we lost our donated space at the UU church, our overhead is now much higher. Unless we can find a new property owner who will donate or give us a space at a substantially discounted rate, we will always be asking volunteer organizers to personally assume the financial risk of fronting the money for the festival.
For this reason, I’m not sure when we will be able to offer another film festival in Portland (at least in the near future) but I would like to see a similar film festival in the Eugene area (120 miles away) where I live, in partnership with the local University and other non profit organizations. MFI and the local Opal Network have hosted movie night, but to my knowledge there has never been a full blown mad film festival in Eugene.
I know there is a built in audience for this type of thing but these events typically require a lot of legwork to organize and promote. Many people are not willing to make cold calls, design the webpage and registration page, create the financial controls, engage in process (create a transparent decision making process for selecting the program) and attend the inevitable planning meetings to make all of it happen.
Does anyone know of any international cultural organizations that would provide seed money to hire paid staff to organize a mad film festival in multiple cities throughout the world simultaneously? Is anyone interested in forming an international film festival organization that could either ‘go on the road’ or take place in several cities throughout the world simultaneously?
Also, when I clicked on the first link in your article to learn more about your film festival, the link appears to be broken. Any chance you could post the link again? If not, could you please send a link to me personally? My email is [email protected]. Thanks!
Steve, I’m convinced that this is already happening. When folks like my daughter are forcibly given Invega ‘depot’ shots, in theory, there is a time release mechanism at play so their bloodstreams are receiving a steady and controlled dose. But I’m convinced that individuals often get irregular influxes of the medication streaming in their bloodstream, perhaps because every person’s metabolism is different; I’ve seen the mania and akathesia that results when they receive a higher than intended dose in a short period. It is not pretty, especially when parents are too shocked to know this behavior for what it is when it happens and doctors are too arrogant to admit iatrogenic harm. Many of us parents think Invega was invented by the Devil.
So, we start treating children whose brains are developing more slowly with medications that stunt their physical growth?
Wordtrix: If you represent an organization that promotes involuntary drugging, please declare your affiliation. Even though you didn’t suggest that your experience is universal, you used the following inflammatory words, ‘all you anti-medication people.’ As the parent of someone who is forcibly drugged, I think I speak for the majority of us consumers, survivors, family members, and clinicians who engage in this site that nearly everyone is pro choice! If you want to voluntarily take your meds, go for it! But to force someone else? No way!
If you are sincere, I honor your desire to remain on five medications and I hope that they don’t damage your physically in the long run. I must admit though that I am saddened that you feel you need chemical restraints to keep you from being violent. Did you ever consider that the violent tendencies you feel could be related to the side effects of a too abrupt withdrawal?
Unfortunately, withdrawing from toxic neuroleptics is fraught with danger and risk. Until recently, there has been nearly zero interest in studying the relationship between violent aggressive behavior, withdrawal from psychiatric medication, and structural brain changes due to long term psychiatric drugging (such as the formation of extra D2 dopamine receptors in the brains of people who have been put on neuroleptics) Much of what we know is through the sharing of experiences and the internet has been invaluable. Our adult daughter experiences akathesia when attempting to withdraw too quickly from years of involuntary drugging: a cocktail of anti psychotics and mood stabilizers. Since the heavy drugging takes away some of her executive functioning and cognition, her withdrawal attempts have been rash and spontaneous; her ability to read and comprehend informed consent forms, conduct internet research, and deeply reflect on things before taking action, is itself hampered by the drugs. Sometimes, even doctors who should no better take their patients off one or more psychiatric medications too quickly. If I didn’t know better, I would guess that sometimes they want their patients to fail off their meds, if only to reinforce their paradigm of treatment. Most doctors are still holding out for technological improvements in the field of molecular medicine and are loathe to call the last fifty years an utter failure.
Sometimes the symptoms of akathesia include restless, incessant movement and or talking, sometimes angry verbal rambles. Often, caregivers without training or who are not properly grounded can escalate the situation and get spooked into calling the police. It takes specialized training to help people safely titrate off harmful medications. They do create dependency and their is a point in the withdrawal phase that is worse than getting off of morphine or heroine but the big difference is that people withdrawing from street drugs can often go into treatment centers that are covered by insurance. Ironically, family members trying to help a loved one wean safely off psychiatric drugs have nearly noone to turn to, just each other.
Chrisreed: Great metaphor on hogging the life boats. Great insights. Thank you for sharing. Per the conversation with the gay uncle and his partner…..I too, have experienced the great disappointment of discovering how people whose historical marginalization in our society–people who I would consider natural allies– can’ seem to run fast enough in distancing themselves from my daughter’s experience of psychiatric harm and abuse. Lack of solidarity among those whose lives are impacted by the deep failures of the mental health system is deeply saddening to me.
