Showing 100 of 601 comments.
Foglight, please don’t leave. All the good ones leave. Your patient could have been my daughter.
Bravo! This article is like a beacon or a proud flag flown on the battlefield of ideas, even as the opposition lines up on the horizon, outnumbering us as usual, with their usual mercenaries: bought and paid for media ‘journalists’ and other propaganda specialists, discombobulated family members, sold out scientists, brain dead faculty members, and saavy pill pushers. This time, we are wise to the tactics of the opposition, like the way it co-opted the rhetoric of the recovery movement, begrudgingly throwing a bone to the existence of trauma and childhood abuse, while failing to acknowledge the huge elephant in the room, the stigma of having a permanent label, the trauma of being diagnosed and cared for by uncaring, cynical, time-pressed, uncommitted, overpaid, and burn-out professionals, the trauma of having the ‘treatment’ ruins one’s lives, and having no one believe in that fact, the trauma of having one’s person hood, privacy, dignity, and civil rights taken away, all of which constitutes harm and abuse.
Gabi: I’m slow to forgive and quick to anger, not the best person to advice you in this matter but my two cents worth:
Maybe forgiveness is a muscle that needs to be used on a regular basis or it becomes ‘atrophied.’ Why don’t you practice forgiveness on a small scale like forgiving the person in front of you in the express line who has fifty grocery items in his cart instead of fifteen? Or the person who cuts you off in traffic?
It stands to reason that when you forgive people frequently for smaller things, one could work one’s way up to forgiving people and institutions for larger things. I have always found it difficult to forgive people who are oblivious to the pain they caused others. Perhaps, if one waits long enough karma catches up to one’s abuser in one’s lifetime in which case one has to decide whether or not to feel pleasure or pity for one’s abuser. Maybe I’m naive. Best of luck. Thanks for sharing
Wow! Great idea Julie! Thanks for sharing!
Congratulations Bonnie on an incredible victory. Sylvain brought up a similar fear that I deal with on a near daily basis in my own little activism here in Oregon, “They have more power” and “They have more money!” “We are so powerless” and “We are so penniless”. In every other movement for social justice (or the environment) in which I have been active, I have never been so consumed by such fear of failure, as I have with this movement for human rights in the mental health system. Your victory ignites me and gives me inspiration I need to carry on in my own little universe to continue to knock on doors and speak truth to power, and write letters, and go to town hall meetings and challenge the prevailing authorities that have spread lies for far too long.
The insidious means by which a big cartel of pharma companies, colluding with the APA and pseudo consumer organizations like NAMI could shape our entire culture’s view of human distress and twist it to their advantage, is nothing short of breathtaking.
In your work, to educate people in institutions in which not only the institutions themselves have become corrupted, but whose academic programs cater to millions of otherwise bright students who routinely suspend their intellectual capacities in the promise of a ‘magic bullet’ solutions to human distress, is a gargantuan task. I tip my hat to you for your steel will power, vision, and clarity of purpose as you forded through very dangerous waters and came out the other side.
Will your project offer any networking opportunities for family members and allies? I am a mom and I don’t feel that NAMI is a good networking place for me to support my loved one who wants to reduce/come off psychiatric meds. In NAMI, it’s a taboo subject.
Dreams are awesome!
Yes, I couldn’t agree more with your statement ‘People do need to get it out of their system sometimes.”
Congratulations! This is a wonderful, well-written piece and I truly enjoyed reading it. I appreciate your down-to-earth humor, somewhat self-deprecating style. While poignantly describing the degradation and futility of forced/coerced treatment you managed to avoid the minefield of traps that so many of us fall into when recounting stories involving psychiatric fraud and abuse
Last year or the year before, I can’t remember when, I started to develop some insight into my own daughter’s ‘psychosis’ insofar as she finally made me understand that it wasn’t all awful. In fact, she finds it entertaining at times. At times, the imaginative scenes playing in her mind are often pleasant and even erotic. I can see where such an imagination can really yield benefits while dealing with the daily tedium of being locked up in an institution without access to literature, the arts, sex, romance, humanity, and well, diversity of opinion.
When contemplating psychiatric fraud and abuse, I need a repertoire emotional responses that is more diverse than anger, anger, anger for my life to have some balance and fun. Humor is the best pill sometimes.
While I will probably continue to advocate for ending all all force and coercion in the mental health system, or for that matter, any ‘treatment’ which is degrading, humiliating, futile, harmful, even fatal, I would like to see humanity develop greater bandwidth, tolerance, imagination, insight, and less toxic reactivity when fellow human beings display behavior that is outside the narrow confines of ‘normality’
As David Oaks says, “Normal behavior is killing the planet” . ‘Creative maladjustment is needed to eradicate normal behavior when ‘normal’ behavior is destructive. If we teach our children that ‘conformity and ‘normality’ are the highest ideals to which they must strive we are not giving our children the skills they need to confront and address injustice. It is also not very fun.
at this point I could use less eye witness reports of psychiatric abuse, less evidence of psychiatric corruption, and stories like this which show humanity at its maddest and brightest.
If folks who are commenting on this blog believe that psychiatric drugs are linked to school shootings and want to do something about the problem, not just talk in an echo chamber, here is a petition folks can sign:
Steve and Yeah I Survived are both right. We should not be breaking out the champagne bottles because of this one critical study. Primary care physicians are still the number one on-ramp for receiving an ADHD diagnosis. For that reason alone, The Journal of Psychiatry can afford to publish this study because, after all, psychiatry can point fingers and say, “We did not create this over-prescribing problem, pediatricians and primary care providers did!” In fact, one could argue, the publication of this study in a journal dedicated to PSYCHIATRY is likely to have far less impact on prescribing for ADHD than if it had been published in a journal for pediatricians. Still, some readers of this article may be start to develop a healthy skepticism. Maybe some parents, upon reading this article may be more inclined to ask their doctors some tough questions, such as do they tend to believe or be influenced by the rubbish in the medical literature that passes for ‘science’? After all, readers can’t help but wonder what kind of marketing went into this epidemic of getting children hooked on clean meth?
Knowledge is Power..
One of the stakeholder groups you mentioned, insurance companies present low yielding fruit in terms of strategic reform legislation. My daughter’s multiple ineffective and inhumane involuntary incarcerations at a private hospital cost our private insurance company several hundred thousand dollars. It took us years to pay off the co-pays. Where is the outrage insofar as many people are being forced to pay for the torture of a loved one or that insurers and taxpayers are asked to foot the bill for torture, fraud, and iatrogenic harm. I have since learned that consumers can ask for an internal or external review of all insurance decisions. Insurance companies in many states have been forced to implement parity laws which gives mental health disorders equal status. We need to extend the benefits of insurance to cover other more effective humane alternatives outside the medical model
I am wondering about the word work too. Shouldn’t helping people be a pleasurable pursuit? I equate work with chopping wood and cleaning the hair out of the shower drain. Sad to think of giving another human being emotional support the same status as the thousand details I procrastinate and avoid everyday because it is work
Good point Julie! Love your passion for plain language,, as always.
Every little bit of data helps. Nibble away at the clinical practices, subject prescribing practices to scrutiny, expose the ridiculousness and subjectivity of the routine diagnostic rituals to the public, one person at a time
I’m surprised this got published. Do I detect a little integrity at an academic institution? Let’s watch the push back. Florida International University will not get future federal funding. Margaret H. Sibley will get sacked. If she has tenure, she will not be asked to serve as a keynote speaker at future APA conferences or present her paper at gala events sponsored by big Pharma companies.
Thank you for sharing your knowledge. To me, this reinforces everything I have come to learn about and lament per the failures of the western approach to ‘psychosis’.
You wrote: “Mental health providers should be respectful, compassionate and understanding, but they are too busy “fighting psychosis” and hence, they do not see their “patients” as who they really are — as whole people. They keep people sick with their unhealthy approach and their suppressing drugs.”
As a parent, i realize that this applies to family members, friends, and caregivers too. A hard take away but very true.
And I also apologize for the angry tone in my comment. I sense from your other comment, you are trying to do the right thing but you are complicit as a professional by working in a broken system that abuses people, pure and simple. When professionals who make money off the broken system lament about how nice it would be if the system were different, I can’t help but ask myself, what is your strategy for resistance? How do you challenge your colleagues when they disparage and dehumanize their clients? How do you own your privilege when working with people who have lost everything? How do you honor your client’s right to choice and autonomy when they have been court ordered to receive McTherapy?
Knowledge is Power:
As the parent of a survivor, a beautiful, intelligent daughter who was court ordered to receive conventional psychiatric treatment for about eight years, I find your comment slightly chilling. You identify as a clinician who is “highly trained never to disclose unless it is in the best interest of the client” is chilling for several reasons.
“Untrained” psychiatric survivors delivering peer support probably have a lot more discretion and self restraint as it concern ‘self disclosure’ than you think. They probably know a thing or two about what is in a peer’s ‘self interest’ too.
Survivors know that what they say to a professional will get documented in their medical records permanently and follow them from facility to facility like a ball and chain. What you say or don’t say can get you kicked out of psychiatric facilities without a discharge plan or any support services like housing. What you say or don’t say can be used against you in a hearing to take away all your civil liberties. Survivors know a few things about self disclosure, probably a lot more than you give them credit for. This kind of experience in self disclosure you can’t learn in college.
What also chills me is the implication that you, the professional always know when self disclosure is in the best interests of your client. Do you always ask your clients before you disclose something if it would be in their best interest? In fact, how do you determine what is in their interests generally ? Do you spend hours reading 1,000 pages of their medical records to find out shocking examples of iagrogenic harm? When doing a client’s ‘history’ in while checking off little checkboxes, do you remember to ask if your client has ever been the victims of psychiatric abuse and harm or institutional betrayal?
I am concerned about your implication that self restraint and discretion as it concerns self disclosure can be trained in a formal, academic setting. What did this training consist of? Did you give up a weekend to do a CEU on this topic? Did your professor assign a book on the topic of self disclosure and you parroted back the answers on a pop quiz?
