Author’s Warning: If the word NAMI sends you into uncontrollable rage, spare yourself. This is about NAMI people who are open to our movement. It’s not intended for readers who already hate them.
When the National Alliance on Mental Illness (NAMI) first started 30 years ago, it was split between parents who wanted to build better hospitals, and others who wanted good community treatment for their adult children, who were being released from institutions, a member of the first NAMI National board told a gathering recently.
“If we’re going to build hospitals, I’m walking out,” Peggy Straw of New Hampshire recalled saying. “We won.”
Mrs. Straw started the New Hampshire afffiliate of the National Alliance on Mental Illness (NAMI NH) in her kitchen 30 years ago.
The first generation of NAMI Mommies, now in their 70’s and 80’s, were Mama Bears fighting to protect their sick adult children, using the most enlightened, progressive science they had.
It’s not their fault that, decades later, there is newer science and experience that casts doubt on theirs. They were not trained to evaluate scientific research.
Dr. Dan Fisher, who was trained, and did smell a rat that far back, was an unknown government researcher. For the next 20 years, the experts called him, and the few researchers like him, dangerous and delusional kooks. Dan was a mentally ill kook, a disgruntled ex-patient.
The NAMI Mommies listened to the most progressive experts, and believed what, as parents, they needed to believe: They and their children did not cause these devastating illnesses. No-fault genetic and brain chemistry explanations were scientific.
In those days, Peggy recalled, NAMI families were at odds with the psychiatric establishment, who still blamed families, or the victims themselves, for their mental illnesses. My parents and I got a choking dose of that at Beth Israel Hospital in Boston in 1977 from world-famous doctors.
The parents’ lives were a heartbreaking roller-coaster that never seemed to end. Time and again, they saw their children make a little progress, stop their meds, get sick, and lose all the ground they gained.
It’s not their fault they did not know what we know now about medication. It was natural for them to think meds were helping their children. They came from a doctor. The children’s symptoms improved dramatically, often from impossible to possible. Anyone could see it.
Stopping the meds was just willful and irrational. Stopping repeatedly, with disastrous results, expecting a different outcome each time, was crazy. No wonder they turned to the government and mental health system for help making their adult children to stay on their meds.
They did not wake up in the morning thinking, how can I hurt my child today?
People still remember how little Peggy Straw, the housewife, looked NH’s profoundly conservative governor John Sununu in the eye, told him what the de-institutionalized population needed from the state, and came away with the best state mental health system in the country.
Peggy did a lot of good for a lot of people, changing public attitudes, keeping people out of hospitals, even though the community-based system she helped create has become obsolete. and needs to be replaced by a distress-based system nobody thought of back then.
I got to know Peggy Straw, and several other NAMI Mommies of her generation, when I worked at NAMI NH from 2004 to 2008. starting a consumer speaker
s bureau, and working on courts, cops, and corrections issues..
I was completely comfortable working there, with warm, dedicated, enlightened volunteers and staff, who are still my friends. They don’t go to work thinking, How can I hurt people today. Nobody censored my speakers, some of whom told groups they’d done better without medication.
I’d get furious at the national events I had to attend, because of NAMI National’s patronizing attitude toward “consumers.” 2006 was a little late to be so proud of having a few consumers on their board and national staff.
NAMI NH is not NAMI, and NAMI affiliates are all different, depending on the people involved. NAMI does not believe everything they did 15 years ago.
NAMI people are not as bad as the most extreme NAMI-haters in the empowerment movement say. They’re not hurting people on purpose either. Based on what they know from science and their experience, they’re helping.
Nancy Adams, my favorite NAMI volunteer from that generation, was very interested in my current work with Corinna West at Wellness Wordworks, trying to replace the disease-based mental health system with a trauma-based “distress model.” (Corinna is a regular blogger on this website.)
It might have helped Nancy’s daughter, who lost her life-long battle with severe distress and substance addiction three months ago.