Talk about divide and conquer. This is exactly the kind of thinking that keeps us from achieving unity and therefore, effective, politically.
May the days when we stop traffic over these issues be not far off. To lay the groundwork for that day, I think David Oaks has the right approach. Emphasize Creative Maladjustment. Build coalitions with the environmental justice movement. Global warming doesn’t resonate with me although I know its important. Eradicating pesticides/GMO’s resonates with me. Toxic poisoning of our children is happening in more ways than one. Getting our people united under a wider banner is essential.
Sa is right. We need a network of families for mutual support but we also need land and housing that is accessible. There is a disparity of wealth and privilege among survivors and their families. Open Family Dialogue is not available in most communities and we do not yet have a Soteria. The zoning laws are very favorable in the communities we are targeting for land acquisition and there is a wealth of information from within the tiny house movement. Activist/leader/mother Cindy Fisher is leading a ‘Beyond Soteria’ project in the Portland, OR/Vancouver, WA area for low income people who have been entangled in the mental health system and the corrections system for years and years and who are seeking alternatives to medications. Soteria was designed for individuals experiencing their first break. Returning people to full functionality who have been on neuroleptics for years, if not decades made not be possible. The goals/outcomes and expectations may have to be lowered while keeping hope alive for the greatest possible outcomes (miracles do happen) and the dignity and autonomy of each individual must be regarded as sacrosanct.
Cindy has been following spirit to find community based partners who are willing to be trained on non violent deescalation who are willing to volunteer and or live in the community for reduced rent. She has made some inroads with the Occupy folks and the Non Violent Communications and PeaceMakers movements.
I look forward to reading your book.
My 24 year old daughter, not God, has been my teacher ever since her first ‘break’ five years ago. The lesson has been how to remain hopeful in the face of powerlessness.
I continue to be humbled by her ability to keep hope alive. Her psychiatric incarceration and institutionalization, the forced drugging, the restraints, the isolation, labeling, all of it is a type of crucifixion. Every day, she must perform mental and emotional gymnastics to be kind and ‘appropriate’. Every six months, while attempting to be true to her soul, she must verbally defend herself to psychiatric authorities who lay traps so they can justify the appropriateness of taking away her freedom. The meds make her sleepy, emotionally, flat, disassociated, lacking in desire, cause her hair to turn grey and fall out, and obstruct her bowels. She is injected monthly. She has given up trying to resist, as she once did years ago. But she has run away several times to ‘remember’ what it was like to live in the hope of freedom. We called the last AWOL a ‘holiday’. I thought it did her some good. Always she is caught and returned to the system. She is afraid to tell her psychiatrist about her side effects out of fear that more meds will be added to her cocktail. She doesn’t do well in therapy. Once she complained of being sad and they offered an SSRI. Once she complained about not being able to concentrate and they offered Riteral. Every time she runs away she is put on higher doses of anti-psychotic ‘medicine’. These things that are marketed as ‘anti psychotics’ are horribly misnamed. They aren’t addressing the root cause of her psychosis. They just make her worse. Her brain is impaired by them. We can only pray the damage to her brain by the ‘treatment’ isn’t permanent. Once day, we hope to get her to a sanctuary where she will have the option of safely titrating off them or at least be on a very low dose. She doesn’t believe anything she says will be taken seriously. Taking contrary positions to the medical authority is used as proof of her disease and lack of insight and justification for her continued commitment. I think our family would get better care for our daughter in a foreign country. We have discussed selling everything to move far away. My father, husband, and son are Veterans. They took an oath to protect our constitution. Our constitution doesn’t apply to people with psychiatric labels. Our society is very sick.
GBY. This is beautifully written. You are on a short list of caring, creative and accessible leaders who continue to inspire me and make me want to keep up the good fight.
Thank you for responding to B. in such a thoughtful way. You raise really good points and I don’t envy the position of professionals who are trying to balance the rights of multiple individuals in complex situations. You bring a valuable voice to the debate on whether psychiatry, as it exists today is medical science, a healing art, or a form social control (or a mixture of all three) let alone what psychiatry should or could be.
Your response goes a long way towards healing the anger I feel against psychiatry for harming my daughter. I may never 100% trust all doctors again, as I once did, but it feels really good to hear a psychiatrist who is willing to talk this way, including to people like me who identify with having a loved one who being harmed by psychiatry. She is locked up and has zero options to titrate off or change her medications.
I am very grateful for your donating your time to the Foundation for Excellence and for explaining your views in this community.