Self restraint and discretion as it relates to self disclosure and when such disclosure is in the interests of someone you care about are character attributes that can evolve naturally as a result of suffering and believe me, if you were court ordered to sit through hours of checklist interviews from pompous trained therapists and other ‘clinicians’ whose compassion ceased the minute the short hand reached ten minutes till the hour, you would understand the importance of self restraint and discretion.
Peers are less likely than professionals to be thinking of the client in the lobby, the clock on the wall, or the billing paperwork. They are more likely to be authentically with someone, sometimes for hours, tolerating silence, weeping, even catatonic behavior from an acquaintance, friend, or family member.
Peers are more likely to resist the temptation to blurt out platitudes in response to gut level pain, and less compelled to maintain a professional front (which is more for your protection than the protection of your client)
Peers are less likely than trained professionals to use invisible teleprompters, spitting out dogma from some theoretical framework they learned in college.
I concur with Ron Bassman! If people drop out of the movement now because things are looking bleak who will mentor the next generation of psychiatric survivors? My beautiful daughter is only 28 and she has been institutionalized and forcibly medicated for nearly 10 years, nearly half of her life! Who will teach young adults how to organize and stay the course when things look hopeless? I hope that people with lived experience who retire because of the the restrictions placed on them by their employers, will use the freedom of their retirement to get more involved in the movement for human rights (after a good vacation, of course)
Thank you for laying out these issues perfectly! I find it incredibly useful to distinguish between peer-developed peer support and peer staff model. I think you are spot on about the origin and history of peer-developed peer support in the seventies and it makes a lot of sense that this history should not be overlooked.
Some individuals identify with their mental health diagnosis and identify as being helped by their conventional psychiatric treatment. Do you think that peer developed peer support is dominated by individuals who identify with having been harmed by psychiatric treatment and who are therefore critical of psychiatry in general?
I occasionally hear complaints in social media sites from individuals who feel that they are being ‘pill shamed’. I have no way of telling if this is an authentic silencing of voices in the peer support movement or if this is a tempest in a teacup being generated by big Pharma trolls, or perhaps a mixture of both.
Also, I have a question about the degree of harm that a person experiences in the mental health system and whether this is a factor in sizing up whether an individual qualifies as a peer, in the absence of any standardized definition of a peer.
For example, I am a parent who has receives voluntary mental health counseling. I collaborated with at least two counselors to select a diagnosis of ‘adjustment disorder’ mostly for billing purposes.
Acquiring a mental health diagnosis allows me to to obtain talk therapy that I would normally not be able to afford and I find it to be empowering. It provides me with insight and inspiration to fight for human rights in the mental health system.
Does my experience in the mental health system qualify me as a peer or does one have to be a victims of psychiatric torture and abuse? I think there are more distinctions that need to be made in this whole discussion of ‘Who Gets to Define What it Means to Be a Peer.”
In my mind, I am a peer but not a psychiatric survivor. How important is this distinction when applying for work in the mental health field?
Is a psychiatric survivor at higher risk of employment related discrimination if he/she is out of the closet about his/her psychiatric abuse? Conversely, is a staff peer who is happy about the psychiatric services he/she received in the past less likely to experience employment-related discrimination?
Is employment related discrimination likely to result in a migration of peers back to their ‘roots?’ (from the peer staff model to peer led peer support model as characterized by grass-roots groups meeting in church basements as they did in the seventies?
The fastest growing trends in the movement for human rights in mental health seems to be Hearing Voices Support Groups and Psychiatric Drug Withdrawal Support Groups. These seem to me to be genuinely inspired by the principles of peer support your identified as peer-led peer supports.
I am heartened that the Hearing Voices movement is developing some services for family members so there will be alternative ways for family members to get plugged in, besides NAMI which has become depressingly sold out
Steve: I agree with you. I favor CBT because i’m one of those people who believe I can ‘think’ my way through my problems. But people who practice CBT often pretend to be open minded when really they harbor strong values that they wish to impose on their clients.
Hey the link goes to the wrong article
I received several years of outstanding counseling from a Licensed Professional Counselor who was extremely knowledgeable about psychiatric abuse and how it had affected my family. I miss my counselor! He is stupendous! Embarrassingly, I can no longer afford the expense of seeing him.
I don’t know about others who hope to benefit personally from this framework. To me it sounds wonderful. However, this type of approach would require a lot of work. In my previous two years of counseling I barely touched the surface. It would take time for me to become conscious of the many ways that I responded to threats in the past. It could go all the way back to my childhood and have relevance to my marriage, home-life, parenting style, career, social life, etc. My MO may also be tangled up in my impulsive/compulsive behavior and other bad habits I have acquired along life’s way. Talking about such things elicits shame and embarrassment, and it takes time to build trust. Most private insurance require that a LPC’s and other practitioners diagnose a client using the DSM and come up with a treatment plan in order to be compensated. There is a sense of ‘hurry hurry, hurry’ when dealing with the medical industrial complex in the US.
In the UK, this model may have a chance to see the light of day. It might win some research grants and have a chance to be implemented in a more ‘outcomes’ based socialist medical system. In the U.S. even if this model were very worthy and had a large evidence base, its proponents would face a steep uphill battle to gain the attention of the guilds and the media and a huge lobbying effort to force insurance companies and government programs to provide access. If it sounds too good to be true, it is.
Also, in this model, there is a sense of providers biting the hand that feeds them.
Missy and Skylar, I am glad you both came to the understanding that you don’t need to fit into a ‘psychiatric paradigm’ to be happy. I look forward to more blogs from you!
The failure to identify access to healthcare as a contributing factor to bad outcomes without simultaneously identifying the utter lack of choices and alternatives available in the healthcare system, even to privileged people with cadillac insurance makes this training program utterly disingenuous and useless. Rich white people get the same sh*tty treatment in the mental health system as disadvantaged people unless they luck into receiving genuine fully informed, non- coerced treatment up front.
Great article and good response to the first comment. I don’t really see why folks who identify with having been harmed by psychiatry are so ready to shoot down the concept of nutrition having a major impact, at times, on ones mental and emotional state, our moods, etc. There are chemicals in food we eat everyday. Environmental toxins play a role too. For XMAS I got an air filter and when I used it, for the first time in months, I had a blessed reprieve from a hacking cough that plagued my sleep for months. Could the air filter have been a placebo? Yes. But maybe it wasn’t. Maybe my cough was a inflammatory response to small particles in the air including airborne dust and woodsmoke. Any new option or alternative we receive with a smaller side effect is a boon. I can’t envision a system in which people are coerced to stop eating junk food and eat leafy greens or take micronutrients, a system in which soda pop is prohibited. Nor would I promote such a system. Empowerment is at the root of all healthy living. People need to learn to make choices that are good for them but having data is huge. Yes, there will be quacks when we move to a system that honors people’s right to choice. We will have to be on guard for all kinds of scams. All the more reason to have research that helps us eliminate fraud and quackery.
My experience with the air filter (placebo or not?) made me realize that in the process of debunking the myths of psychiatry and attacking its corrupt junk science we run the risk of failing to identify even small, environmental triggers and nutritional deficits in ourselves and our loved ones, which if resolved, could make our lives a whole lot better!! Who cares if something is a placebo or not? If it works, it works! I dream of a system where the mental health system is like a buffet. If I arrive at the buffet straight from the desert, starving and thirsty, I may gorge at first but little by little, as my body adjusts to the offerings, I will slow down and become discerning and start partaking of every healthy offering before me!
I’m sorry for loss. Thank you for going public.
On your foundation’s website I found the following:
“Mental Heatlh First Aid teaches you you how to idenity, understand and respond to signs of mental illness and substance use disorders in your community. Mental Health First Aid is an 8-hour course that teaches you how to help someone who may be experiencing a mental health or substance use challenge. The training helps you identify, understand and respond to signs of additictions and mental illness. To find a Mental Health First Aid Course close to you, check out this website https//www.mentalhealthfirstaid.org/. (I left in the mispellings)
I wish you would promote emotional CPR instead.
The problem with mentalhealthfirstaid is it is just another early screening program, the darling child of NAMI, a corrupted organization which promotes the false narrative of psychiatry. Early screening programs, rather than destigmatizing and teaching people about alternatives that ‘first do no harm’ are simply funnels to a faulty treatment paradigm.
The epistemic authority of mental health system is considered to be the person who is a board certified psychiatrist. Psychiatry holds that all ‘mental illnesses’ are chronic brain diseases with biological origins, namely, an imbalance of neurotransmitters. This is a false narrative of human suffering that is promoted by the industry that benefits from sales of drugs, which sedate and do nothing to ‘correct’ imbalances of neurotransmitters. In fact, neuroleptics like the clozapine which your son was taking causes a shrinking of the brain.
My daughter was hospitalized in a state hospital several times for schizoaffective. We are desperately trying to help her taper off clozapine because we could see immediately how negatively it has impacted her heath: weight gain, heart burn, lowered cognition, disorganization sedation, fogginess, goiter, labored breathing, incontinence, prone to infections, etc. But there are virtually no psychiatric drug withdrawal support systems in place due to the corruption of the field of mental health. Even the so-called consumer advocacy organizations like NAMI receive corrupt funding from big Pharma. Where is a parent supposed to turn to?
As a parent I feel that all the cards are stacked against young people with a psychiatric diagnosis trying desperately to live a drug free existence. Our entire culture has bought the false narrative of psychiatry hook, line, and sinker that sedating people with mental and emotional problems is the first line of defense against ‘mental illness.
Just as young criminals become hardened when they are sent to large prisons and come out career criminals, involuntary treatment and forcing drugging hardens and makes individuals experiencing trauma distress, and grief much, much worse!
My daughter experienced extreme civil rights violations in the mental health system: restrain, isolation, seclusion, institutionalization, and forced medication. The drugs she was forcibly injected with caused adverse reactions and caused her to become uncharacteristically violent giving her a criminal record. Her forced drugging also caused her to experience new psychiatric symptoms! Instead of removing her from an offending drug, arrogant doctors completely and willfully ignorant, would treat her with contempt, raising her dosage to ever higher levels, nearly killing her!
There is not a single case of trauma, anxiety, and distress that cannot be made worse by psychiatry, forced drugging and institutionalization.
