Monday, December 11, 2017

Comments by madmom

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  • Dr. Wood,

    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.

  • 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

  • Dr. Burstow:

    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.

  • Dear Tina:
    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.
    https://dredf.org/2013/11/07/second-crpd-hearing-delayed/

    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?

  • 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

  • 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

  • Sylvain:

    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?

  • 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.

  • Dr. Stuyt:

    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?

  • 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.

  • 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

  • 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

  • Epthe:

    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.

  • 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.

  • Dr. McLaren,

    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
    particular guild.

    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.’

  • Lordy:

    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?

  • Stephen Gilbert:

    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 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’.

  • Mr. Mecouch:

    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. (-:

  • CatNight:

    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.

  • Robert:

    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.

  • Sera:

    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?

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

  • Thanks Michael:

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

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

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

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

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

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

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

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

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

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

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

  • Dr. Berezin:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

  • Eva

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

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

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

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

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

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

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

  • Hi Nana: I meant to respond to your comment but I ended up clicking on the wrong button and I believe i ‘reported’ your comment instead. My bad. I totally can relate to your fear. I am trying to help a loved one safely taper off a powerful antipsychotic medication and I too, can get scared because I don’t want my loved one to end up in the hospital or endure any withdrawal related suffering if it is avoidable. Without leaving this site, 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?

  • Erin321:

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

  • Dear David:

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

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

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

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

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