I only wish there were more psychiatrists like you in the system!
Having a family member residing for several con-consecutive years in the institution you refer to, I agree with most everything you say and I believe that staff members do retaliate against patients who are rebellious, most notoriously by ‘upping the meds’ and adding stigmatizing new labels such as ‘personality disorders’ to a patient’s long list of diagnoses. I believe that sometimes patients are set up for failure in both in-patient and out-patient settings providing an unconscious type of “I told you so” retaliation when doctors are not rewarded with gratitude and adulation from the their most rebellious and antagonistic patients. Doctors who run the gamut when they exhaust their single page prescribing algorithm without success often blame the patient and this too, can be expressed in a type of retaliation such as by cutting them from the caseload.
If you believe, as I do, that meds are used primarily as chemical restraints for the benefit of the caregivers and to foster the smooth operations of an overly large institution, then yes, definitely there is much to be bitter about.
If our mental health system was imbued with values of empowerment and self determination and if psychiatrists were willing to accept that empowering their patients is by far, a more effective prescription, than dopamine binding agents which flatten the emotions and kill desire, then patients who exhibit a healthy desire to run away should be rewarded and reinforced! Every time my daughter ran away from an institution the system’s answer was to rehospitalize her and inject her with higher and higher doses of neuroleptics. Although any normal parent teaches her child that it is completely appropriate to run away from abuse, when one encounters it in the hospital or a foster home, when one is civilly committed, running away is not only not an option, it is viewed as ‘proof’ of illness! I have never witnessed anything as insane, crushing to the human spirit, and as antithetical to healing.
As you know, the experience of torture and abuse does nothing to adequately prepare patients to live fully and independently in the community. I hold that patients who are restrained, isolated, and forcibly medicated are being tortured. Even the United Nations has gone on record saying this constitutes abuse. Once discharged from a facility that routinely engages in psychiatric abuse or is coercive, an individual will always be looking over his\her back and it will take years, if not decades to overcome the trauma of being locked up and restricted, while living in fear of abuse.
As you know from experience, conformity is critical to the smooth running of a secure psychiatric facility, particularly large state hospitals like OSH, which cannot or will not cater to individual needs, even if those needs are rooted in an individuals cultural, ethnic, or religious background. Patient centered care in a large institution is a joke. Once you are in the system, you are prodded through a pipeline like cattle moving down a chute. You have very few, if any choices.
The argument goes something like, if you bend the rules once, such as security rules or visiting policies to meet an individuals needs, soon there will be chaos. After all, if one individual seeks and receives special attention or accommodations, even if it fosters his/her mental and emotional growth, everyone would want the same accommodations. There is a cheaper by the dozen mentality in asylums, after all. And then there is this confounded fear of patients going AWOL and maybe what, do axe murders, while they are on the lam?
On occasion, a staff member will use discretion (often off the radar) and bend the rules to assuage the mental agony that most patients experience by being locked up and having no comforts of home or community; but most employees are not secure enough as individuals to exercise such discretion or they lack the training that would give them confidence they need to trust their own intuition on when it is appropriate and safe for a patient’s well being to bend the rules.
Many of the nonsensical rules in mental institutions should only apply to axe murderers, not patients who are recovering from emotional and mental distress, especially if they are recovering from emotional abuse from controlling family members, which makes these controlling rules even more nonsensical.
Aside from the higher authorities, the harmful actions of staff are usually not so much characterized by cruelty as by toadiness and fear, starting with the fear of losing their livelihood. The fastidiousness by which some staff members conform to nonsensical rules and policies should possibly qualify for a new mental health disorder in the DSM VI: “Obsessive fear of losing a lousy job” Still, I am in no position to judge, as I too, as a worker, have been in numerous situations where I acted on a strong compulsion to seek personal gain or favor in over fulfilling the mission of my organization.
While I tell myself that many could lose their jobs for breaking the rules on behalf of a patient even when the rule is ludicrous and I try to put myself in the shoes of the person whose control and authority is the most limited. I try not to forget that the pay grade for an entry level employee at a state mental hospital is actually not far above the aggregate value of a montly SSDI, food stamps, subsidized housing, etc. Sometimes there is a sliver of difference. Shouldn’t this give us some basis for widening our coalition based on economic justice? After all, I’m sure that more than a few state employees sloshing and mopping the floors of Oregon State Hospital came to resent patients who threw garbage on the floor, then used their diagnosis as an absolution from all personal responsibility.
