Recently I had a chance to look at a review of DJ Jaffe’s new book, Insane Consequences: How the Mental Health Industry Fails the Mentally Ill. As can be expected, the book will meet with considerable blowback — for example, the title of the book using the long-outdated term “insane” will surely set some bells and whistles going.
But I found myself asking whether that is such a good thing considering the deep polarization, among many other dynamics, that is spreading almost like an illness through all of America these days and even contaminating views of us abroad as well.
The dispute that will be ignited further is one between the proponents of DJ Jaffe’s world and that of the “other side” — those who are equally dissatisfied with how the mental health system works because it does not respect the individuality of persons with major mental health challenges, and does not support the idea that people can recover, even those with the most damaging diagnoses such as “schizophrenia.” The latter group is one that is actually quite diverse and includes everyone from progressive members of the American Psychiatric Association (admittedly still a minority though a growing group) to the antipsychiatry advocates. There are numerous other advocates in between, including some longtime NAMI leaders who are speaking to the harm of conventional mental health treatment and pushing for many kinds of alternatives.
I began to reflect on my four decades of experience as a mental health commissioner, manager and clinician, and started to consider the possibility that all of us have been traumatized in some way by some very disruptive life experiences and a system that doesn’t respond very well in spite of many good intentions.
So, what if we tried viewing our angry differences through the lens of trauma dynamics? For those of us who have been extremely angry about NAMI and its current perspective, maybe we should stop asking “what’s wrong with you?” and ask, “what happened?”
When I began working with NAMI 30 years ago in a community mental health center, I was struck by the deeply traumatic experiences that family members had in trying to access effective crisis services when a loved one was highly agitated and threatening, or suicidally depressed, or hearing voices, or talking in a wildly confusing manner. It was extremely challenging to get support for this experience, let alone to cope with the aftermath of getting ongoing care, housing, financial resources or help with a return to school or work.
I knew something about this because my older brother was hospitalized in a psychiatric unit at UCLA in the 1960s due to severe anxiety attacks that left him unable to function in a challenging academic world. My parents reacted with anger and denial and fear of stigmatization by yanking him out of the hospital as soon as he stabilized on psychiatric medications. He never fully functioned again at the level his intellect would have allowed.
Most NAMI members have been responding, like my parents, with many of the “symptoms” of trauma — feelings of victimization, anger, depression, fear, denial and helplessness. NAMI provided a desperately needed cushion with the mutual support members gained from their monthly meetings and the beginnings of policy and political advocacy. But it also left a void, a kind of vulnerability to certain influences that for a variety of motivations promised answers and relief. Not all of these influences were motivated by pure altruism.
I am thinking specifically of the companionship that developed between the American Psychiatric Association and Big Pharma. I say this with some trepidation because of the risk of raising defensive hackles of many in the world that DJ Jaffe speaks to — and even some who want a different kind of radical change in the way we do this work. That is not my intent. In fact, I would very much like to see more real dialogue and less divisiveness.
There are more and more NAMI members, especially at local levels and even some at the national and state levels, who have become uncomfortable with that part of the NAMI perspective that still thinks in terms of lifelong chronicity. They are wanting more hope than that and recognize that words like “serious and persistent mental illness” don’t really capture the experience they or their loved ones have. In fact, the very idea that recovery isn’t possible can be a major obstacle to recovery itself.
One of my favorite stories that illustrates this was told to me by Dr. Dean Brooks, the legendary superintendent of Oregon State Hospital (for 27 years between 1955 and 1982), known to people all over the world as Dr. Spivey in the movie One Flew Over the Cuckoo’s Next. When he was in his 90s, Dr. Brooks’ family asked me to spend several hours with him every Friday morning for a number of months to get as many of his stories written as possible. Given my interests in the history of psychiatric medications, I asked him what he had thought of them when they were first introduced in the 1950s. He said that everyone had great hopes that they would be the answer that had been so elusive in helping people get discharged and return to normal lives in the community.
He said there was one patient that all the staff believed was hopeless, chronically mentally ill and would never be discharged. But he was placed on Thorazine anyway, and in six months, the staff came to Dr. Brooks and said that the medication had worked a miracle and they were now ready to start discharge planning. Being a hands-on and very curious superintendent, Dr. Brooks pulled the patient aside for a private chat and repeated the miracle story he’d heard from staff. The patient looked at him and confessed something very surprising — that he had been “cheeking the meds” the entire time. So Dr. Brooks asked himself, “Who are the meds for, the staff or the patients?” What this story speaks to is the power of belief in the capacity for all those with major mental health challenges to get better and move on with their lives.