Your use of the word voodoo treatment is spot on. These drugs are shotgun approaches that should be used judiciously for very short periods of time but instead psychiatrists are so corrupt they are not willing to admit that patients get chronically dependent and often become much worse after being put on these drugs. Consequently our children are suffer ing great harm when they try desperately to come off these drugs without any support.
Usually patients like my daughter are stigmatized as ‘non compliant’ and they attempt to secretly coming off their deadly cocktails without any social supports. Consequently, many pf our most iatrogenically harmed children end up relapsing going back to the hospital where they are even more drugged up.
Drug solutions to emotional and mental problems are nuclear solutions.
I’ve been observing the movement to prevent physician suicide for several years now. One of the biggest drivers of psychiatric abuse (besides the overmedicalization of human suffering in your field generally) is related to a problem faced by doctors in all specialties, not just psychiatry. It is the sadistic practices in place at medical schools and hospitals. These practices are a twisted form of hazing. Residents are forced to work long hours and are treated like sh*t by senior staff. They then turn around and direct the abuse they received onto their patients, thinking it is normal.
We must reject ‘normality’ in all of its perverse forms. ‘Normal’ behavior is killing the planet. We are demineralizing food, polluting the earth, air, and water, and turning the helping professions into institutions of harm and corruption.. Corporate owned media is dumbing down our society, and institutionalizing people in warehouses is viewed as ‘progress’.
I’m sorry to say this, but while I am slightly sympathetic if you took out a loan of $200,000 to make it through medical school, making you virtually into an indentured servant for three decades, but there is a huge problem with the status and level of reimbursement afforded to members of your profession. We pay child care providers and care givers for the elderly about 3% of your hourly wages. They lift and transfer patients, massage them, bathe and help with their hygiene, nourish them, take them to appointments, etc. and yet our society values their labor at $10/hr v.s. your $300/hr.
My brother left the practice of medicine after twenty years doling out pills to his patients and became a landscaper. Now he heals the earth. He has never been happier.
Just got my copy in the mail! Can’t wait to read it!!
This is a biased study and missed the point. How can you use Medicaid records and completely beat around the bush as it concerns child and family poverty? Only a privileged researcher working in an academic bubble would not know that what is referred to as a ‘quick fix’ is a financial life preserver for a family one paycheck away from homelessness. A diagnosis and ‘proof’ in the form of a child needing powerful adult medications is how a desperate mother convinces a doddering old while civil servant that her child should receive SSI income. That extra $500 per month can be a Godsend thanks to Bill Clinton converting welfare into the punative program it is today called TANF
This is speculation but my guess is that if you find a substance similar to stomach acid you can hack this ‘high tech’ gadget, say by throwing the God d*mn pill into a glass of lemon juice. It just takes cheeking to a new level. Facism prevails when fear is endemic. It’s good to be vigilant but don’t lose hope.We will win this battle and win our human rights!!
I am mad as h*ll reading about this problem. I’m all fired up. You are right. We need to organize. I’m going to read your entire blog from start to finish when I get off work, as well as every comment posted on this blog and ask myself, what can I do?
I am not involved with academia but I am glad you brought this problem to my attention.
I have an adult daughter who is one of the ‘others’. She has an incredible mind for philosophy and she is tremendously creative when it comes to the arts but she is different. Is there a place for her in a college community? If the university is not accepting of her differences then there is very little hope. After all, the university is supposed to be a tolerant environment and attendees are supposed to be dedicated to the pursuit of knowledge. People can learn a lot from talking to my daughter if they truly have a curious nature but she can mutter to herself at times and say and do strange things. Oh my God! I’m sorry if this disturbs you or makes you feel ‘unsafe!’
Gads, there is a homeless person walking on the university grounds. Someone get out the Lysol and spray the university! Report it to campus security!!
i hope your book will sell lots of copies and get on the best seller list so more people of the ‘worried well’ will be advised to steer clear of psychiatry. As my friend Marcia says about living in our times, “If you are not disturbed, there is something wrong with you!” My belief that people experiencing overwhelming distress, anxiety or depression should steer clear of psychiatry is not to make light of people’s pain but only that we need to redouble our efforts to educate people that psychiatry can quickly compound one’s problems and what is needed is a full fledged common movement to create caring, tolerant and compassionate communities and sanctuaries for people whose emotional needs are not met by family members and friends.
Thank you for your unpaid, high level work on this important issue!
What is WGAD stand for? Do you know how we can put pressure on Congress/Senate to ratify CRPD?
I visited this organization’s website
https://dredf.org/ and in 2013, in their archives, they announced that a call in day for CRPD on November 12.
Do you know of any national campaigns in this area?
Finally, I read your comment with interest:
“Their information was limited by the extent to which we were able to provide legislation from particular states (we did not have the capability to inform reliably on each of the 50+ separate legislations) and by their inability to visit any civil-confinement mental health facility”
What do you think can be done at the grassroots level to obtain the data showing how many people are involuntarily committeed, drugged, shocked, etc. in the U.S.
Some states may have better options than others for this kind of data, Here in Oregon, we have the Psychiatric Security Review Board (PSRB) for people who plead guilty, or are convicted of a crime (no matter how minor) but who plead ‘guilty except by insanity’ PSRB is a highly restrictive board that manages forensically committed individuals, many are restricted for life. I think PSRB would have very good data for at least the state of Oregon but does one have to file a FOIA to obtain the data from PSRB? Can an agency use HIPAA to prevent journalists and researchers and activists from obtaining this data?
Dear TRM 123, do you have a website?
Tina, thanks for the citation. I will be checking out that site!
Hang in there Yet Another Account! I am so sorry to hear about your family not respecting your perspectives and beliefs. Have you thought about leaving educational literature around your dad’s house and de-indoctrinating him with homeopathic micro doses of data? I’ve heard that sometimes you have to walk away from family. I am very fortunate, insofar as my husband is proud of my association with MindFreedom and ditto with my own father. There is a strong anti-authoritarian strain that runs through my extended family.
But the members of my family who make their living in the medical industrial complex are slower to grasp the data showing harm of long term drugging. both cling to the belief in the appropriateness of involuntary treatment for people who have the odious label, “SMI”. I gave a copy of Robert Whitaker’s ‘Anatomy of an Epidemic’ to my sister-in-law, a pharmacist and my brother, an MD. They both failed to read the book but we left the issue alone for many years and continued to remain cordial to the greatest extent possible. But as I continued to share with them my personal experiences supporting an adult child through the day to day challenges of psychiatric drug withdrawal, their icy resistance to considering data about the risks and potential harm of long term drugging began to thaw. My sister-in-law even offered to titrate my daughter’s medication in her lab. If NAMI were only in the business of offering parents an array of perspectives, most importantly, the voices and stories of experts by experience–individuals who identify has being harmed by involuntary treatment–there wouldn’t be so many close minded parents and TAC wouldn’t enjoy the authority it currently does. Alas, history took a wrong turn somewhere when NAMI colluded with the APA to promote a specific narrative. Thank goodness for the courageous and selfless work of activists like Tina Minkowitz, Frank Blankenship, and other activists/leaders in this field. Activism is moving the needle slowly.
This article is an important resource for activists. In layperson’s language it explains how confirmation bias plays itself out in research social and behavioral sciences.
Activists who advocate for choice, alternatives, and human rights in the mental health system are rooting for higher scientific standards and a long overdue overhaul of what constitutes an ‘evidence based practice’. Higher scientific standards can only help our movement to revolutionize the mental health system
The author has laid out a central problem with behavioral science research that even a layperson can grasp, it’s vulnerability to corrupting influences, and proposed a valid solution: establishment of psychology research “preregistration,” where investigators would be required to submit an introduction, and their proposed methods, definitions, and analyses, before they collect their data.
May I suggest that well intended researchers and readers of MIA who do manage to obtain independent sources of funding for alternative approaches to psychosis (out of what little exists) apply the higher standards laid out in this article voluntarily by pre-registering and declaring their methodology before they collect the data? Even if the status quo researchers are not required to do so, doesn’t mean we can’t apply the higher standards ourselves.
Great News! It is available on AmazonSmile (so 2% of the purchase can benefit MindFreedom if folks take five minutes or less to sign up for Amazon Smile and designate MindFreedom International as their designated charity) I will get my copy sometime in November or early December after the release date. If any contributors to Mad in America who are reading this blog cannot afford the cost of a copy ($22 plus shipping) and they are willing to follow up with one or more of the actions suggested by Ms. Burstow, please email me (Sarah) at [email protected]. I am a person of very modest means, but I can afford to purchase one additional copy. (-:
I know some people will be offended by my using Ayn Rand in the same breathe as Martin Luther King. Writers from both the right and the left use the novel to influence people. Ayn Rand influenced a lot of people whether you agree with her philosophy or not. Also, lest someone scoff at my using ‘One Flew Over the Cuckoo’s Nest’ as an example of a novel that influenced people’s thinking, consider this true story: a psychiatrist once stood by my daughter’s hospital bedside, while she lay catatonic for over a week. He wanted to shock my daughter and I was considering filing an emergency court injunction to block his ‘treatment.’ He didn’t want to defend his ‘treatment’ in front of a judge, any more than I wanted to go down to the law library and take a legal crash course. We were mentally drawing swords and circling around one another with my daughter’s spirit somehow dominating the drama, even though she was in a coma like state. I was scared out of my wits because he had power and authority and I was just some frumpy middle age mother with very little resources to hire an attorney Guess what? He was scared too! He blurted out, “You know who I blame? That damn author of ‘One Flew Over the Cuckoo’s Nest!” He made everyone believe that shock is bad!” As it turned out, he didn’t have the heart to proceed and I didn’t have to seek legal assistance because the public exposure in the press is something that the average psychiatrist loathes.
Contratulations Ms. Burstow:
Anyone who has read “The Jungle” by Upton Sinclair, “The Iron Heel” by Jack London or “Atlas Shrugged” by Ayn Rand or “One Flew Over the Cuckoo’s Nest” by Ken Kesey knows that fiction has great impact on social movements. Fiction can make philosophy palatable or create larger than life archetypal figures. Social movements need heroes and villains. Social movements require that the public have their complacency smashed by a clear moral division between good and evil. Dr. Martin Luther King knew the power of civil disobedience and televised images of non violent individuals being hosed, attacked by dogs, even firebombed to create a moral drama, a story that was so compelling, people could no longer be complacent. Wasn’t it Marx who said that ‘Artists are the vanguard of the revolution? I can’t wait to read your book and take some of the actions you prescribe. Good day to you warrior woman.