That having been said, I hope ex patients are willing to expose some of the common practices of these large state hospitals that still operate today such as Oregon State Hospital, so folks advocating for a return to the ‘good old days’ of the asylums will get a much needed reality check; if nothing else, people writing about their experiences may help many of us resolve the anger that we feel about our loved one’s extended commitments there and expose the hypocrisy of our caring mental health system to the ignorant public.
I also want to point out that some individuals who work at OSH stand out for their kindness and humanity. One staff member while rounding up patients to go on a field trip exclaimed loudly in my hearing “I can’t imagine how it awful it must be to be civilly committed and forced to come here!” Another time, Will Hall was invited to speak to my daughter at OSH. This is hopeful! For every unkind or careless word I overhead a staff member make, I probably heard two that were kind and empathetic. Yes, they may have been whispers in private, but they give such great comfort like little candles in the dark!
But even kind words can be a double edged sword when you are a patient or a family member. Thanks to NAMI and its infamous ‘anti-stigma’ campaign, families are inundated with kindness but starved of meaningful support and opportunities for self empowerment. Kindness can be suffocating and patronizing, even diminishing, whereas actions and words that lead to true independent are far and few between.
Finally, although I agree with much of what you say and how you say it, I take issue with the wording of this statement: “When a client/patient cannot leave, this requires them to take extordinary measures after years of fuck ups and incidents that cannot get better in such a situation, including even killing of patients out of retaliation and super high doses of drugs to incapacitate and maim”
First, I will state why I sympathize with your statement. Then I will describe what I don’t like about it. When I took my daughter to the ER for ‘help’ during her first break, I personally witnessed how being forcibly drugged caused her to react violently by punching a nurse, even though she had no history of violence EVER. The greatest irony was that she was immediately charged with assault by the attending physician. Considering she was a victim of psychiatric assault and the first ‘blow’ was issued by hospital staff when they wrestled her to the ground when she tried to escape from the ‘isolation’ room, a stark room that is no more than a jail cell, and when they used goons to put her in five point restraints in order to inject her with a big needle, an experience from which she has yet to recover, without even ascertaining, first if he had a history of sexual assault, it is extremely ironic that she ends up with the criminal record, not the hospital staff. This was the first harsh lesson of anyone caught in the psychiatric system. NEVER EVER ask for any help from the system when you are having a crisis unless you are OK with having all of your rights taken away. Do NOT retaliate with violence even if someone in the system treats you with violence. Once you have the label schizophrenia, your story is not going to be believed so NEVER EXPECT JUSTICE if you experience abuse or harm in the system.
You and I probably can agree on that. But beware of inferring doctors of “killing” people out of retaliation. They will think you are crazy. It’s true that people have been killed by being put on psych meds that made them do dangerous or violent things; its true that elderly patients who are put on anti psychotics experience twice as many cardiac arrests; it’s true that many doctors put their patient on anti neuroleptic cocktails, then fail to recognize the contraindications until the patient is dead; its’ true that some doctors do not even acknowledge that psych meds cause metabolic disorders that lead to early death. But describing these actions as intentional is a slippery slope. Best not use any language that cannot hold up in a court of law. It does not promote our agenda in any way.
We should not use words like ‘killing’ because it infers murderous and criminal intent, which is highly unlikely and difficult to prove. I have witnessed psychiatrists act like petty lords in a fiefdom, rather than collaborative and curious human beings, but all of us can act this way at times. The question then becomes, when a person who is in a place of power and authority acts out of pettiness or dislikes a patient, does it cloud his/her judgement while making decisions that affect the person who is subject to that person’s control? The answer is unequivocally YES but when this happens, righting the injustice may be impossible. To date, most people who were harmed psychologically, mentally, emotionally, physically, legally or financially by a doctor have never received any compensation or apology. Most will never see justice. I think our movement needs to accept this and move on.
The casino is rigged and the best we can do sometime is to restore our dignity, refuse to play, and go on with our lives. I like the plantation metaphor. If a slave escapes to the North, one may live out the rest of one’s life as a free person in the North. But if one has a noble calling, one may risk one’s personal freedom, as some do, to help others travel through the Underground Railroad. This metaphor works for me because it captures the very real dangers of helping others migrate out of the psychiatric system when they are in a very fragile and even dangerously unstable place. People like Will Hall and Dr. Cornwall do this in their work and probably hundreds, if not thousands of others. Some family members like Cindy Fisher do this work for a loved one. But this metaphor has its limitations because individuals in the mental health system are enslaved by forces that are much more complex and numerous than an army of evil doctors or abusive family members.