Unfortunately, there are commercial interests that depend on chronicity for the massive profits they have made and continue to make on the sale of psychiatric medications. Just one example among many is this: a single child psychiatrist in Oregon prescribed $457,000 worth of antipsychotic medications to children and adolescents in just one year. It should be well known by now that psychiatric medications are among the most profitable in the industry.
This is not to say that all meds are wrong for every individual. But the unbiased research on outcomes with the use of these drugs are not well known to many NAMI members. And current and past leadership in the APA have been less than open to hearing about it. Fortunately, in a quieter segment of the APA, there is more willingness to look at a recovery perspective and the research that supports it.
There are an increasing number of well-crafted and unbiased analyses of the ways in which psychiatric medications are an obstacle to recovery for many people with mental health challenges. One of the problems has been to look into and beyond the publications funded and ghostwritten by the pharmaceutical corporations. A current case in point is the article co-authored by former APA President Jeffrey Lieberman about effectiveness and risks of antipsychotic drugs. Rather than go into the careful evaluation of the points made in the work, I suggest you find a quiet corner when you have time and honestly read Robert Whitaker’s report, “Psychiatry Defends Its Antipsychotics: A Case Study of Institutional Corruption” (and look beyond the title if at first it bothers you).
As I stated at the beginning of this blog, the last thing we need in the United States right now is further division. If there is any good that can come out of our political polarization, it is a recognition that it has gone far enough. We need to talk and act on our common dreams for people who are dealing with major mental health challenges. And we need to recognize that we have all been vulnerable to a retreat into extreme views from our respective traumas, to some degree.
So, what to do? I believe we can live without using the term “chronically mentally ill.” I recently spoke to a high school class and one of the students came up to me afterwards to thank me for the discussion of mental health issues, and introduced himself as having a chronic mental illness — he said he was “a schizophrenic.” Whether you agree or disagree about the diagnosis, wouldn’t it be better for people to think of themselves as someone with a positive future and not build their identity around an illness or a label?
Another suggestion is to bridge the information divide about programs that work — there is still not enough recognition of so-called “alternatives” like recovery-oriented approaches to acute care, Open Dialogue, Oregon’s Early Assessment Support Alliance (a statewide project that gives hope to nearly every young Oregonian and their families during a first psychotic episode), Soteria Houses, eCPR, Hearing Voices Network, a whole variety of peer supports and many others. Most of these kinds of programs employ a “selective use” model for using psychiatric medications. I believe that until we have a much more advanced psychosocial system of care, there will be a place for careful, mostly short-term use of psychiatric drugs. I may be wrong, but I’m going to be hopeful and do everything I can to promote these kinds of supports.
To sum things up, I think it’s high time for national, state and local leadership in family and peer circles to try dropping some defensiveness and make room for calm settings where similarities as well as differences can be talked over. And then we should move beyond polarization and get to work. Investigate and support organizations like the Foundation for Excellence in Mental Health Care that are promoting promising research, education and programs for recovery. There is so much more we could be doing if we stopped wasting time, resources and energy on non-productive arguing.
Thanks for the balanced post, as trauma is not adequately accounted for when speaking about mental distress. Many (probably most) of us who ended up in the system have histories of trauma – some quite extensive like mine.
Though I’d like to add that the mental health industry does not simply fail the mentally ill – it creates them. I would have struggled still without the meds and treatments, that’s for sure. But I would never have descended into complete madness and spent 15 years chronically mentally ill, in and out of institutions, without the assistance of SSRI-induced mania, anxiety and dissociation, and antipsychotic-induced akathesia. What about us? I’m starting to wonder about legal redress. Perhaps a class action for those of us literally poisoned by these so-called medications.
Robert,
this is a wonderful article…and yet how do we get people to see the necessity of it? It was extremely difficult and painful as I worked thru all the trauma that my wife’s d.i.d. had caused me over the course of the first 20 years of our marriage, but until I did that I was minimally able to enter her world and begin to help her heal. For me I remember thinking ‘one of has GOT to be the adult, and she simply can’t right now.’ And at that point I began to be the adult for both of us, slowly understanding the limitations that her d.i.d. caused, which helped me understand her inabilities to be a full partner in our relationship until she was fully healed.