Dear Dr. Kelmenson, MD. Thank you for sharing your views so directly. I agree with all of your views and I admire your courage and openness. I myself wouldn’t be this blunt to acquaintances of mine who opted to put their children on medication but I am glad you are stirring the pot. Someone in your profession has to turn the heat up. One concern though:
I hope that individuals on the licensing board in your state are not aware of this article. Otherwise, they may feel motivated to fabricate some kind of phony grievance and call you in for a psychiatric evaluation and recommend some kind of disciplinary action, and should you dispute their recommendations, it could put your license to practice at risk.
My uncle was a volunteer doctor for a community clinic launched by the Black Panthers in the early 1970’s in Portland, Oregon. Fortunately, his license was never at risk as he was well liked at Good Sam and Kaiser where he practiced, but the government did tap his phone even though he was never involved in politics, let alone radical politics. He simply wanted to help low income people gain access to healthcare. Take care.
Sonja: Great comment. Loads of insight. I agree with everything you say. The movement’s most vocal activists spend a majority of their time defending funding for peer delivered services and ignore policy. One place you appear to contradict yourself is by downplaying the importance of education while seeking ways of getting professionals to be allies. How would this happen if not by education. Finally, education and policy overlap. Such as a policy to prohibit advertising of pharmaceuticals on television. Marketing often masquerades as ‘education’. Consider the huge volume of pharma funded medical information websites, and the influence of pharma reps on grand rounds at medical colleges. To counter the damage to the public perception of ‘mental illness’ by decades of Pharma marketing campaigns requires a double pronged effort of ‘re-education’ and policies around education
This is much of what Gabor Mate was saying in The Realm of Hungry Ghosts, but there are more citations. I didn’t realize how large the body of evidence is connecting heroine addition and lack of early bonding.
Meaningful employment is not the same as capitalism. Everyone needs a purpose in life to thrive, regardless of what kind of economic system one lives in. The ability to receive a gift in kind or payment for services well rendered or a well crafted, useful product is one of the benefits of living in an interdependent society. Entrepreneurship is a great avenue for the disabled to work around the built in discrimination and/or barriers to the workplace.
I totally agree with Corinna on this. Will Hall didn’t mention the crushing poverty experienced by individuals who are permanently designated as ‘disabled’. Class disparity and the extreme consolidation of wealth to a smaller and smaller segment of society is deeply harming our democracy, but more relevant to this article, our movement for a revolution in the mental health system is not financially sustainable, and bringing one vote to one person does not address the crushing poverty that prevents the number one stakeholders of our movement, psychiatric survivors, from being regular donors and sustainers of the work that must be done to achieve change.
For movements to exist, we need creative and administrative resources to connect people and get the word out to a larger audience, and launch legislative campaigns. We need hired creatives, ad space, public service announcements, computer systems, phone systems, rental spaces, training for activists, etc. We can’t achieve the conventional milestones of a social change movement on air and prayer.
The professional therapist class is not making regular donations to the few independently funded organizations such as MindFreedom International and other independently funded organizations with a track record of launching international campaigns of any magnitude. And the psychiatric survivors, despite all the passion, cannot pick up the slack financially. Psychiatric survivors need meaningful employment, either wage employment or creative entrepreneurship to raise their boats, enabling them to make donations to sustain the organizations they trust to lead the movement. Corinna understands the economic development is the key.
Many psychiatric survivors are struggling to get by on the crumbs of small disability incomes while stigma, lack of accommodation in the workplace, and other barriers keep psych survivors down. Some psych survivors have criminal histories or other histories that make it difficult to find employment in the first place. Giving psych survivors the technical skills and access to marketplaces that they need to establish their own businesses and the capital they need to help their businesses thrive is sorely needed. Vocational rehabilitation programs are under funded and many such programs train psych survivors to do meaningless, low paying work. Raising the incomes of psych survivors is one of the number one barriers to our movement’s success. No leaders and activists except Corinna seem to be raising this point regularly. Kudos to Corinna.
I want to thank survivor activists like Mary Maddock and her partner Jim Maddock, co-founders of Mindfreedom Ireland for speaking out loudly against ETC for decades, survivor activist Ted Chabasinski for leading a successful campaign against ETC in 1982 in Berkeley, California, Celia Brown and David Oaks of Mindfreedom International for leading an international campaign against ETC for decades, and newer survivor activists like Deborah Schwartskoff, founder ETC Justice for her grassroots organizing efforts, including organizing a picket protest in front of Kaiser Permanente in Portland, Oregon several years ago in partnership with Rethinking Psychiatry. It is hard to identify and thank every ETC activist, I’m sure there are many more but those are the names that stand out for me. For paradigms to shift, grassroots activism and direct action always have an important “first responder” role. Litigation will provide an important forum to debate the science of ETC but the key component of any successful campaign is always survivors refusing to remain silent, sharing their stories, and taking action
I meant probation not parole. Parole in the US is the term for a person’s conditional release after serving all or part of a prison sentence. Probation is often the term for a conditional release in lieu of a prison sentence. Sorry for lack of clarity
No, they do not. From experience. In the U.S. itt is very easy to get a court order forcing someone to take neuroleptics. If a hospitalized person in the U.S. refuses to be drugged, a ‘medication over-ride’ can easily be activated by the treating physician if he/she obtains the signatures of two, addition colleagues. To get a discharge, a patient will often have to sign a ‘conditional release’ form. This form often contains the conditions of their discharge (known as a conditional discharge). If they fail to comply with the conditions of their release, they can be rehospitalized. If a person is involved in the corrections system, even for say, a non-violent misdemeanor, taking medication can be written into the requirements of a person’s parole (breaking conditions of parole can make a person subject to incarceration). Medication compliance can be written into a person’s conditions of parole by a law enforcement officer or parole officer who has absolutely no knowledge of the risks and harmful effects of medications. Judges, who also no next to nothing of the risks of psychiatric drugs, can order that a person participate in an ‘Assisted Outpatient Treatment’ (AOT) program even if individuals are living peaceably in their own homes. AOT is a euphemism for forced drugging. In other words, a low wage mental health worker comes to a person’s house on a daily basis to witness a person taking his/her meds. My friend has a son who is labeled with schizphrenia and who was living with her. He was on probation for a non violent misdemeanor and a psychiatric nurse come to her house accompanied by an armed law enforcement officer to administer a depot injection of neuroleptics. It is a flagrant abuse of individuals rights.
My 80 year old mother had a large sarcoma in her lower back. The pain was excruciating and the chemotherapy made it impossible to keep food down. She was constantly nauseous. My brother got her to smoke marijuana and her appetite not only increased, she was finally able to hold food down. She enjoyed a complete recovery from cancer and lived another decade (she died of heart disease ten years later). After her recovery from cancer, she no longer smoked marijuana, and joked about her foray into crime (at the time it was illegal). The only sad part about that story is that my brother risked incarceration by purchasing pot illegally from a street source.
My son’s girlfriend was recently diagnosed with cervical cancer. She is suffering from chronic daily pain but she has a hard time tolerating the side effects of prescription painkillers (narcotics) so she tried CBD yesterday. She was embarrassed to ask her treatment provider for a medical marijuana card and not only did her gynecologist approve, he called around town to find a dispensary that offers pure CBD. She called me yesterday to report the CBD works! (She is taking half the dose of the narcotics with much better results and no side effects. She is pain free, in good spirits, waiting for the scan results to see if the cancer has gone into her lymph nodes. Knowing that she has a new tool in her tool kit to deal with chronic pain, has given her a new sense of hope and optimism. She reported that she is not groggy and ‘on edge’ as with the narcotics, alone. If this is placebo, it comes with a powerful body of anecdotal evidence behind it and we are now a part of this movement away from legally prescribed pharmaceutical drugs, many of which have wrecked lives more than the average MD is willing to admit. The marijuana prohibition for decades delayed people’s ability to experiment with this tool but we need more choices not fewer. It may need more regulation but be wary of ringing the alarm bell prematurely until people have had a chance to experiment judiciously with this new tool.
This meta analysis confirms what psychiatric survivors, their loved ones and allies have been saying for years, but our voices have been silenced as we have been systematically shut out of the decision making process, shamed, shushed, and ridiculed.
These ridiculous prescribing algorithms, created by industry and used shamelessly by practitioners of medical ‘science — people who should know better because of their supposed respect for empirical evidence—-‘ have resulted in over medication and great harm to our children.
It’s time to turn the tables on the epistemic authorities within this corrupted harmful mental health system and demand better alternatives for our loved ones, friends, clients, and neighbors. These people who have been harming our children with impunity, especially those precribers in ER’s, acute care facilities, state hospitals, and secure psychiatric facilities need to be exposed for their abusive practices. Augmenting one worthless dopamine binding anti-psychiatric when it is clearly causing akathesia and other horrific psychiatric symptoms ( aka adverse drug reactions) with another dopamine binding agent of equally dubious value will not help someone experiencing an adverse drug reaction or a paradoxical worsening of symptoms.
How many decades will it take for these shameful unscientific prescribing practices to be suspended and amends made to those who were deeply harmed through years of over drugging?? A complete turn over in the field of psychiatry via aging out and retirement of everyone in the field of psychiatry? The emancipation of all medical colleges and medical journals from big Pharma funding?
Stephen, Thank you for summing up these findings.
Patrick: Here is my two cents worth: Peer certification is not the answer. Certification of peer run organizations is the answer. My guess is that the organization that you represent would not pass a basis litmus test of an authentic peer run organization. The inclusion (51% or higher within leadership and management) of the voices of psychiatric survivors-especially those who identify with having been harmed by the mental health system either through involuntary commitment (loss of personal liberties) or by the lack of access to alternatives and choices —must be a basic criteria for distinguishing a peer run organization from other pseudo consumer advocacy organizations such as NAMI. What is needed is to offer more technical assistance, training, and seed money to peer run organizations and a way of standardizing not individual peer specialists, but standardizing organizations so that an authentic peer run organization can be distinguished from pseudo consumer advocacy organizations which take money from big Pharma. Let the authentic peer run organizations within each state set certification standards for the peer specialists within that state. No need to have national certification standards, too sweeping and too vulnerable to the obvious corruptive influences of government/big Pharma funding.