Some people are under the control of abusive family members or a cult. Some people are haunted by their past. Some, like me, lack imagination for what our lives could be or if we are blessed with a imagination, we allow our dreams to be crushed too easily by others. We often are enslaved by a negative self image and a victim mentality. Though its true that low estimation of ourselves is reinforced by the cruel and inhumane treatment we or a loved one received in the mental health system, in the end, if we allow trauma and abuse to write our life story for us, rather than find a way to rewrite the narrative of our lives, then we ourselves are the ultimate slave masters.
If our imagination is capable of creating great things for ourselves and our loved ones, it is also capable of imagining very dismal futures for ourselves based on our negative experiences in the mental health system. Doctors are capable of creating very negative conditions for us and our loved ones, occasionally out of a low need to outlet their anger and resentment and I think its sometimes it is fair to call this ‘retaliation’ but from my experience, doctors who harm, usually do so more out ignorance, not out of intent to harm which means the harm is usually not a fatal form of harm and is one we can recover from. It’s as if many doctors are in a spell that they cannot make up from and until they do, they can usually offer us very little meaningful assistance other than a pill to numb us or our loved ones. If we can put our lives back together, we are twice blessed if we have the courage to go back to the doctors whose treatment was a miserable sham and off them our recovery as proof of our resiliency and their ridiculousness.
Until they stop viewing we and our loved ones as people with ‘diseases’ until they are out of this collective spell. I think that the most fatal harm that happens to us is the harm we do to ourselves.
I appreciate your sharing how your identity changed during your journey and the experience of being ‘shunned’. I think every individual in this community, at one time or another has experienced a ‘shunning’. If you are a dissident mental health provider, you may be shunned by consumer groups, psychiatric survivors, and other professionals, sometimes all three. Often, when we are shunned for no more than using language that triggers another individual. For instance, if you are a provider or a family member, using the nomenclature of ‘mental illness’ may trigger rage from a survivor who does not identify with a label that he/she was given erroneously or during a time when they were robbed of their rights.
If you are a consumer or family member and you use the term ’empowerment’ and ‘human rights’ you may trigger the rage of a psychiatrist who is awash with bureaucratic paperwork and may wrongfully blame civil rights activists for making their job more difficult.
It seems at every turn one is searching for a safe community where one can speak one’s truth but there is a huge divide on what constitutes fixing the ‘broken’ mental health system. Within this divide are individuals who have been so diabled by the system itself, that no-one can presume to speak for them in this community (even though people on both sides of the spectrum do so constantly)
Everyone in this community has a dog in this fight to peacefully revolutionize mental health care in the US. In the wider picture, our struggle is a part of a larger struggle to save our planet from destruction and to create justice and equality. But our movement is not united and we don’t have a broader coalition yet to be effective and shift the poles of the debate. Realizing this, we are trying to attend to these challenges.
One thing that keeps us from being united is the disparity of privilege and the range of physical and mental abilities of consumers. Some consumers have been so denied of their rights they cannot even access the internet to join this community. Some have been so cognitively harmed from long term neuroleptic use that they cannot use a computer keyboard. Some are blind or have had their limbs surgically removed due to diabetes and must get around in a wheelchair. Some consumers have family members who limit their exposure to outside information unless it has been filtered by NAMI. I imagine, some even have Stockholm syndrome.
The other great divider is privilege. Our community is characterized by poverty, unemployment, and homelessness. We can’t expect to enjoy unity when some of us live comfortably in houses with heat and internet access. Some have had to make terrible choices to comply with a coersive mental health system to receive subsidized housing.
I propose that a person in subsidized housing who risks ‘biting the hand that feeds’ by being openly critical of community mental health care system in his/her community and who does more than vote on pizza and attend Alternatives is taking the same risk as the psychiatrist who speaks out in his/her community about the lack of choices and human rights in the mental health system and risks the ire of his/her peers.
Some members of this community literally profit from the current system and enjoy the American Dream. The current system has harmed many. Those who have been harmed the most live in poverty. This is a divide. How can one whose poverty is arguably caused by iatrogenic harm speak calmly with one who profits from the system?
Though some have courageously risked their professional careers to speak out with the hopes of changing the system are being shunned so they are risk of burning out or losing their insider status. In which case, the movement loses another potential ally.
Some psychiatric survivors enjoy more economic privilege and social capital (friends, networks, etc.) than those who are still struggling with issues such as poverty and homelessness that they arguably wouldn’t be experiencing had they received more humane and effective treatment to begin with.
There is also an element of luck and unfairness in the current system which is a crazy patchwork system of uneven care and opportunities. Some people have access to peer counseling and housing and enjoy favorable public health policies because their community has one or more dynamic peer leaders. Some even get lucky enough to have a Sotoria experience. Yet others get killed by their medication or they get locked up in prison permanently.