Anger is such a huge issue. Until I dealt with my own, I was powerless to enter my wife’s world. And I see so much seething rage on both sides of the political/cultural wars in our country and so little attempts to find the common ground you talk of.
I hope others can hear your message and not react to the past trauma they have suffered. Your perspective on how NAMI got to it’s present state is worth considering instead of seeing them as part of the ‘evil empire’ to be fought.
Sam
I absolutely agree, lying to patients and their families, claiming that a person has a “life long, incurable genetic disease,” especially since there is zero proof that any of the DSM disorders are genetic illnesses, or even scientifically valid diseases, is quite inappropriate, unethical, and down right depressing if you buy into the lie.
I was fortunate not to believe the gas lighting attempts, since I had no “genetic” history of “mental illness” in my family, but my husband bought the lie, and this destroyed our marital relations.
Absolutely, I agree, it’s time to get rid of the term “chronically mentally ill.” Actually, since it’s been confessed by the former head of NIMH that none of the DSM disorders are scientifically valid disease entities, it’s also past time to get rid of all the DSM stigmatizations/billing codes. Especially now that it’s known that the DSM is likely primarily a classification system of the iatrogenic illnesses created with the psychiatric drugs, rather than being a legitimate classification system of genetic “mental illnesses.”
The ADHD drugs and antidepressants can create what appears to the doctors to be the “bipolar” and “schizophrenia” symptoms. And the “bipolar” and “schizophrenia” drugs and drug cocktails can create what appears to the doctors to be both the negative and positive symptoms of “schizophrenia,” via what is actually neuroleptic induced deficit syndrome and anticholinergic toxidrome. It’s a shame the “mental health professionals” are largely ignorant of these facts, since these psychiatric drug induced illnesses are conveniently not listed in their scientifically invalid DSM “bible.”
Truly, the “mental health professionals” I dealt with were both the most delusional and the most violent people I’ve ever personally met. But I suppose you can’t convince a sane person they are insane without acting completely insane and violent yourself. But how long should such an insane and violent industry be perpetuated? I know it’s profitable to create “mental illnesses” in people to “manage,” but doing such is morally repugnant and staggeringly hypocritical for a doctor also. Gas lighting people is “mental abuse,” not “mental health care,” too.
But at least today’s “mental healthcare professionals” are aiding and abetting millions of child molesters by covering up child abuse en mass. According to their own medical literature, “92% of borderline patients and 82% of affective or psychotic disorder patients” are actually child abuse victims, as opposed to being people with brain diseases, at least prior to being drugged. Oh, that’s illegal behavior by today’s “mental healthcare professionals.” Perhaps it’s time for the “mental healthcare professionals” to get out of the business of covering up child abuse en mass?
Long term drugging of healthy people causing disability is not profitable for our society. Nor is it even sustainable. But selfish, greedy people are usually short-sighted.
A bunch of expensive drugs for people who often don’t want them, salaries for the abusive charlatans and their cohorts cost a lot, and then it costs close to $9,000 a year to care for the forcibly disabled and a bunch of other stuff.
The tax payer is left holding the bill. Unfortunately the MI are blamed rather than the industry that created them.
I’m afraid I’m going to have to interject a sour note into this beautiful music you would be making. It concerns an illusion embedded in the title of D. J. Jaffe’s book, Insane Consequences: How the Mental Health Industry Fails the Mentally Ill, that you, apparently, share with him. It is NOT a “mental health” industry, it IS a “mental illness” industry. Many of the people most active on this website are employed by this “mental illness” industry, and are actively working on its expansion, with disastrous consequences. My hope is always completely beyond, and outside of, that “mental illness” industry. You mention a high school student coming up to you and introducing himself as a “chronic schizophrenic”. I wouldn’t regard it as a great improvement if this high school student had been introduced to the “pe-ah” movement, now or later, and referred to himself as a “chronic schizophrenic in recovery”, and did so for the remaining 40 or so years of his life, because he would not be likely, as a “user/consumer” (i.e. compliant mental patient), to live much longer than that. Polarization isn’t the problem as I see it. The problem is the “mental illness” industry that so many of you are infatuated with, and in that regard, concurrence, agreement, going along with ‘the band’, only adds to the problem as it is not part of the solution.