Thank you for sharing your perspective Stephen. Everything you described is accurate based on my observations when my daughter was locked up in the state hospital. Although the peer worker assigned to her treatment team was very sympathetic and comforting, even admitting privately that patients must ‘play the game’s to get discharged, there was very little the peer worker could do to obtain choices and non drug alternatives for a client.
You wrote: “Since we only have anecdotal evidence at this point that marijuana can aid any medical condition” but I think you are wrong. According to https://www.ncbi.nlm.nih.gov/pubmed/22716160 there is a body of evidence to support the idea that CBD may be a future therapeutic option in what we call psychosis. I have one adult daughter who is struggling with the incredibly difficult task of discerning how many of her psychiatric ‘symptoms’ are caused by original trauma (events stemming all the way into her childhood but also things that occurred as a result of psychiatric abuse (involuntary treatment, forced injection, coercion, restraints, isolation, loss of personal liberties, institutional betrayal by medical doctors etc.) and the psychiatric symptoms caused by the short and long term side effects of powerful “anti-psychotic” ( I use the quotation marks to denote that I do not believe they cure ‘psychosis) medications she was court ordered to take while being civilly committed for nearly eight years. You see, as one’s brain becomes habituated to these powerful drugs, one often becomes a shadow of one’s former self. The symptoms become harder to distinguish-how much is trauma and how much is attributable to the long term side effects of the drugs themselves? The legalization of medical marijuana has given us some interesting options.
My daughter wants to use pot to help her withdraw from meds that she finds even more debilitating than the symptoms of what we call psychosis in order to live safely in the community on her own terms and given some of the adverse drug reactions like akathisia I’ve witnessed while overmedicated, as well as the excruciating pain of acute withdrawal (micro and major withdrawals) which most prescribers arrogantly dismiss as the ‘original illness’ coming back, I would cautiously support an approach using marijuana if my daughter were given such an option. I would like her to have a chance to make her own decisions on what to put in her body and in a corporate environment, patients have become like cattle in a chute, not too many choices. Everyone is different. THC has some potential risks yet doctors like you who point out the most obvious risks of marijuana use are very slow to point out the risk of prescribing opioids, benzos, anti-psychotics, SSRI’s, etc. Pot can’t be much worse than the horrific and debilitating drugs my daughter was forcibly injected with such as Haldol, Thorazine, etc. etc.
While I agree with your call for more regulation such as a cap on the amount of THC in retail marijuana, I think you are throwing the baby out with the bathwater.
Ironically, early screening for depression in youth in our public school system has most certainly resulted in an up tick in the number of children being medicated with powerful medications that have never been tested on children. Many SSRI’s carry black box warnings for increased suicide among youth. Strange, how doctors have been very quick to recognize the dark side of THC which I acknowledge exists, but very slow to criticize those in the addiction industry and depression industries who are quick to get their patients habituated to powerful drugs with debilitating side effects.
Lael, I appreciate your heartfelt perspective and I honor you for your work with clinicians to support those who are stuck in the system. No doubt you have to work with some very unpleasant people who abuse their power at times, or take their privilege for granted. Your comment makes me wonder if we are dying on the wrong hill. Rather than focus on national certification for the purpose of reimbursement and job creation, perhaps we should be focusing on how to get more choices and power to the client such as putting each client in charge of his/her own treatment fund and employ a brokerage system? In other words, work with the repugnant Republicans who are always looking to cut back Medicaid in order to deploy innovative treatment/reimbursement models not dependent on the medical model, DSM, etc
Patrick, my daughter was involuntarily committed for nearly eight years and forcibly medicated with every drug imaginable. For eight years she was a human guinea pig enduring the most horrific adverse drug reactions and withdrawal symptoms that one can imagine.The loss of her personal agency when she needed it the most was deeply traumatizing and harmful. When our family needed hope and leadership at the national level, we looked to organizations like yours to take a clear moral stand on the issue of assisted outpatient treatment, telling the world the truth about force and coersion and how harmful it is to individuals recovering from trauma, your organization, abandoned our family. Your organization, with NAMI, supported the Murphy Bill which morphed into the Cures Act.How can you purport to represent human rights?
Well written, keep up the good work!
When I said ‘aspire to be normal’ I was referring to all my income level, the kind of car I drive, excessive consumption, mass entertainment, comfort objects I surround myself with, and chasing things that bring ‘status’. All of those things seem of little value compared to connecting with someone you love, a slow meal with friends, a gladiolus, a smile, and a small act of kindness.
Harper, you say:
“The survivor movement must broaden its focus and inclusivity to include those who do not have “severe mental disorders” as this is a vast segment of the population that is being ignored in this movement. Millions of people have mild anxiety/depression/etc and may take a prescription or see a psychotherapist, but never have experience in inpatient treatment, ECT, antipsychotic medications, etc.”
If you are talking about broadening the tent to include the ‘worried well’ well yes, it’s true that we need more people to understand that they have a dog in this fight so we are not just this small group of people singing to the choir. It would certainly be nice to exercise some real political clout for a change, not just stand around the abominable wreckage of legislation known as the Cures Bill like deer caught in the headlights. If one person’s rights are violated via the practice of coercive/forced/harmful psychiatry, everyone is at risk. We should all care.
My sister-in-law who takes anxiety medication or my niece who takes anti depressants will ever feel anything but fear and repulsion at the thought of being in ‘solidarity’ with my daughter who has that infernally stupid label of serious and persistent mentally ill
My daughter hallucinates and is out of touch with reality sporadically and we work very hard to create a welcoming home environment for her so she has a sense of belonging and safety to be herself. Her behavior isn’t violent or over the top but when she shares her world view and her basic experiences with others, outside the safety of our home, particularly with strangers, I can see people start backing away towards the doors. Strangers in public places don’t know what to make of her.
Organizing for change requires that stakeholders unite. Uniting requires that stakeholders communicate and feel comfortable with one another. People with general anxiety or depression are trying desperately to fit in, Identifying with the outcasts terrifies them. We can say that ‘mental illness’ is a spectrum and all of us are located somewhere on that spectrum since we all have emotional and mental challenges. As it concerns disability, aging assures that everyone of us will eventually be disabled. But the reality is that the terror of being ‘sick’ or disabled or ‘mad’ or homeless has most of us immobilized in a fog of fear that prevents us from reaching out to the outcasts.
As a family, we gave up long time ago aspiring to be ‘normal’ because we aren’t. Our healing as a family began when we gave up trying to maintain a facade of ‘normality’ Not sure what we are, I guess you could say we are ourselves. But I observe people where I used to be, desperately trying to stay under the radar by conforming to the neighbor’s expectations.
Oddly, it’s liberating on the other side. Giving up the need to be normal changes one self perception dramatically for the better. Tolerance is learned through a very difficult sifting process and burning away with laser precision, much of the crap we’ve a person has been conditioned to believe he/she needs to be happy.
Not sure if we could get my neice and my sister in law involved in the movement. They would spend their time at their first meeting smelling people and wondering why don’t people use laundry sheets and Glade like me, but I suppose its worth a try.
Frank, “Impoverishment in the midst of prosperity, deficits alongside surplus, and waste like it was going out of style” is well stated.
My daughter is very creative but seven years of being sedated/disocciated on powerful anti-antipsychotics has robbed her of the cognitive skills to do creative writing and many of the so-called arts The system needs very talented are therapists who are willing to work with the most psychologically damaged individuals. The art program at our community mental health agency is embarrassing. I think they asked staff at a staff meeting, “Do any of you do arts and crafts?” Whoever raised their hand was henceforth in charge of the shiny “art program” at our agency. Meanwhile, the authentic art therapists train to teach those populations most likely to receive funding outside the system (V.A. cancer survivors, geriatric, etc) I can guarantee our insurance will t cover this
Excellent production and confirmation of what survivors can collectively do to warn others.
This is consistent with the huge influx of letters received by MindFreedom International. About fifty percent of the current, written correspondence to MindFreedom are pleas for advocacy, assistance, and referrals from prisoners in distress, many of whom are experiencing the rigors of isolation and solitary confinement, sometimes due to their sexual orientation. The stories are heart rendering and MindFreedom doesn’t have the capacity to answer each and every letter.
It’s a tiny study but a good start. I want to commend the people who conducted this study, as well as the FEMHC for funding it. I’m thrilled that it was published. Praying that more and bigger studies in this vein will be funded in the future and that the body of data will grow until it becomes incontrovertible proof that the current paradigm of mental health needs to dramatically shift. Tens of thousands of individuals lives are at stake.
I’m ready to lobby the legislature in my state for creating new data reporting requirements and guidelines as it concerns funding and resources for people who want to safely withdraw from psych drugs. We don’t have the data I we need to make the case that we are driving up the cost of mental health services in the long run,, but we need whatever data we can get at this stage, for instance, what percentage of every states Medicaid budget goes towards mental health and more specifically, what percentage of MH dollars a goes towards drugs? I know what the pushback will be in budget strapped states. To make the case, we need a starting place. The VA has some pretty good data. Approximately.12% of the VA’s budget now goes directly to pay for drugs
Andy: Congratulations for weaning off a very powerful drug. I’m sorry to you are experiencing protracted inability to experience emotions. Hopefully, in time you will feel like yourself again. Thanks for sharing
I couldn’t agree with you more. Informed consent needs an overhaul, starting with an educational component, and it should be mandatory to watch a video of someone with tardive dyskinisia and the video should be produced by psych survivors and their allies, not the drug manufacturers. This should be mandatory. At least clozapine has a registry, unlike all the other typical and atypical neurloleptics. We need better long term tracking of the individuals who are forced to take these powerful drugs who haven’t had the benefit of learning the potential, long term harm they could suffer.