Some psychiatric survivors get a shot at the ‘American Dream’ while others, permanently disabled by tardive dyskenesia, from years of being drugged, live in foster homes where every decision is taken away from them, except how to spend $30/week. They may walk with a funny gait and people may avoid them on the street. Many experience the ultimate shunning.
Family members advocating for a loved one, want to shout out “I don’t want my loved one to end up rocking back and forth!” to the treating psychiatrist but they dare not out of fear that their words will be misconstrued as delusional (the medical notes will read: parent lacks insight and remains in denial about daughter’s condition) Plus, the words will be portrayed as lacking in compassion for those who do rock back and forth. “Look how that activist or family member talks disparagingly about these poor people with diseases who are fortunate to have our care and support” If one accuses the psychiatrist who is treating one’s loved one of harming the other patients on the ward, they have terrible ways of retaliating against one’s loved one and the most terrible thing of all, most doctor ;retaliate’ are completely unconscious of their terrible abuse of power and authority. It is as if they are in a dream, a stupor or a spell.
I am speaking as a family member but I am also emboldened to channel my 24 year old daughter if she were to visit this site. When one visits this community after spending days, months, even years in the back ward, one may obtain a bitter consolation. So many individuals in this community who successfully made it out of the system. Yes, this can provide hope. But one may be left to wonder, do the contributors in this community have more than words to assuage my isolation and suffering? I just want a sanctuary where I won’t have my experiences discounted and pathologized. I want housing but I want freedom of choice, not doors that lock. I want dignity and respect and treatment that doesn’t harm me or make me cry in my pillow at night. I want an end to this nightmare of institutionalization and civil commitment. I just want an end to anger and hate against this f**cked up system.
I agree that we need support groups for professionals. But it would be wise for professionals who are concerned about being shunned by their peers to remember the level of shunning that they endure is a fraction of what our loved ones endure on the streets.
Individuals like my daughter who occupy the lowest rungs in our society because they are labeled ‘psychotic’ or because they hear voices, are shunned in a way a doctor or psychologist will ever experience.
And to add insult to injury, there is an even lower rung reserved for people like my daughter who are ‘non compliant’ or who ‘lack insight’. They are civilly committed over and over and over again until they have adopted the code of conduct imposed on them by the mental health system to live half asleep, with no motivation, no desire, no ability to feel emotion, no dreams. As long as they take the medication that makes them sleep 12-16 hours daily, they will be accepted.
Welcome! This story begs a sequel! Keep up the good fight on every level. You are much needed.
I too, have experienced a long period of fear; In my twenties, when I was arguably at my intellectual and physical peak, when I should have been contemplating with excitement all that life had to offer, instead, partly due to the work of Dr. Caldicott and the Union of Concerned Scientists, I internalized a fear of nuclear Armgageddon that was so overwhelming at times, it diminished my ability to form strong emotional connections with people and make basic plans for the future. Thankfully, I sought alternatives over conventional psychiatric help and with the help of friends and family, I was able to overcome the paralyzing effects of fear and depression.
Ironically, my greatest anecdote to fear and anxiety turned out to be engaging in democratic due process (!!) by organizing; ultimately leading to committing civil disobedience. Oddly enough, being incarcerated on numerous occasions had the strange effect of making me feel empowered; it also opened my eyes up to the despicable and racist conditions inside our corrections/prison system; with each passing year I say I’m going to do some organizing work around prisons but I always get sidetracked. Today, the psychiatric survivor movement needs to have a major dialogue with the prison justice folks because these well intended folks who have their roots in the Catholic based movement to end capital punishment who are uniting with mandatory sentencing reformers and ACLU advocates are actually charging jails and prisons with not providing enough psychiatric care to inmates! We have to get the word out to these well intended reformers and Catholic nuns that female prisoners who are dealing every day with racism,violence, addiction, poverty, illiteracy, domestic abuse, lingering effects of child sexual abuse and neglect, etc. are increasingly being pathologized, diagnosed, and medicated. The woman’s prison population is becoming increasingly obsese; prison food is atrocious in quality, there is zero access to nature, and massive quantities of psych drugs being shelled out at these facilities for bogus ‘diseases’ so PLEASE if you are a prison reformer, please don’t go on about how women in prison need more access to mental health care because we all know what more access to mental health care means: it means more pills. When female prisoners are discharged, they are usually lacking in medical insurance and they must spend their first several months going through cold turkey withdrawal from the psych meds that they received in lavish amounts while incarcerated. This makes them even more at risk of relapsing on street drugs, because the debiliating effects of coming quickly off Zyprexa, Abilify, Seroquel, can be partly assuaged by a number of street drugs.