It would depend on how he was being treated. You’d probably be right at least 90% of the time, but there are actually potentially important things about diet, (psycho?)chemical exposure, especially drugs, supplements, exercise, etc., about which the disperceptive should be aware. Then he’d likely stay alive, because nobody “had” to make and/or keep him a zombie.
Thank you for promoting civil dialogue among critics of “mental health care” and forty years of service to the community. While I agree that deep polarization is harming our country, I respectfully disagree with a basic assumption of your article. Although you describe most critics on the “other side” of DJ Jaffe’s world, a large number of critics have a more fundamental, theoretical criticism of psychiatry. Many critics contend that psychiatry addresses social welfare problems and thus lacks any validity as a medical science. They contend that it significantly harms community “mental health” to treat the social welfare problems of the disenfranchised (“problems with living”) as if addressing diseases. More to the point, many critics contend that the legitimacy of psychiatry and its concept of “mental illness” is the main problem with “mental health care.”
Best wishes, Steve
The problem with this argument, which I essentially agree with, is that the financial conflicts of interest in the “mental illness industry” (thanks, Frank!) make a rational dialogue difficult if not impossible. Add on how the “biological brain disease” story helps parents, teachers, and other adults absolve themselves from responsibility for kids’ and adult children’s suffering and the task seems monumental. It’s difficult to imagine having a rational conversation with Lieberman or Jaffe about any of these issues, and until they are no longer funded by Big Pharma, it will be an enormous uphill battle. Perhaps the proper focus is to provide more support to parents of children/adults experiencing extreme states or other emotional distress and provide some kind of alternative to NAMI. It seems disheartening to think about.
Steve, as always you try to find the positive without ignoring the negatives. Yes, avarice, will make it nearly impossible to turn Big Pharma, but I think there would be more, how many I don’t know, families out there who would be open to other possibilities if they were simply given a choice.
Attachment theory works! I almost laughed when Robert wrote “even those with the most damaging diagnoses such as “schizophrenia.” For those of us in the world of d.i.d. I would love to have simply faced schizophrenia, but the fact is, someone with d.i.d. often has a long string of ‘co-morbidities’ because each ‘alter’ on his/her own only controls part of the person’s mental/emotional faculties and so EVERY alter has his/her own ‘disorders’. So I’ve had to help my wife through it all, and though I used other concepts like neural plasticity, it was attachment theory that was the bedrock for everything I did to help her thru the healing process without ANY medications or really any contact at all from mental health professionals (we do use an unlicensed ‘counselor’ who practices theophostics but she doesn’t really understand what I’m doing and so at this point she’s just a good friend and the only ‘real life’ friend the other girls will talk to outside me and our son).
Anyway, again, it’s not that I’m great or wonderful, but attachment theory WORKS; however, it goes so against our Western culture’s worship of independence and even our obsession with always being BUSY! And it also goes counter to our fears of being ‘co-dependent’ or ‘needy’. I’ve spent 9 years focusing on my wife’s healing, often just sitting on the couch with the various girls and holding them (or just being with the ones who at first didn’t feel safe with snuggling at first). The girls hear me often say, “Life was meant to be shared” and so whenever possible we do things together rather than simply be roommates with benefits like so many of the marriages I see around me. I actually LIKE to be with my wife and have built a life WITH her.
Anyway, attachment theory is a LIFESTYLE choice. Hollywood romances the idea of being ‘soul mates’ and yet in spite of my wife’s issues, in many ways she and I have become soul mates as we have implemented attachment theory…but as I’ve said before, in spite of blogging for 8 years of so on wordpress, I’ve found few people willing to do what I have done, sigh…sometimes I feel like I’m yelling ‘eureka’ in a vacuum because no one hears me…sigh…
Sam
Attachment theory also puts responsibility on the doorstep of the caretakers, while psychiatry blames the victims. That’s why a lot of abusive or neglectful parents, educators and “mental health professionals” prefer psychiatry – it lets them off the hook!
Properly done, attachment theory is a two-way street. In the beginning a LOT was on me, but as my wife healed it became more and more two-way. Even in the available literature, experts are studying how attachment theory works in romantic and adult relationships.
One of my favorite quotes by John Bowlby, father of attachment theory is this:
“Human beings of all ages are found to be at their happiest and to be able to deploy their talents to the best advantage when they are confident that, standing behind them, there are one or more trusted persons who will come to their aid should difficulties arise.”
edit: I do understand that you are correct and many abusive families are looking for an out, but even if it’s only 20-30% of the families who would be willing to do what our son and I have done, can you imagine how many people we could save from the mental health system if they knew what we learned?