My daughter is on this drug and thankfully her doctor has incrementally tapered her dose to about 1/4 of the dosage she was originally prescribed. She is doing much better now physically and dealing with a lot of the repressed emotions that she couldn’t experience while being emotionally lobotomized.
I hope she can be safely weaned off this drug completely without having to deal with lingering, protracted withdrawal effects or suffer a major relapse. She has worked so hard to get here.
Thankfully, severe constipation wasn’t one of her side effects. But she had other horrible side effects, including incontinence, recurrent boils on her skin, jaw pain, vomiting, drooling, pin prick pains which I assume is called neuropathy, emotional numbing, extreme sedation (sleeping for sixteen hours a day) and headaches.
I would give this drug and many others in the same category a big thumbs down. Hearing voices support group, liberty, employment, swimming, yoga, and mindfulness training have been much more helpful than these drugs with zero side effects.
The algorithm referred to in this article makes it out to be more elegant than it really is. It has nothing to do with computers. Presribing algorithms are nothing more than charts of unbelievable simplicity developed by drug companies with no scientific merit whatsoever. They would be more aptly named ‘Psychiatry for Dummies’. If you saw the playbook used by some psychiatrists, a practice condoned by their guild, you would be stunned by the colossal waste of spending four years at medical college for anyone who bases his/her practice on following anything as ridiculous as a prescribing algorithm authored by a drug manufacturer. I’m embarrassed just thinking about it. An auto mechanic and a plumber has more integrity.
Bonnie, well stated
Bramble, can you please cite your source for half of all shock in the U.S. is by force? I have not been able to find any solid data on the population of involuntarily shocked people in the U.S. It seems shrouded in secrecy and I would like to distribute this data to other activists. Thanks.
Thanks for writing this. I am going to send a copy of your article to the resident psychiatrist of the private hospital where my daughter was admitted over five years ago. That doctor wanted to shock her out of catatonia. Our daughter audibly said “no” to the Director of Medical Ethics who sat by her bedside and patiently interviewed her. She has a long recovery road ahead of her after years of toxic drugging but thankfully, she didn’t get permanent brain damage from shock.
This is an incredible story on many levels. Thank you for sharing. I hope you find a wider audience for your story outside this community. Other parents like me need a campfire where we are able hear the stories of psychiatric survivors, especially the ones that don’t get published in the mainstream media, so we can weigh and sift, until we are able to connect the dots to our own families, rediscovering our children from underneath the pile of labels that they have been given.
Underneath all of the hopelessness, fear, and despair, our children are still the wonderful people that they have always been, but many of them have been living a lie for years, developing a pattern of evasion, misleading and lying to counselors, friends, and doctors, disguising their real problems, secretly nursing the hurt of their institutional betrayal, terrified that they will be locked up, restrained, forcibly injected, or shocked, if they make the smallest of mistakes.
Many of our children do not identify with their labels but if an individual seek alternatives or rejects psychiatric treatment the stigma is overwhelming.
A psychiatrist recommended that my 20 year old receive ECT as she lay helpless and catatonic in a hospital bed. Terrified, I sought for legal protection, only to learn that people considered to be severely mentally ill have no legal rights. The Director of medical ethics at her hospital took the time to sit beside my daughter’s bed and patiently explain what was at stake and she was able to elicit a simple verbal ‘NO’, which thankfully, was enough to make the psychiatrist back off.
But the experience of her dodging ECT was a wake-up call to me. We parents have to awaken from our collective stupor and shout loudly with our children: “No more harm!” We need to organize for choices and alternatives and better parent education than what is currently offered by NAMI.
Since my creative, loving, and attractive daughter was diagnosed with schizoaffective disorder, she has been receiving psychiatric treatment for eight years, often by force. It is very hard to distinguish between her original trauma, the psychological trauma of having her rights taken away, and the side effects of her court ordered drugging.
She is slowly tapering off the medication and seeking alternative treatment modalities such as a monthly ‘hearing voices’ support group and Icarus Project. Differentiating between withdrawal symptoms, post traumatic flashbacks from psychiatric abuse, and her original trauma continues to be a challenge but hearing these stories helps a lot!
Every day brings new opportunities for healing and I am grateful that she is getting more appropriate treatment. But still, there are more questions than answers.
I am very skeptical of claims that people positing that there are no organic contributing factors to ‘mental illness.’ I want to be in solidarity with all psychiatric survivors but this seems unrealistic given the range of views on this site.
I don’t want to invalidate my daughters experiences, even the ones she has trouble describing. If I say to myself her so called symptoms are simply the result of her being gas-lighted or that there is no such things as ‘normal’ then I am closed to the possibility that she needs help dealing with profound handicaps having to do with faulty perceptions, feelings, and thinking. If I say that she has an organic ‘disease’ than I am at risk of invalidating her trauma and all of the painful circumstances that contributed to her present state, which is even more complicated, because once she was started on neuroleptics she exhibited new psychiatric symptoms, so one has to constantly question the loved one’s behavior and what is the origin and what does it mean? And that doesn’t even include the spiritual model!
This essay confirms what many parents are starting to suspect, that problems having to do with their child’s perceptions, feelings, and thinking may be associated more with trauma more than they previously wanted to admit. Moreover, it validates what more and more parents are starting to think, that under the medical disease-centered model of mental illness, the ‘experts’ know next to nothing about how to support people in distress who are trauma survivors; indeed, from my daughter’s experience, psychiatrists seem more expert at compounding trauma with stigmatizing labels, hopeless messages about broken brains, forced injections, restraints, and the threat of institutionalization.
But what this essay does in spades is that it suggests that we need not throw out the baby with the bathwater by claiming that there are no biological contributors to mental wellness/illness.
Boutique studies like this one regarding inflammation as a possible etiology for ‘schizophrenia’ filtered down to the clinics five years ago and now patients routinely wash down their daily cocktails of neuroleptics, benzodiazapines, SSRI’s, and mood stabilizers with a fat Omega 3 fish oil tablet.
The same thing will happen with copper and zinc pills if these studies filter down to the community mental health clinics. If they’re cheap enough, docs will throw anything into the mix. That way docs who exercise complimentary, nutritional approaches while dispensing the standard neuro toxins, can appear as ‘open minded’ when in reality, they will continue to hold the greatest contempt for professionals in the field of nutrition, orthomolecular or naturopathic medicine and virtually anyone who challenges their authority.
Frank Blankenship is right. Release the inmates, then talk about nutrition, but before you empty out these places, identify those inmates whose toxic cocktails resulted in uncharacteristic violent or criminal behavior, akathesia, aggression, etc. pay them a small fortune in return for the suffering and loss to their reputation.
Yes, food in institutions suck. It’s full of gluten, dairy, high in carbohydrates like sugar, artificial preservatives, and most of the meals are prepared from highly processed, reheated frozen and canned ingredients. Ironically, soda pop is used as a behavioral ‘incentive’ at some of these dumps. But the nutrition piece seems to pale in comparison to the psychological torture of being medically kidnapped, deprived of one’s privacy and liberty, denied access to fresh air, and sunshine. And that is not counting restraint, seclusion, forced injections, and ECT.
My daughter, a country girl, who loves nothing better than walking barefoot and swimming in the creek, was forced to live for several years in a large concrete box surrounded by barbed wire. Her exposure to nature was limited to watching Animal Planet on TV and her company was limited for months on end to people in various states of distress, screaming, crawling, crying, or shuffling back and forth in slippers and bathrobes, while nurses peer out from behind bullet proof windows . For stimulation, she was herded around to activities such as ‘art class’ where full grown adults, some of whom had advance degrees, were given coloring books and crayons and told to ‘color’, where patients could play a broken piano, in a urine stained ‘music room.’
With the ‘Cures’ bill calling for more beds in facilities like this, I think nutrition is the least of our worries but anything that helps without hurting is a worthy project.
Great news! Thanks for sharing! This roll out should be successful and I anticipate this project will expand the MIA audience significantly because of the good design and planning.
In particular, I like that it builds on existing radio shows and considers them as affiliates, not competitors. Don’t forget to invite MindFreedom International which has a very rich archive of interviews featuring experts from Dr. Peter Breggin to Dr. Laura Tenney on its web radio show. MFI’s radio show hasn’t been active since David Oaks’ retirement from MFI but the archive of recorded interviews is stunning in it’s breadth and quality.
Steve: I agree with you partially but I think it gets even more complicated than what you suggest. Not everyone metabolizes drugs at the same rate and individuals who are self medicating the side effects of their drugs with other substances such as nicotine, may be affecting the metabolism of their prescription drugs even more, making them build up to toxic levels in their bloodstream or rendering them ‘sub-therapeutic.’ Once again, it goes to the heart of why are we court ordering people to take neurotoxins when we know so little about how they will affect people, who may have a near infinite number of responses. When you consider polypharmacy, which isn’t even tested for safety, it gets even more complicated If I was convinced that psychiatrists and other prescribers actually listened to their patients and would take into account individual differences and would take the time to get to know their patients and build a trusting relationship with them, then it would make sense to talk about dosages. But even questioning the dosage with a prescriber is not necessarily a safe option for some individuals. Questioning the dosage may result in another psychiatric diagnosis such as personality disorder, being oppositional, having anosognosia, etc.
Steve, this goes to the heart of the question, why have professionals in the field of mental health in the first place? Why not teach regular people like me practical skills like non violent communication and emotional CPR?
I think professionals fool themselves into thinking they can remain objective while struggling to meet the standards of conduct dictated by their
I think the best qualities that any caregiver or treatment provider can bring to the table for people in distress: a sense of curiosity, an ability to suspend judgement, and the ability to maintain perspective. I’m not sure how much of this professionals can learn in school. In fact, many of these qualities may actually be considered suspect and individuals who exhibit such qualities may actually flunk or wash out.
When Dr. Mosher established the Soteria house, they experienced enormous success by hiring staff who did not have training in psychology and other traditional precursors to counseling. That having been said, I do regularly seek the services of therapists and counselors.
Then again, it occurs to me, what harm is it really, if a care receiver emotionally nurses a caregiver at times? Isn’t this the normal give and take of people in relationships? Why would we expect that a person, even one in the deep throes of distress, is incapable of emotionally supporting and/or nurturing others?
