Survivors and Families Working Together For Change: A New Project 

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Iwas involuntarily committed to a psychiatric hospital and diagnosed with schizophrenia in 1966. I was confined there for seven months. My resistance to their treatments resulted in increasing doses of Thorazine and Stelazine.       

My family did not know what to do. They were led to believe that only a medical doctor could restore their mystifying, outrageous-acting son to his accustomed role within the family.

This was a too-familiar tragedy that my family, like so many other families, suffered alone without any genuine help in understanding the confusing events that were occurring. My mother visited me during those first weeks I was being kept in the hospital seclusion room, and I angrily lashed out at her. I could not understand why she was participating in my confinement. She could not see or grasp what the hospital was doing to me behind those hidden locked doors. In turn, I could not see the pain behind the mask she was using to hide her emotions from me as she tried to be calm and reassuring.

“Don’t upset him” were the instructions given to her. Did they not understand how upsetting it is to have your mother act calm and unconcerned when you are fearful of losing the essence of your being? Each of us in our respective traps was ignorant of any options. I saw only her unwillingness to respond to what I was demandingmy release. I angrily vented my frustrations at her. I am grateful that years later we were able to discuss and understand the parts we played as unwitting pawns in the already-written psychiatric hospital drama. 

Prior to being hospitalized, I had never heard of insulin coma treatments or electroconvulsive therapy. My introduction to the proposed insulin treatment was what my mother told me during one of her visits. Too cheerily, she said, “Good news, the doctors gave you a complete physical, blood tests, everything . . . You’re in perfect health.”

Suddenly hopeful, I held my breath and waited for her to tell me when I would be released.

“They’re going to give you a new treatment that will make you better, and when they finish, you’ll come home.”

A few things were not explained to my mother or me about this new treatmentfor example, what would 40 insulin-induced comas do to me? Like other families, mine was given a minimum of information. As for me, I was given no choice. Trying to imagine the opportunity to be put into 40 comas as good news makes me wonder how my loving and caring family could have been persuaded that such a procedure would be beneficial. What about the side effects, the potential brain damage, the memory loss and the risk of death? Was the insulin treatment described to them in the same glowing terms that once promoted the benefits of lobotomies?

More than 50 years later, families continue to be kept in the dark about what they can do to help a distressed family member. What I have learned during the many years of working on myself, and with struggling individuals and families, has convinced me that we can do much better. Some of the new approaches to family therapy have been promising, but still fall short in using the potential healing power of the families themselves. We need to recognize the diversity of families and the culturally based responses to challenging emotions and behavior. 

It is essential to challenge the myths of a one-size-fits-all medical model. Families who are abusive, loving, or anywhere in between those poles should not all be addressed in the same way that minimizes the possibilities of recovery, growth, and transformation. 

An alternate way forward for families 

To that end, I’ve been working to introduce a new family support and training program that will help connect people and offer information on alternative approaches so we can spread the word, far and wide, that the medical model isn’t the only way to heal, and can cause significant harm.  

How did so many families become convinced that only a pharmaceutical solution can be effective? For too long, the biochemical model has failed to fulfill its promises and has blocked the emergence and development of creative community-based services.

I have thought long and hard about how we can best prevent someone from becoming a chronic mental patient with a broken spirit, learned helplessness, and a lost opportunity to develop her or his innate potential. Does anyone really know the percentage of families who are abusive and the number who are loving and supportive of a troubled member? We all have lived in families of different constructions. Are there any perfect families? The late renowned British physician, Donald Winnicott, said the best that a mother can aspire to be is “the good enough mother.” The belief that helping to educate and promote a good enough family will have a powerful effect on decreasing the number of people who will become lifelong drugged mental patients.

First, let’s look at how a confluence of factors contributed to the emergence and dominance of the biochemical medical model promoted by The National Alliance on Mental Illness (NAMI). The organization was founded in 1979 in Madison, WI, by Harriet Shetler and Beverly Young, two women who both had sons diagnosed with schizophrenia. They were tired of being blamed for their son’s mental illness and unhappy with the available services. Speculation that the “schizophrenogenic mother” caused schizophrenia still lingered in some quarters but was being replaced by the biochemical model. Thus began the unholy partnership between Big Pharma, psychiatry, and NAMI.