Sam
You are so right, and if the psychiatric community would deal with reality instead of their financially-fueled fantasies, they could help route a LOT more families down the right road! That’s what I’m saying – not that families can’t face these facts, but that when given an easy path that lets them off the hook, it is very seductive. To help parents really understand attachment theory, it would mean helping them face their own attachment issues, which requires sensitivity and skill and compassion, which usually means the clinician has to face THEIR own attachment issues, which is painful and hard work. I still think many COULD do that work and WOULD do that work, but they aren’t required or even encouraged to, because the DSM provides them an easy out: it’s the client’s brain that is the problem, nobody has to deal with all this hard stuff. Most people take the path of least resistance unless they are prompted to do otherwise. That’s the worst effect of the DSM – it prevents real healing by letting people avoid their pain and instead pass it on to those who were harmed by their own mistakes or bad actions.
Dr. Quackenbush: It’s okay Mrs. NAMI Mommy! The science of psychiatry has conclusively and irrefutably proven that the mentally ill are evolutionary throw backs. Not your fault you gave birth to a monster. The fact that you beat your son repeatedly growing up, that you used him to get back at your ex, and emotionally abuse and manipulate him continually has nothing to do with his depression and paranoia.
In fact lies and manipulation are commendable because they help us give him the treatment he needs. Because his brain is broken he has no real feelings. And I’m sure the schizo was asking for it.
No, the mentally ill are evolutionary advances, which is why they have some immunity to cancer and diabetes (unless they’re medicated with psych drugs), plus being resistant to viruses and wound shock. It’s just that their advances are incomplete, being also found in their “sane” first-order relatives, without the confusion coming from being acutely ill.
Robert:
Thanks for starting this dialogue which needs to spread to the community of users/allies outside this community. To have a dialogue, you need participants who are willing to self-reflect and re-open old wounds. You need facilitators who know the depth of pain felt by family members of consumers/survivors. The leadership of NAMI has proven itself to be extraordinarily unable to self reflect, as demonstrated by their yanking an invitation for Robert Whitaker to speak at their annual conference and the blow-back from parents like Pete Earley when this invitation was re-issued.
Individuals experiencing trauma are vulnerable to exploitation. The parents who started NAMI are no exception to this. Parents have been traumatized, right alongside their diagnosed loved one. They have driven around big cities searching for their loved one at three in the morning. They have mobilized extended family members in a sweep, searching for someone among garbage dumps, waterfronts, and seedy bars. They have received calls from jails at four in the morning or lain in bed on countless nights waiting for that call. They have swept up shards of glass and literally put out household fires. They have filed missing person reports and called every hospital in a three county swath searching desperately for someone their heart aches for. They have logged countless hours visiting their cherished one in mental hospitals while secretly longing for an opportunity to punch that staff member who was unctuous, patronizing, or dismissive. They have witnessed their loved one restrained, forcibly injected, and isolated and they were enraged and crushed at the ugliness of psychiatric force and coercion and they wept at their powerlessness. They have prayed until they begin to doubt the existence of a compassionate Creator.
Big Pharma and the APA swooped down to NAMI in its infancy and exploited this desperate population of family members. They floated lies to parents about miracle chemical cures. And parents, exhausted and traumatized went for the lie. Rather than helping parents take responsibility for their anger, grief, and fear and finding a way to keep the lines of communication open with their diagnosed loved ones, NAMI offers an easier route: seeking the magic pill solution that would require no further blood, sweat, and tears. Offering stability over recovery.
I see that one ally, Sam, above noted that he had to take responsibility for his anger before he could support his wife’s recovery. NAMI does not teach family members to take responsibility for their own sh*t. What they do provide is milk and cookies for family members and a roof under which people can experience fellowship after years of shame and stigma. NAMI should teach that recovery is a joint venture and that individuals in a community can remain in solidarity with someone who is experiencing extreme states. But the fear experienced by parents is overwhelming. Setting the bar low is a long process that happens incrementally. The goal becomes to have few run-ins with the legal and medical system, even when court ordered treatment becomes a reality and the ‘therapeutic alliance’ is broken beyond repair. Regaining control or maintaining control becomes, by default, the new goal, not recovery. Stability is the new mecca, not harmony, not joy. A dread of going backwards and re-experiencing the worst that life has to offer becomes a terrible portal that must be locked shut at all costs. Losing what little ground was gained from the most recent crisis resolution is the mantra.