A person who is already reeling from a lack of identity an a severely battered self esteem stemming from the “ceremony of degradation”–not sure who gets the credit for that term–represented by psychiatric diagnosis and psychiatric harm–may actually benefit from such a dynamic. People who have the resilience to rebound emotionally from the harm inflicted by them by well intended treatment providers and family caregivers have an amazing ability to offer appropriate insight and emotional support to other non-psychiatrized individuals. It may well be that such a role reversal from care receiver to care giver is the means to find the ‘way back home.’
This summary was not written for a layperson. I was searching for the ‘nugget’ in the hopes that there is some take away from this study that could be applied to my own situation with my daughter, especially because as Steve McCrea pointed out, caregivers can inadvertently cause a role reversal in which care receivers must nurse the caregivers emotionally)
My frustration with this summary is that the nomenclature used is not the language of real life. Don’s comment captured the spirit of frustration I feel around this study because it was based on fictional relationships. The heavy use psycho babble made it inaccessible.
For family members who are caregivers for a loved one in distress, what are real-life techniques for avoiding compounding the distress felt by a loved one? Not sure if this study offers anything practical to the body of knowledge already in existence, such as that accrued, as Don points out to the efficacy of peer support.
We were told by our daughter’s social worker that our daughter had a disease like diabetes and would have to take meds for life. We were also told she needed ECT. She was civilly committed eight times, forcibly drugged, restrained, and institutionalized for eight years but we never gave up hope that with compassion and solidarity and empowerment she would come through the other side.
By a stroke of good luck a board certified psychiatrist who is smart enough to question the industry funded data of his profession and who is too young to be cynical is in charge of her outpatient treatment now. He uses accupuncture, prescribes dietary supplements, and is cautiously tapering her.drugs down. He also listens and his very compassionate. She is now on a fraction of the original dose she was on when she moved back home, does volunteer work in the community, gardens, pursues art, music, and yoga.
She is doing very well. The drug induced akathesia and other adverse drug reactions she was experiencing for years went unrecognized. She knew all along that the drugs she was forced to take for years were themselves causing psychiatric symptoms, immobilizing her socially, cognitively, and physically, forcing her deeper and deeper into her own world, perceiving odd thoughts she could not articulate.
She is finally starting to climb out of this drug induced prison. We are are somewhat adjusted to the fact that she may never receive any restorative justice for the violation of her rights when she was forcibly treated, and for the iatrogenic harm.
My biggest regret is that we don’t have the means to support dozens of people like our daughter, providing sanctuary for individuals who need care and support while withdrawing from harmful psychiatric drugs. There are hundreds of thousands of people out there who need love and support not major tranquilizers. What are we going to do?
Rossa, thanks for the kind words and advise. I think I see your point in the futility of finding someone helpful in the ‘system’
Being’off the grid’ in the sense of being emancipated from psychiatric services and other services which are paid for by the state is in itself a sign of recovery, leaving individuals and families more time to pursue those creative people and living communities that promote health and wellness through connectedness and community building because after all, isn’t that what we are all searching for?
After nearly seven years of conversations with my daughter, you are correct about “recurring themes” becoming apparent. Many of them have emotional force behind them. We’ve learned that the paradoxical nature of the medications is that they actually make it harder, not easier for people to process strong emotions. As my daughter’s current psychiatrist lowered her medications to a fraction of previous levels, and she was given the liberty to move into her own place, as opposed to a secure psychiatric facility or a foster home, the energy required for her to be heard has diminished and the emotional force behind her symbols has gone from roaring to chatty. The symbols and the patterns are easier to discern when the conversation is calm and I think that more and more parents are starting to understand the paradoxical nature of medications and that for many, they create more problems than they solve.
I’m convinced that much of the behavior that gets labeled as ‘psychosis’ when people are locked up goes hand-in-hand with the tremendous effort it takes to being heard ‘Psychotic rage’ seems to me to be some individuals trying to force other people to listen to them. And then there are adverse reactions to medication that we are only starting to honestly deal with.
Clearly, some people are practiced in the art of deafness and mental health professionals in particular even get rewarded for their deafness by appearing to be more distant and ‘professional’. As parents, we don’t have the burden of the professional who aspires to be right, just the knowledge of the joy that awaits our family when our daughter is restored to good health and vitality and purpose.
Anyway, this was an interesting blog and I’m encouraged to see at least one clinical director is lamenting that something is missing from his profession.
Mary, I just got the reference to Harry Potter and had a good laugh out loud. Thanks!!!
Mary, I consciously try not to ‘nod out’ or ‘blank out’ when she has expresses a stream of consciousness but there is so much information that my brain is simply not capable of processing it all. If I were a genius or professionally trained to filter the information based on a legitimate framework or reference I muse that I may be more helpful. But alas, my brain is slow and the most I can do at times is consciously work at not judging because I tend to be very critical.
There is so much information coming from her, that I can’t even memorize it to recount it to someone is a genius or better trained than I. Since her dad is a poet and a songwriter/musician, his interactions with her seems more punctuated with joy than mine. I hear them laughing a lot in the other room, singing, rapping, drumming, playing the piano together, etc. and sometimes they try to ‘outpun’ one another. But I don’t have my husband’s creative gifts so that window is not available to me. My focus is to get my daughter to stay clean, have good hygiene, get out when possible to socialize and volunteer in the community, and help her wean safely off the medications that make it difficult to do all of the above.
I think there is a lot of hope in our situation, we have very helpful friends and extended family members and I can’t count our many blessings but it would be nice if we could trust someone in the ‘system’ to hear every family members story, provide some insight and encouragement on a regular basis and support our daughter’s desire to live a med free existence. It seems that the medical or disease model has filtered down to the rank and file of every professional in the ‘system’.
Thanks Sam and Mary. My daughter is really well read and cites a lot of books I haven’t read. I will look up the books you recommend. If you think of any other books, please let me know.
I think the question to ask is, can psychoanalysis treat psychiatry? It has an extremely big shadow
Kudos to you for trying to change the system from within. I am very keen for my daughter to find a therapist like you or a shamanic practitioner who will take the time (years, if necessary) to help our beloved daughter sort out all of the symbols of her visions and dreams (she experiences her dreams while awake) and help her lay the groundwork for living daily in consensual reality, a place which isn’t really all that bad, after one has learned to put even the bad things that are out of one’s control into perspective.
She is a very attractive, intelligent and expressive individual, cherished, creative, and well loved but we don’t yet have a shared language or vocabulary to navigate through this world together and her father and I don’t have any training in psychology or Jungian theory, or process work, so our daughter keeps conveying information to two people who have no idea how to process it! There are very few non medical model resources and trainings for parents like us who want to remain in solidarity with our loved one, not negate her experiences, including the extreme states labeled as ‘psychosis’ and there are even fewer practitioners who use the approaches you described.
Her father and I seem to be the only consistent walls against which she can bounce her ideas and thoughts, People who are stuck in the mental health system, on average, move around from hospital to foster home to psychiatric facility every six months and with every ‘relapse’ the cycle starts over. With every move, diagnosed individuals are assigned a new set of medical industrial contractors, each contractor embraces his/her pet theory or framework, and each must start anew to hear her evolving story, a time consuming task that many dispense with, in favor of fifteen minute ‘med-checks’. Since mental health care workers who work in an industry that is rife with high turnover and burn-out, sometimes a particularly sympathetic counselor will take the time to listen to her story but they disappear professionally on short notice. Now, she is home at last and I hope we can establish some continuity.
Moreover, the ‘therapeutic alliance’ we heard was the foundation of good therapy was severely damaged during her first ‘break’ from reality in which she was forcibly injected, restrained, and institutionalized though she was no threat to herself or others. Hardly an auspicious start for anyone to ‘share their story’ no matter how sympathetic a psychiatrist may be. A person in your profession should be aware of the impact that psychiatric abuse has on individuals.
For years, we have tried to remain sympathetic with our daughter’s voices and visions, and we try to cultivate curiosity, and we strain to avoid being judgmental or pathologizing even if she gives voice to some offensive, taboo ideas, which is quite often. For years, we have been receptacles for an enormous amount of information that she conveys to us nearly on a daily basis (except on the days when the drugs her brain is habituated to cause her to remain for hours on end in bed). Sometimes she convey these strange visions and dreams with great emotion, sometimes without emotion.
Her unusual beliefs which the medical system calls delusions are often quite poignant and harmless. She often thanks me if I “humor her” (her word, not mine) by talking about her symbols sympathetically without judgement.There are delightful times when her poetical expressions are very pleasant, sometimes she is a mixed media artist, combining sound, mime, music, and story telling. Sometimes she is an enigma, using silence and humor to shake up our entire household, so much so that I did some research on court jesters. Did you know that the last documented court jester in the English Court was in the late 1700’s? The demise of the court jesters roughly corresponded with the Age of Enlightenment.
And of course, she often expresses unpleasant but insightful truths about our family dynamics, that incite strong emotional push back from other family members, but strangely facilitate all kinds of healing in the most unexpected, unorthodox ways.
If our ‘mad’ daughter had a purpose in society, she would not be so lonely and our society might give her an opportunity to live freely without fear of being institutionalized, forcibly medicated. I think we need to repurpose madness from being a ‘drain’ on society to a condition experienced sometimes by some people to keep the mighty from being too mighty.
That would be horrific if his son committed suicide. And I think you should reconsider your comment, otherwise, I or someone else contributing to this discussion may be inclined to report your comment because it implies a callousness that I’m sure you didn’t intend to imply. I like to think that Pete Earley, like most parents, would give anything in this world to have his son be vibrant, healthy, independent, safe, and happy and that he would be glad to admit publicly that his public embrace of the disease model may be in error. Please beware of the impact of your words. (-:
I am glad you mention South Africa. Nelson Mandela’s miraculous rise from prisoner to prime minister is a constant source of inspiration, especially when I feel hopeless thinking about the discrimination and enormous abuses of power within the mental health system.
I agree with everything you said, including the point about the trauma experienced by powerful and wealthy CEO’s and doctors.