Many families dealing with someone whose emotions and behavior are disturbing seek advice and help from NAMI, which advocates for more mental health services—and more mental health services, according to NAMI, basically means easier access to forced treatments, more hospital beds, and greater funding of research into the development of better drugs.  

The dominant paradigm for families has become the alliance’s Family-to-Family education program, a free eight-week course targeted toward family and friends of individuals with mental illness and providing education from a medical-model perspective. Developed by clinical psychologist Joyce Burland and originally offered as a twelve-week program, but updated to a shorter model in 2020, the courses are taught by a NAMI-trained family member of a person diagnosed with a psychiatric disorder. Family-to-Family is taught in 44 states and two provinces in Canada, and facilitators are required to teach material from the curriculum without alteration. Today, NAMI and their family program are usually the first places people go for help. What families receive is the one-size-fits-all medical model negating hope and the possibility of full recovery. 

When an individual in a family is experiencing distress or extreme emotional states, the family unit undergoes a parallel experience of confusion and disruption. Today families have little choice but to seek out mainstream health professionals in their search for explanations and help with the mysterious, out-of-character behavior of a family member. Typically, when consulting a medical professional, families are advised to accept a hopeless diagnosis that primarily attributes biological causes to the confounding behavior. Not being aware of viable alternatives, they are talked into believing that it is in the best interest of the now “identified patient” to be given over to the care of mental health professionals. 

Unfortunately, the recommended treatment protocols often guarantee the admission of their loved one into the role of chronic mental patient. Families then are advised to downgrade their expectations, to accept that they are dealing with a very serious mental disease that will require psychiatric drugs and recurring hospital confinement. They will not be informed that research studies have shown that drug-reliant psychiatric patients die 25 years sooner than the general population. Nor are families being informed of credible, replicated research demonstrating that large numbers of people, including those who have been diagnosed with schizophrenia, have recovered and positively transformed their experiences.

Our plan: flexible, open, supportive, and free

In our proposed program, families will be introduced to research that has identified themes and principles common to those who have recovered.

We have a small team of people with lived experience (survivors) and family members with their own experience who are intent on developing a family education and support group for familiesone that can challenge the hopelessness of the mainstream medical model of mental illness.

Those of us with lived experience know that we can tap into a deep reservoir of resilience if we are not pushed down a path (psychiatric drugs, forced treatments) that makes us forfeit our personal agency. There are no simple solutions to being different: being too bright, sensitive, and/or lacking in ability or desire to compete against the norm, or just unable to fit in and adapt. We are told by the National Institute of Mental Health that one in five of us will become mentally ill at some time in our lives. We can and must decrease these numbers. Is it too late for us to value compassion and empathy above the relentless pursuit of money? Suppose every community could rely on families learning how to support each other through the sharing of what has worked for them and what has not worked?

Our team is growing and finding new allies. How many psychiatric survivors have had to work through their anger at being forced into a psychiatric institution because those who cared about them saw no other choice? We know the power of listening and trying to understand another’s strugglesto be able to trust and keep safe the person we love. I remember asking the late Loren Mosher, developer of the non-medical Soteria model that helps people experiencing psychosis, how long it usually takes for residents to drop their symptoms and return to consensual reality. He said about five or six weeks at most.  

I believe that a family or group of families can use and expand on some of the core principles and values of Soteria and a similarly humanistic approach, Open Dialogue: Both respect personal agency and employ compassion and empathy to nurture the trust needed by a loved one to find a doorway into their resilience. 

This is what we need to do. It is way past time for us to rely on make-believe diagnoses and the drug-based numbing down of those who may look, feel, and act differently than what is considered normal. The strength of our species is in our diversity. If we truly aspire for everyone to have equal rights, it is imperative to allow everyone the opportunity to demonstrate their value. The benefits are worth the risks.

To accomplish our goal of empowering families, we propose:

To develop a flexible curriculum to be used in training facilitators in conducting no-cost family groups. Families within the group will be encouraged to support each other. They will learn advocacy skills, and they will be introduced to and encouraged to support and learn from a network of similarly educated family groups in different locations. Groups will be co-facilitated, open-ended, and with no time limits for participation.

Facilitators will be selected for formal training based on a written application and follow-up in-person or Zoom interview. Criteria for being selected will be developed by the project coordinator along with two experienced consultants. During the first year, one geographic region will be chosen for the training of eight to 10 facilitators. Follow-up research will evaluate the training. Research will help us determine our effectiveness and offer us insights and suggestions on how to keep revising the curriculum—and see what needs to be added or changed for the future training of other facilitators. 