Sorry I sidetracked. We are all looking for a way to overcome fear. Fear is really the great equalizer. When doctors see the harm of the system under which they are working under, they fear to lose their livelihood, but on a spiritual level, some fear losing their integrity or ‘soul’ even more. So we make choices. You have made a choice to be openly critical of your profession knowing there may be professional consequences.
But your choice to face your fear head on has the ironic affect of making me less fearful since one of my greatest fears today is for one of my children to become permanently harmed by psychiatry.
When I contemplate how easy it is in our society for people experiencing distress to become labeled and become victims of iatrogenic harm, I feel the world is a very unsafe place for ‘maladjusted’ types like me. But when I see evidence that people who belong to a profession (or guild) that has harmed many people are capable of having a change of heart, it gives me hope and diminishes my fear. For that, you have my gratitude.
Alex: the Film sounds awesome! Can’t wait to view it. I couldn’t agree with you more that NAMI is exploiting the stigma issue to make money with the end result that they actually perpetuate stigma and discrimination, especially the stigma against those who are non compliant; but I know good people who are active in NAMI trying to change it from within. I salute them! I often think we don’t give insiders like individual NAMI members and doctors like Dr. Steingard enough credit for their valuable efforts. I think in the future that it will be easier for mainstream professionals to come out of the closet agains the practices and policies of their own profession or guild. We are standing on the shoulders of giants, the first generation of survivors to organize. People generally want to be on the right side of history and I think this will apply to a lot of people who don’t yet feel safe enough to engage in this dialogue openly out of fear of losing the respect of their peers. But in the future it will become safer to speak out, as the rising tide of evidence becomes generally accepted about the true nature of many psychiatric medications; that they are brain damaging, especially neuroleptics. Sadly, it will probably help out that big Pharma, will put their vast profits into other avenues of research other than mental illness.
I think we should be very respectful of those who have been deeply harmed. Their voices are important.
but so are the voices of professionals who are trying to change things from within, including those in NAMI. One’s livelihood is a terrible thing to risk; Doctors too have families to feed, clothe, etc. and they too, have been duped by the Universities where they received their credentials. I know this statement alone is liable to anger some. Perhaps we could have town meetings to allow reconciliation to occur as Nelson Mandela did after apartheid ended.
I think it would be wise to create more safe communities for dissident psychiatrists to come out of the closet and avoid using a rare forum like this one, as a reconciliation platform. Sadly, there may never be any opportunities for individuals and family members to enjoy full compensation and spiritual reconciliation. Many are already in grave sites, many of them unmarked. Somehow, we must all move forward together in this f**cked up nightmare of a mental health system and move this mountain of ignorance and indifference together but we need a diversity of voices including those who are justifiably very angry about the torture and abuse they endured as well as mainstream voices. Unity is not going to be easy but it could make or break how effective we are
I think you hit the nail on the head when you wrote: “it’s somewhat tragically ironic, because if they are the ones carrying the social ills predominantly, then they are also the ones with the solutions”
David Oaks expressed this same sentiment on several occasions, that people who express extreme emotional or mental distress, even to the point of being being disabled, are seeking recovery in great numbers through community and personal solutions as well as through personal empowerment and hard work. These recovered individuals are the ones who hold the key to the recovery of our entire society from man-made caused problems like global warming.
If you know someone who has recovered from a deep depression, an ‘anxiety disorder’ or even ‘psychosis’ ask them for advice the next time you feel frightened or disturbed! These individuals are the greatest mentors, teachers, and friends alive! Embrace them and support them in our community so they don’t have to waste their precious time and resources obtaining certificates and credentials to do their important work (not to undermine the accomplishments and importance of people who did obtain such credentials).
If a person is willing to share his/her recovery story in person, let alone to a large audience of peers, professionals, community of faith, etc. pass out flyers and posters and get out the word! Psychiatric survivors are made of a steel. They are OK with being creatively maladjusted and as such, they often harbor important information about saving our entire species from almost certain destruction. If we do not learn from psychiatric survivors, the best hope for our society to become more inter dependent and cooperative will go down the drain.
As Mr. Oaks said, ‘Normal behavior’ is killing the planet. Science confirms this. Pesticide use, heavy metals in our water and soil, air pollution, radiation leaking from outdated chemical weapons plants, wars and prisons, diminishing ocean fisheries and salmon runs, over-logging, desertification, overpopulation, economic pressures due to globalization and the break down of indigenous cultures, the role of extreme poverty and increased prison rates leading to the breakdown of traditional family units in Western society, just to name a few ‘REAL’ not imagined dangers. All of these man-made dangers are very disturbing. When people who are emotionally disturbed are completely misunderstood by mainstream psychiatrists and harmed by restraints, isolation, and use of toxic medications, its not just personal loss, to individual, it is a tragic loss that affects us all!