If an individual can get dressed in the morning, be non-violent, and fix a sandwich, that is considered ‘recovery’ by some parents. No matter if that person is obese, diabetic, has gall bladder disease, tardive dyskinisia, etc. No matter if that loved one does not have any meaningful purpose in the larger community, no employment prospects, no friends, no romance, no adventure. At least they are alive. It’s a hollow victory to be sure. The longer a loved one has experienced psychiatric harm and coercion, the harder it becomes to keep hope alive and incrementally reverse the lowering of the bar. Kudos to those families who manage to reverse this tragic decline in standards, alone, with very few supports. They will not reverse this process with the help of NAMI. NAMI enables hopelessness or renders the standards of what constitutes recovery to be nearly meaningless.
Thanks Madmom. You have described my family’s experience perfectly.
Wow Madmom you hit the proverbial nail on the head. Yes and to add- we live and probably have always lived in a world encircled by trauma. We have had the tools and analysis for this over time but it keeps getting lost or pushed down
Freud deals with it in his writings on anxiety. Right there- the words about a person coping with danger.
What you describe is almost like the process one goes through when one is taken hostage. And NAMI and professionals were- no doubt about it. The CEOs and others in the power cycle acted as offenders- the Pharma vacation package to docs like a rape walk by a sexual offender – check out what the lay of the land is
So how to get eyes and ears opened up?
How do get the offenders a juminy cricket and or a growing nose when lying?
Thanks to Robert for bring up a framework which allows dialogue too
I have struggled with my anger but am also aware resentment is the poison that kills you. Hate does not make great.
But one also has to experience the outrage and other feelings in order to walk through the wailing wall.
My guess and best bet is the CEO folks and others on the other side have unresolved trauma issues as well.
They used power tripping and money as coping mechanisms to the great loss of us all.
If South Africa can work towards betterment of atrocious times, if other countries can do so in fits / starts and Good progess – this should be doable. The trouble is human lives are being irrevocably damaged tonight on the wards, in the prisons, in the nursing homes and group homes where staff is mandated to act in ways they might not believe in.
And now more than ever there are restrictions in what can be done with activism.
There has to be something doable. I willl as always keep putting my thinking cap on.
Trauma usually only surfaces as a topic of discussion during and right after times of war. All the rest of the time trauma is pushed under the rug and trauma survivors are even pushed to the side and treated as if they were the cause of their problems. This is discussed in Dr. Judith Herman’s book Trauma and Recovery: The aftermath of violence–from domestic abuse to political terror.
Freud’s classical paper on Hysteria, about women sexual abuse survivors, was one of the first things to be written on trauma. It’s still valuable to read but it enraged the Victorians, especially in Vienna, because it stated that the women’s behavior was a direct result of the sexual abuse the women suffered at the hands of family members. The Victorians were having none of that, much like so many NAMI Mommies of today, and they attacked Freud to the point that he retracted almost every thing that he’d written on this particular subject; and then to placate the Victorians he came up with those strange ideas about how sons are attracted to their mothers and daughters to their fathers. Again, it’s not the fault of the parents that children have trauma, the kids are at fault. Isn’t it interesting that when we refuse to look at our history that we are bound to repeat it?
Trauma is not a popular topic of discussion.
Not all parents are responsible for the trauma their kids go through. There are bullies, extended family members, teachers and baby-sisters.
My brother and I were both traumatized as preschoolers by a Sunday school teacher who told her class we had to be good to avoid Hell. She also would tell us we were wicked. She didn’t say we were going to Hell in a direct way–but most of us could put two and two together at age 5.
Used to have nightmares of Hell up into my teens! My parents had no idea this was going on till years later. My brother and I thought this woman’s behavior was okay, so we never mentioned it. But he was scared of Hell too.
Even when it is the parents, it’s not always intentional. I had four surgeries as a child and my parents used to always tell me before hand that the doctors were going to put a mask on my face and I’d breathe the gas and it would put me to sleep. But I knew that when animals were “put to sleep”, they were actually killed. So I used to fight the anesthesiologists when they would attempt to give me the gas because I was certain they were done with me and sending me to die. Every time I awoke from surgery, I thought I must’ve gotten lucky or that God wasn’t ready for me yet so it hadn’t worked. My parents did a lot of bad stuff but they actually hadn’t intended for my medical treatment to be so traumatizing!