Planning for that future is my aim and hope. Fifty-seven years after I was involuntarily committed and treated with little information, leaving me and my family in the dark, we need to change both the model and the messages being conveyed. Families and psychiatric survivors using what they have learned to help each other is the way forward. 

Those interested in the project can contact the author directly via [email protected] or his website, ronaldbassman.com.

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Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.

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14 COMMENTS

  1. Wow! This is very inspirational! I hope my community (Eugene, Oregon) will be on the short list of communities to benefit from the pilot training program.

    As I write this I am holding in my hands, the original Family-to-Family curriculum, as it was taught when I enrolled in NAMI’s Family-to-Family training in 2011. Two weeks into the class I dropped out because it was so bio-bio-bio and full of pseudo-science and very distressing. You actually have to read it to believe how bad it is. There was nothing in the training about peer respites, Open Dialogue, HVN, Care Farms of Netherlands, human rights, etc. Nothing to instill hope or offer families a supportive role in the healing of a loved one from discrimination and institutionalized abuse. I kept the curriculum all these years because I said to myself, “one day I hope to work with someone who will create an antidote for this dreadful compilation of misinformation and propaganda!”

    One thing that I would like to point out is that the Family-to-Family training was funded by a large grant from Bristol-Myers-Squibbs and Otsuka American Pharmaceutical Inc., makers of Abilify. This investment appears to have paid off. When revenues were declining at BMS, and the patent for abilify was about to expire, researchers were able to find a way to save their cash cow by developing a long term injectible form of Abilify, a powerful neuroleptic now being subjected, by force to many psychiatric patients in the USA and around the world. I challenge someone to find out how many times the word ‘Abilify’ is promoted on the NAMI national website. My guess is about 250 as a conservative estimate

    Right now there are excellent trainings such as IPS, based on Shery Mead’s book, Intentional Peer Support: An Alternative Approach or
    Working Towards Recovery’ by Ron Coleman and Karen Taylor (Recovery College, Isle of Lewis) but often, parents like me often cannot afford to travel great distances to attend these trainings because they are either too far away or the out-of-pocket fees are too high.

    In order for alternative trainings to flourish, i.e. scale up to meet the extraordinary unmet need in our society, we need a combination of grass-roots support, activism, and alternative funding sources, other than the government. Big Philanthropy (Bill and Melinda Gates, Ford Foundation, etc) are absolutely obtuse as to the level of corruption and pseudo-science in the field of psychiatry, so they continue to favor projects that prop up the status quo.

    To scale up this training (and many like it) we need to stop competing with one another. We need a ‘Normandy Beach’ type of planning involving huge numbers of psychiatric survivors, service users, family members, and mental health professionals. People need to stop in-fighting and accusing one another of various sins, put away their differences and unite in a common cause to expose psychiatric corruption, debunk the myths, and scale up alternatives.

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  2. To me sounds like they make the mother look or fake being uncaring.

    On first look one would think being calmed and supportive, or appearing to be, might be a good thing, a good intervention by a medically deputized family member, euphemistically a civilian. Remebering they are neither trained nor qualified to participate in medical interventions, par fiat, as far as I understand.

    But for people experiencing callousness from relatives, which apparently is not the case narrated here, it could not only be “tiggering” but enraging, particularly when compounded with the akathisia, or suspicion induced early on in some people administred neuroleptics, particularly parenteraly, i.e. injected. Added to the overt act of medical agression with involvement of the family.

    As a thing to consider in such medically coerced acts imposed to relatives, from my point of view, one tool in the defensive armamentarium against many acts of aggression, violence and coercion is honesty: “Look, my son, the doctors said this and this this and want to do that and that, etc.”, instead of playing along because the relative has been threatened explictly or implicitly. Or just omited information.

    Confirmed to me because those kind of recommendations sound like the typical divide and conquer: familial honesty and cooperation are being curtailed. And that is rare for an authority to demand, even to suggest it, unless, AFIU, one of the family is actually a victim or victimaire. To not interfere with the course of justice, to preserve evidence and testimony. Which should not be the case in medicine that does not involve violence.

    With honesty, the victim, patient, sufferer might provide information that could help make violence or coercion less severe, find another solution, and still had, and has a right to be informed, among others. Collaboration instead of collusion even if unkowingly.