Keeping it to NAMI, a organization that is distinctly different from other consumer advocacy organizations because it is led by family members, not consumer/survivors, is NAMI redeemable? If not, we need a place for disenchanted NAMI members to migrate to, one in which the voices of survivors are valued alongside the voices of traumatized family members.
NAMI’ astonishing support of forced treatment in regards to the CURES Bill should send shivers down the spine of any parents who are beginning to question the disease model of ‘mental illness’ or more importantly, parents who have witnessed the dramatic decline in health and vitality of a cherished son or daughter after he/she received years and years of standard psychiatric treatment.
The trauma of psychiatric abuse is different from the trauma of someone who is witnessing it. Being on the sharp end of the needle, so to speak, is a world away from empathizing with one who is, but there are some overlapping places where both the psychiatrically abused as well as the witnesses may come together.
For instance both the abused and the observer may both feel powerless at times, to stop psychiatric abuse on an individual level or on a policy level. Both parties may feel that it is hopeless to seek restorative justice for past harm or discrimination under the current paradigm. Both parties may have experienced being ignored, dismissed, ridiculed, or worse, become the target of retribution for attempting to speak truth to power within the mental health system.
If we are indeed starting to turn the corner as a society and change the paradigm of mental health care, and more specifically, if NAMI is going to maintain any shred of legitimacy as a “consumer ‘ advocacy organization, then several dialogues have to bear fruit. One important dialogue involves two disparate audiences within the NAMI community.
The first subset or audience is characterized by Pete Early and parents like him. These folks stand behind the legitimacy of the DSM and are OK with the disease model of mental illness. They identify with the diagnosis of their loved one and their main beef with the mental health system is not psychiatric abuse but psychiatric neglect. In other words, those who feel that there are not enough services for the ‘mentally ill’ in general and they do not see much of a problem with bad outcomes, dehumanizing or disempowering treatment, and iatrogenic harm.
The second subset of family members are people like myself. We are intensely dissatisfied with the lack of choice and alternatives in the mental health system and we decry the fact that individuals who do not embrace the disease model or large chunks of it, encounter a ‘love it or leave it’ attitude by mental health care providers. We are outraged by the lack of quality data and the economic and corruptive forces at play in mental health research.
Since there is relatively little data on this, I don’t know how big each audience is. I feel like I am in the minority when I attend NAMI type events but it’s hard to say for sure. I do get the sense that things are changing but the changes I observe are coming from younger professionals just graduating or entering the field of mental health and parents whose children are just starting to receive psychiatric care, not those who have been in the system for decades.
I think direct action against NAMI national is warranted if only to shine national media spotlight on NAMI and warn the newer generation of parents about the dangers of building their entire support network around an industry progaganda mouthpiece and the risk of prematurely adopting the disease model in regards to a loved one’s crisis.
Thanks for starting this dialogue which needs to spread to the community of users/allies outside this community. To have a dialogue, you need participants who are willing to self-reflect and re-open old wounds. You need facilitators who know the depth of pain felt by family members of consumers/survivors. The leadership of NAMI has proven itself to be extraordinarily unable to self reflect, as demonstrated by their yanking an invitation for Robert Whitaker to speak at their annual conference and the blow-back from parents like Pete Earley when this invitation was re-issued.
Individuals experiencing trauma are vulnerable to exploitation. The parents who started NAMI are no exception to this. Parents have been traumatized, right alongside their diagnosed loved one. They have driven around big cities searching for their loved one at three in the morning. They have mobilized extended family members in a sweep, searching for someone among garbage dumps, waterfronts, and seedy bars. They have received calls from jails at four in the morning or lain in bed on countless nights waiting for that call. They have swept up shards of glass and literally put out household fires. They have filed missing person reports and called every hospital in a three county swath searching desperately for someone their heart aches for. They have logged countless hours visiting their cherished one in mental hospitals while secretly longing for an opportunity to punch that staff member who was unctuous, patronizing, or dismissive. They have witnessed their loved one restrained, forcibly injected, and isolated and they were enraged and crushed at the ugliness of psychiatric force and coercion and they wept at their powerlessness. They have prayed until they begin to doubt the existence of a compassionate Creator.
Big Pharma and the APA swooped down to NAMI in its infancy and exploited this desperate population of family members. They floated lies to parents about miracle chemical cures. And parents, exhausted and traumatized went for the lie. Rather than helping parents take responsibility for their anger, grief, and fear and finding a way to keep the lines of communication open with their diagnosed loved ones, NAMI offers an easier route: seeking the magic pill solution that would require no further blood, sweat, and tears. Offering stability over recovery.
I see that one ally, Sam, above noted that he had to take responsibility for his anger before he could support his wife’s recovery. NAMI does not teach family members to take responsibility for their own sh*t. What they do provide is milk and cookies for family members and a roof under which people can experience fellowship after years of shame and stigma. NAMI should teach that recovery is a joint venture and that individuals in a community can remain in solidarity with someone who is experiencing extreme states. But the fear experienced by parents is overwhelming. Setting the bar low is a long process that happens incrementally. The goal becomes to have few run-ins with the legal and medical system, even when court ordered treatment becomes a reality and the ‘therapeutic alliance’ is broken beyond repair. Regaining control or maintaining control becomes, by default, the new goal, not recovery. Stability is the new mecca, not harmony, not joy. A dread of going backwards and re-experiencing the worst that life has to offer becomes a terrible portal that must be locked shut at all costs. Losing what little ground was gained from the most recent crisis resolution is the mantra.
If an individual can get dressed in the morning, be non-violent, and fix a sandwich, that is considered ‘recovery’ by some parents. No matter if that person is obese, diabetic, has gall bladder disease, tardive dyskinisia, etc. No matter if that loved one does not have any meaningful purpose in the larger community, no employment prospects, no friends, no romance, no adventure. At least they are alive. It’s a hollow victory to be sure. The longer a loved one has experienced psychiatric harm and coercion, the harder it becomes to keep hope alive and incrementally reverse the lowering of the bar. Kudos to those families who manage to reverse this tragic decline in standards, alone, with very few supports. They will not reverse this process with the help of NAMI. NAMI enables hopelessness or renders the standards of what constitutes recovery to be nearly meaningless.
I am a parent who attended (but later dropped out of) NAMI’s ‘Family-To-Family Educational Program.’ Participants like me were each given a Second Edition version of ‘Family to Family’ written by Joyce Burland Ph.D. National Director of the NAMI’s Family-to-Family Education Program. The study guide clearly states that the development and distribution of the materials was directly funded by an ‘unrestricted education grant from Bristol-Myers-Squibb and Otsuka American Pharmaceutical Inc.”
It was very traumatizing to read controversial medical propaganda in the packets we parents were given, such as a copy of a controversial article by Daniel Goldman providing ‘irrefutable proof” that schizophrenia is caused by structural abnormalities of the brain. No opportunities to discuss the validity of this junk science was provided to parents like me who have read articles refuting this evidence. No alternative treatment modalities were discussed and no paradigm other than the medical disease model were presented as the basis for diagnosing and treating extreme states known as ‘psychosis’
Educational alternatives are starting to crop up here and there. For example, parents can take a class entitled ‘Families Healing Together’ offered by the Foundation for Excellence in Mental Health, which stands in stark contrast to NAMI’s educational program. Educational approaches which stress recovery, hope, psycho-social approaches, and the role played by trauma, grief, and shame are infinitely more helpful but are in their infancy.
I think activists for human rights in the mental health system (as defined by choices and alternatives to the medical model because how can their be rights if there are no choices?) should target national and state NAMI organizations for direct action as David Oaks and other activists did when they fasted and called for the APA to provide proof that mental illness is caused by a chemical imbalance) and seek to build coalitions with other consumer advocacy organizations who, like us, do not accept industry funding. I hope MindFreedom affiliate organizations will take the lead in organizing such actions. Since MindFreedom is one of the few consumer/survivor organizations left standing which does not receive any ‘system’ funding, it think MindFreedom is uniquely positioned to lead this effort but it would be helpful if activists who working for organizations which do accept system funding would renew their MFI memberships and/or renew their commitment to direct action.
Dear Sera: This is a most interesting article on a really important topic. Thank you! One thing that struck me is your description of Mental Health of America which was originally founded by someone with lived experience and is now run by the father of someone with lived experience. Does this pattern also apply to the membership of the Board of Directors and staff? What about NAMI? Regardless, I think its high time we organize to create a accreditation process for so-called mental health advocacy organizations. One obvious criteria for certification would be more than 50% of the Board is made up by people with lived experience, and by that I mean people who have been on the sharp end of the needle. Another criteria would be funding sources. No organization receiving funds from big Pharma or other medical technology company could be a patient ‘advocacy’ organization. Consumer safety organizations would never allow such conflicts of interest. Why do we allow this astro turfing to take place in the field of mental health? Organic farmers banded together in Oregon during the seventies to form T.I.L.T.H., an national certification process for organic farmers? This took foresight. To this day, despite strong industry lobbying, marketing of organic food is strictly regulated by experts with integrity who embrace the stewardship of the earth, water, and soil as well as the safety of consumers as their highest mission. Why can’t we do the same and shame NAMI members into accepting that their advocacy organization is little more than a front for big Pharma and advocates for AOT such as Jaffe?
Uprising: Thanks for the kind words. There are many reasons to celebrate. Our family is together and our daughter is safe and loved.
I agree. There psychiatrists are not very courageous. They rarely cross or disagree with a colleague, rarely stick up for a patient that everyone else has given up on, rarely offer any overtures of restorative justice, such as to apologize for harm meted out by a colleague, rarely defy convention by assisting a patient wean herself off harmful meds, and they generally put maintaining their license, reducing their legal exposure, and their financial security ahead of the best interests of their patients.
Beautiful piece on hope. My adult daughter is home again at last and is making wonderful progress on all fronts. Seven years of institutionalization (bouncing from psychiatric facility to foster home to acute care hospital to state mental hospital back to psychiatric facility in an endless cycle) did not kill her hope or ours. But we have our challenges. In future, I hope you drill down even further into the mechanics of hope. How does a family member or a caregiver, untrained and uneducated but full of hope, coach or encourage a loved one without pushing them to do things that are uncomfortable, without being irritating or irrelevant?