Those who recover from horrific psychiatric harm and abuse—their stories are being virtually ignored by mainstream mental health professionals and the media (I wonder why when those who often have the best personal outcomes generally have not so flattering things to say about those who practice the healing arts)
Increasingly, I believe that psychiatric survivors, consumers, and family members need to continue to fight to revolutionize the mental health system but we shouldn’t continue to do it within a bubble or a vacuum. We should widen our movement’s goals to include environmental and economic sanity and justice for all by showing up at the protest marches of people who are fighting the good fight under different banners. We should reframe the crime victim’s movement to include crimes agains survivors of psychiatric assault.
We should reframe the ‘anti-stigma’ campaign, taking away one of NAMI’s greatest talking points, reframing it to include the important stigma of those who were slandered, dehumanized, or diagnosed with a manufactured illness and forced to take toxic medications or ‘treatment’ that made them much much worse. We should address the stigma of being scapegoated as a danger to society when in reality, the most dangerous people of all live in the state department, the Pentagon, at the policy level, etc.
Great points! Thanks for posting. Your wrote:
“I think we want to question how safe our communities are, and I’m not just talking physical safety from violence, etc.–I’m talking about emotional safety. Even the most safe-seeming environments can, in reality, be oppressive, controlling, and emotionally tortuous.”
When psychiatrists make these judgements about a person’s ability to safely live on the outside, they often only listen to family members when the family members are extremely vocal and want their loved one committed. Sometimes, if a family member who seeks help for a loved one but is critical of the mental health system (and wants alternatives including ones that don’t yet exist) professionals will force the family members out of the equation and dialogue, making it easier to cover up iatrogenic harm. I’ve witnessed very loving family members who were active in the consumer survivor movement for change actually being accused of abuse just to quiet them up!
Either way, you end up with extreme triangulation, an issue that is effectively addressed by alternative model like Open Family Dialogue.
We live in a ‘sanist’ society and family members and professionals who purport to be compassionate are often not being honest about their own complicity in a society that is lacking in safety across the board on many levels. I believe what you are saying that the ‘insane’ are scapegoats in our society. They are!
Most doctors because of their caseload do not or cannot take the time to learn the dialect of their ‘insane’ patients. Abuse that took place on the ‘outside’ if often coded in the dialect of the ‘insane’ especially if they are caught in a double bind. They may be divided internally on how to convey information about their safety or lack of it on the ‘outside.’
The information is there but it can usually only be accessed by rare professionals who have a unique mixture of humanity, curiosity, empathy, and patience.
I once had a dialogue with a very agitated and confused individual on the street (most would say he was ‘psychotic state’ but I prefer ‘extreme state’ ) Very quickly by opening a dialogue I learned that his best friend had been killed in prison and he himself had been raped in a men’s. We hugged and parted ways that day and he stops by my place of business frequently ever since. I think he is making ground but he sleeps on the street which in some ways is a hostile, dangerous place but for individuals who have been forcibly committed, it’s actually safer from an emotional perspective to live on the streets. I’m convinced. The biggest danger on the streets is being picked up by the cops for nuisance crimes and being brought to the ER where they will refer to you with terms like ‘frequent flyer’ or ‘persistently seriously mentally ill’ or some label and drug you.
I completely agree with everything you said. My daughter’s ‘treatment’ has cost the taxpayers and our private insurance company close to 1 million dollars, in five years, not including her monthly disability checks of $1,200. For a fraction of this cost, she could have been directed to a program delaying her exposure to harmful neuroleptics during her first break, and received peer support, food stamps, a bus pass, supported housing, and college tuition. I am certain she would not have come off the hinges this way or have a criminal record but would now be a productive member of society. Instead, her confidence is crushed and the psychological harm of being recommitted and forcibly medicated again and again and again is beyond description
I’m glad you brought up the point of how Robert Whitaker was influenced by David Oaks. One of David Oak’s gifts to this movement is his ability to talk to people and make friends on both sides of this important debate. Many of us who have a loved one who has been/is beinbg harmed by psychiatry experience great difficulty communicating calmly and rationally with people who advocate for coercive practices such as AOT. If psychiatric survivors like David Oaks, were not willing to share their experiences, calmly and with great dignity, to mainstream individuals who ‘had no idea’ what it feels like to be medically raped, things would be even worse than they are currently.