    In desparation is difficult for anyone, victims and relatives to be aware you and I have been threatened, hence the convenience to talk to someone not “emotionally involved” that can see it more clearly or confirm that suspicion. Someone who obviously does not share the common beliefs of psychiatry: they will most likely confirm and validate the agression. They will provide a false sense of security and correctness.

    Another solo way to do it is remove the labels: where it says illness changing it for crime, annoyance, etc, and see if preserving the “argument”, removing the “loaded”, prejudicious words, the real meaning of what’s been said is in fact a threat, an act of apparent extorsion.

    Aware that many if not all practitioners will use after that another more agressive or powerfull tool. And doing the right thing in those situations is not going to be peaceful, and it will not lead to a good outcome, it will lead at best to a less bad outcome.

    But most relatives are worth fighting for.

    Now, what happens when the doctors recurr to violence, psychological, verbal even legal?. Well, one thing clear to my mind, is that the victim/patient is in great or greater danger from the “treatment” than from the “disease”.

    At least because if the caring and defending relative is threatened, I, and perhaps many people could imagine how graver and more serious danger is for the patient/victim to remain with “these people”.

    It sounds in my overly vivid imagination as kidnapping and extortion, not medical caring treatment. After all, in almost all, and I really mean almost all medical situations a weaver, a responsability shifting written agreement in most situations extinguishes or limits the liability, i.e. the obligation to protect the patient’s life/health and the “danger to others” for the practitioner. Checking with a lawyer might be appropiate.

    Now, if the relative is being coerced or threatened then my consideration, not advice is to talk to a caring knowing person not in the field of psychiatry, a bioethicist, a philospher kind of person and very likely a lawyer. Since there were implict or overt threats, and that has been, and it is a crime, and as such, whether it was commited or not is up to the district attorney/police, not the doctors, not the relatives, not the hospital, etc.

    Defensive or frankly oppositional positions from the practitioners kinda confirms they have something to hide, reluctance to be involved from human rights comissions kinda confirm the abuse: they are unwilling to be actually involved in human rights abuses, particularly when serious against a single individual. When there really exist such abuses, said comissions in many cases have to be forced to be involved. At least a lawyer has to be involved for the complaint to be dutyfully acted upon.

    For the relative and patient to collaborate with the treatment ALL doubts have to be anuled by proper, legal, moral, medical, human rights ways. Refusing for a competent authority to intervene is proof, I am no lawyer, that definitively something wrong is going on: practitioners are bound to COOPERATE with such inquiries. It is not a choice or something within their will or JUDGEMENT. Jurisdiction of it belongs to a different authority who has jurisdiction over practitioners.

    So, relatively the same dynamic applies to medical boards and hospital’s service users advocacy. They are bound to inforce compliance and in turn to comply to some other authority.

    Coercion, threats, and demands of acquiescence, even simple, “mere” dishonesty by concealment of facts/harms and risks, are particularly excruciating considerations since the victim/patient is at the mercy of “these individuals”. Defense or resistance, even doubts, granted, it could lead to retaliation against the victim/patient, but sadly, at that point I think there will no doubt. Perhaps disguised as treatment resistance, lack of insight, lack of cooperation or “deterioration”.

    So described like that, the victim/patient looks more like a hostage. Maybe there are literaly or investigative parallels between what relatives and patients endure and acknowledged hostages suffer?.

    For a case proving how torturing the whole process of defending a relative is, there is the case of the Stences:

    https://www.madinamerica.com/2022/07/catherines-story-a-child-lost-to-psychiatry/