True, not all childhood trauma comes from horrible or abusive parents and both of you give great examples to support your point. But I do believe that NAMI gives truly abusive parents a way to escape from having to take responsibility for the damage they did to their children. NAMI could be a much more effective organization that could create much good if it dealt with the realities of real life in ways that promoted healing and well being.
My main interest in my comment was pointed more to how our society responds to trauma and how many times the trauma survivor is vilified for what happened to them. It’s sort of like “how dare you bring up this terrible topic that we don’t want to deal with or talk about!” Most of the time we stuff these terrible things down under the rug and we don’t want people talking about their experiences or issues. But we have to talk about them when thousands of armed services people come home and can’t function due to the trauma they endured in the places that they were posted to.
Hey Stephen, I completely agree with you on all of your points here – Just to be clear. My comment was merely piggybacking on the example given by FD.
Actually, what you describe has been exactly my experience. And I’ve been told by more than one person that I’m lying because a parent would never do some of the things I’ve described my parents doing. A lot of people are simply unwilling to believe that such abuses are even possible. And honestly, these have been the most damaging responses I’ve received from people. I’d almost rather someone thought I was delusional than think I’d make stuff up intentionally. But in any case, it’s a heinous way to respond to anyone that’s been through trauma to deny their experiences – whether war or abuse.
I bet Jaffee hired a ghost writer. From a recorded speech of his I read, he sounds incapable of writing a limerick.
He’s good at writing (and spreading) propaganda. Propaganda and literature are not usually the same thing.
Why don’t we dialogue with NAMI? Hmm. Did the NAACP dialogue with the KKK when Afro-Americans were trying to end segregation?
As long as we become obedient subjects of the Mental Illness Industry, take our poisons that maim and kill and live as outcasts in the ghettos where they tell us to and show proper gratitude, everything will be great. As far as Jaffee, the abusive parents and partners who run NAMI and the Mental Illness makers go. Many of us at MIA feel differently.
CatNight:
I am glad you mention South Africa. Nelson Mandela’s miraculous rise from prisoner to prime minister is a constant source of inspiration, especially when I feel hopeless thinking about the discrimination and enormous abuses of power within the mental health system.
I agree with everything you said, including the point about the trauma experienced by powerful and wealthy CEO’s and doctors.
Keeping it to NAMI, a organization that is distinctly different from other consumer advocacy organizations because it is led by family members, not consumer/survivors, is NAMI redeemable? If not, we need a place for disenchanted NAMI members to migrate to, one in which the voices of survivors are valued alongside the voices of traumatized family members.
NAMI’ astonishing support of forced treatment in regards to the CURES Bill should send shivers down the spine of any parents who are beginning to question the disease model of ‘mental illness’ or more importantly, parents who have witnessed the dramatic decline in health and vitality of a cherished son or daughter after he/she received years and years of standard psychiatric treatment.
The trauma of psychiatric abuse is different from the trauma of someone who is witnessing it. Being on the sharp end of the needle, so to speak, is a world away from empathizing with one who is, but there are some overlapping places where both the psychiatrically abused as well as the witnesses may come together.
For instance both the abused and the observer may both feel powerless at times, to stop psychiatric abuse on an individual level or on a policy level. Both parties may feel that it is hopeless to seek restorative justice for past harm or discrimination under the current paradigm. Both parties may have experienced being ignored, dismissed, ridiculed, or worse, become the target of retribution for attempting to speak truth to power within the mental health system.
If we are indeed starting to turn the corner as a society and change the paradigm of mental health care, and more specifically, if NAMI is going to maintain any shred of legitimacy as a “consumer ‘ advocacy organization, then several dialogues have to bear fruit. One important dialogue involves two disparate audiences within the NAMI community.
The first subset or audience is characterized by Pete Early and parents like him. These folks stand behind the legitimacy of the DSM and are OK with the disease model of mental illness. They identify with the diagnosis of their loved one and their main beef with the mental health system is not psychiatric abuse but psychiatric neglect. In other words, those who feel that there are not enough services for the ‘mentally ill’ in general and they do not see much of a problem with bad outcomes, dehumanizing or disempowering treatment, and iatrogenic harm.
The second subset of family members are people like myself. We are intensely dissatisfied with the lack of choice and alternatives in the mental health system and we decry the fact that individuals who do not embrace the disease model or large chunks of it, encounter a ‘love it or leave it’ attitude by mental health care providers. We are outraged by the lack of quality data and the economic and corruptive forces at play in mental health research.
Since there is relatively little data on this, I don’t know how big each audience is. I feel like I am in the minority when I attend NAMI type events but it’s hard to say for sure. I do get the sense that things are changing but the changes I observe are coming from younger professionals just graduating or entering the field of mental health and parents whose children are just starting to receive psychiatric care, not those who have been in the system for decades.
I think direct action against NAMI national is warranted if only to shine national media spotlight on NAMI and warn the newer generation of parents about the dangers of building their entire support network around an industry progaganda mouthpiece and the risk of prematurely adopting the disease model in regards to a loved one’s crisis.
Great post, Madmom!
Does Pete Earley even realize that if Kevin were to successfully come off his psych drugs and make full recovery that would be very bad for Pete’s speaking/writing career? It would actually be preferable (where Pete’s career is concerned and also the NAMI agenda) if Kevin Earley were to commit suicide. Especially if they could raise questions about “med compliance.”
If anyone were to tell Pete or any of his supporters this they would become hostile from the cognitive dissonence. Of course it’s far from complementary. And I’m sure Pete doesn’t want Kevin dead!
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’ve heard enough parents of so-called SMI patients express relief after their child’s suicide to know this comment isn’t that far off base despite it seeming like a shocking thing to say. In fact, someone just admitted to me on Friday that she is working on this very concept in her own therapy sessions. She specifically used the word ‘relieved’ that all the drama was over with after her daughter’s suicide a month ago. I last heard it said by another family after their daughter’s suicide late last fall. So go ahead and report the comment, but it’s not shocking to those of us who have heard families express being relieved after a loved ones suicide.
http://www.suicidefindinghope.com/content/what_are_the_emotions_of_suicide_grief
perhaps suicide would be less likely without these caring families making their loved one feel like such a damn burden!
Frankly Madmom, I think it speaks well of your character. As a mother who loves her adult child in a healthy way you can’t conceive of how far emotionally abusive parents can go. Most of them have to deceive themselves to behave as they do, since they couldn’t live with their consciences otherwise.
I have come to realize my own mom can be emotionally abusive. Yes, she would feel awful if I died. I will never kill myself, but my heart has been badly damaged by being ostracized by humanity for 25 years and psych drugs. Mom has no idea how cruelly she has behaved. Unfortunately it’s pointless to tell her when she hurts me and she claims it’s just my “illness” talking. Or asks if I quit taking my “meds.”
I put up with her abuse and Dad’s ignoring it for many years. Because I felt lucky they treated me like a domestic animal when “no one else could stand to be around me.”
Now I know she has the problem. I never asked for abuse. Hopefully I will be moving far away in a few months!
While I see my comment is still here, I want to be just to Pete Earley and other NAMI members.
I DO NOT know what goes on in their hearts or minds. Nor do I claim to.
Would Pete feel horrible if Kevin committed suicide and shed genuine tears of grief? Certainly.
Would Pete be truly happy if Kevin got better and lived a full, productive life? Certainly…if he remained “meds compliant” and everyone could attribute it to Psychiatric magic.
It’s hard to say how the Earleys would respond if Kevin went apostate. Would they publicly disown him (assuming he could escape psychiatric imprisonment?)
Regardless of Pete’s feelings, thought or behaviors in such an event his career would suffer. He would be forced to reinvent it whether he accepted Kevin’s choice to live drug-free or oppose and denounce his son who now serves as his mascot. The former choice would lead to a happier Kevin…and a happier Earley family I think. But it would hurt them financially. That’s a cold, hard fact. 🙁
Feelingdiscouraged,
I’ve kind of watched this conversation from afar, and I, at least, completely understand your original statement and would hope that MIA would not remove it. I, too, am happy that madmom can’t even comprehend your original intent: that is how ALL parents ought to behave, but sadly I have seen the despotic ugliness that too many parents show toward their own children.
Anyway, I just wanted to voice my support and understanding…truly I’m sorry that you are correct that there are, indeed, parents as you describe, but that’s reality.
Sam