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  3. Thank you for such a clearly written article and one that includes the various perspectives at work in moments of desperation seeking quick “Solutions”.
    You described so succinctly the sense of what I’d call alienation when those who care “ Too cheerily” resort to a belief in a Marcus Welby MD (tv dr. character from 60s) type health care system, often while the incarcerated is directly dealing with the same or similar surreal dichotomies between public perception of mental health care and the gruesome realities.
    I was forcibly incarcerated and force drugged due to a reaction to prednisone (and some bad luck in a culture that gives police too much power and not enough accountability…i was privileged enough not to learn directly about law in forcements’ insane overreach powers until this incident in my late 50s). I had not, threatened myself nor anyone else in any way, behaviorally nor verbally, nor did i have any history of doing so.
    Anyway i understand your focus is family and programs need a focus. I also want to aknowledge though that so many don’t have families or as you mention have abusive families, even unintentionally, so i hope programs that focus on community support become more prevalent..don’t exist at all in N. CA…peer groups are fine but too often are all that are offered, over relied upon and not enough. Also needed is experiential therapies, opportunities to have new experiences to unlearn and relearn other ways of being . Peer groups can be great for many things and also though over relied upon by the system because they are cheap compared to quality therapy that is many times a week by someone trained.
    I have cPTSD and personally experiential therapy is what i desperately need in my 60s due to severe abuse in childhood but moreover, I have now realized, due to isolation and alienation and instability (in foster system moved all the time) that meant coping factors as simple as hobbies, social connections, and identity I didn’t have the conditions to to develop and was even trained to fear; those are wounds that, like malnutrition, do not diminish nor do they magically appear when age 18 adulthood is reached anymore than someone can at that age just suddenly plant, grow, cook their own food from scratch – we are still in need of help, social help that no medication can replace or even make the lack of endurable.

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    • Thanks for reading and your thoughtful comments. Yes, you are right systems of genuine care for those who are distressed are a tragic mess. There are a multitude of problems which makes it difficult to know where to start. I am hoping that the family project that I and our small group are developing will be helpful, and of course the multitude of problems will not be solved. Our project, now called Survivor And Families Empowerment (SAFE), I am hoping will make a difference in preventing a percentage of people from entering a “treatment” system that is more often damaging than helpful. I wish you the best. Ron Bassman

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      • What people, like my son, need is a sponsor, like AA has, someone not tied to an organization. And I’m waiting for the class action lawsuit, all the damaged people from Big Pharma, surely we can hurt them where it counts.

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  4. Dr. Bassman,
    It was going well for me and then…. ‘We are told by the National Institute of Mental Health that one in five of us will become mentally ill at some time in our lives.”

    YIKES! What is THAT doing in your article?

    The NIMH credibility is laughable/dangerous/political. And the definition of “mental illness”-I mean…consider the source…the Pharma funded, APA’s DSM?
    Please say it’s an editing error.

    The Gates folks are alarmingly mislead…as is the (former Pres) Carter family group. A tragic waste of resources.

    But, yeah…NAMI is nothing more than a street-rep guild, pimping/recruiting for Pharma. Especially their emphasis on & magical ability to procure quick, easy access to the drugs-discounted or free! (“Our special relationship”…)
    Their financial disclosures are a roster of the industry.
    When frightened clients & their families are referred to NAMI as a ‘real-world, peer-to-peer’ (implied trust) org (lived experience ‘guides’) who can effectively respond to their questions & fears, it’s simply indoctrination…the Judas goat leading the trusting over a cliff.

    As I was being withdrawn and receiving my paperwork that rescinded the industry’s “life-long” bipolar diagnosis AND cancelling the separate Arizona ‘forever’ SMI certification, I had contact w/the Phoenix NAMI ‘poster boy’, trotted out for promotional ‘grab n, grin’ photos and an ‘expert’ resource for local support groups & the ‘facilitators’…his ‘approved’ coterie of true-belivers w/diagnoses (!).

    He was a smug little guy, having been praised & petted publicly for being “high-functioning”…. thinking that was a compliment & resume’ builder.

    On a brief call regarding a dangerous ‘group’ situation I had witnessed, I told him about my “exit” AND who was authorizing it (the CMO/VP of the largest state BH contractor), he snapped, almost shouting… “That’s impossible”…and was clearly agitated. The concept of an exit from psychiatry was beyond unsettling to the ‘Force’ and….he was concerned my ‘notoriety’ might compete with his own. Only ONE important mentally ill ‘STAR’ allowed. Quick end of convo.

    He needn’t have worried. I was planning my quickest escape route from Phoenix…when/IF my withdrawal seizures stopped.

    It was an unthinkable breach of his ‘deflector shield’, a threat to the tiny status given to him by the community, as THE authority on the ENTIRE topic of Mental Illness…for ALL patients…EVERYWHERE.

    BTW-After my documented, groundbreaking ‘vacation’ of both the “lifelong” bipolar diagnosis and SMI status, I contacted NAMI, asking them to respond to the industry’s unthinkable reversal of an absolute pillar of their (shared) ideology…oops-“evidence-based science.”

    They did not respond…to two big emails.
    Perhaps you share my surprise..

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