When I mentioned medication vacations to Peggy Straw, she said, “I hope my daughter [now in her 50’s] doesn’t take another one. Those were disastrous.”
Chances are, Peggy’s daughter got off meds the wrong way, since the system did not help people do that. I don’t blame Peggy for hoping she doesn’t try it again. Peggy suffered as much as her daughter on her daughter’a unsupervised med vacations.
No stranger or Martian who attended that annual meeting would see any connection between the nice, open people there, and the semi-hysterical NAMI hatred that sometimes appears on Movement-connected Facebook pages and websites.
NAMI hatred hurts our movement. Everyone connected with NAMI does not believe everything NAMI believes. Many want to know what’s newest in mental health. Hating them before we meet them (prejudice) is self-defeating and foolish.
Ken,
I think any decent human being can understand when someone has been “duped”… We all all get duped along the way. We all make mistakes. We are all human.
And we need to forgive ourselves and others when we have done the best we can at any given moment in time; especially when we’ve made mistakes, based upon faulty information.
With that said…
Where are these caring souls today?
What are they doing today to correct their wrongs (however innocent at the time)?
I had a mom myself…
She used to tell me, “Son, if you made a mess, you need to clean it up.”
And she didn’t care much about whether the mess was intentional or unintentional.
I say these wonderful mothers (as you describe) need to act like mothers… And clean up their mess.
They should be busy writing the kind of post you just wrote, followed by explanations on how the drugs hurt their children, and how we need to stop using these drugs with vulnerable children.
They had plenty of time for lobbying efforts when they were young mothers… A good retired mother, it would seem would have even MORE time…. PLENTY of time to clean up their mess!
That’s all I have to say.
Duane
Actually, I do have one thing left to say.
A good place for them to start with be in the area of protecting freedom for others sons and daughters…
Writing letters, sending emails to end forced treatment with psychiatric drugs.
The older NAMI members had a lot to do with this, and it seems only right that they are the ones who need to be contacting state reps, and Congress to put an end to what they helped start.
Call me a NAMI hater, if you’d like.
But that’s how I see it.
Duane
You don’t sound mean-spirited to me, Duane. But the women in my story are 80 years old. They fought their fight and have earned a rest.
NAMI, on the other hand, does have moral responsibility to undo the mess. They think they are, but say it has to be an evolutionary process. Whatever they do will be too slow, the wrong way, and the wrong thing to us.
Many state affiliates are evolving faster than National. NH has always been way out front. That’s why I could work there. At National, they knew me as acutely critical and confrontational. They made me so mad.
I just want to de-escalate the hatred. It doesn’t hurt NAMI, but it hurts the NAMI haters and our chances to make things better.
I don’t hate them, but I’m not going to support them and their agenda either. The NAMI group in my city just held their annual walk-a-thon. I was invited to walk. I graciously declined and when they asked me why I told them that I could not support their agenda at this time because it did not work for freedom of choice in treatment. All they support here is the old toxic drugs treatment with no deviation and forced treatment if you won’t comply. They were incredulous and then I very quickly became persona non grata. They weren’t very gracious about it.
Good for you Stephen Boren! I wouldn’t have participated either and agree with what you say here.
It’s amazing how even a former “mental patient” who is noncompliant, I take no psych drugs at all, can throw them into a tizzy and get them all upset! What’s it to them if I don’t take toxic drugs?!!!! I have the feeling that there’s a big control issue going on with NAMI, which they cover up under the guise of “parental concern.”
Exactly, if you (or any one) can navigate in this world without toxic drugs flowing through your body, that’s the person who people SHOULD WANT TO TALK TO, find out how they did it, do it, and what works for them. People call us all at times “anti-psychiatry” or anti-med…I’m anti-toxic aren’t we all? less is best! I think the control issue is the $cash cow$ syndrome! pharma sure has figured it out…donating $28 million in 3 years to NAMI proves they are fueling the forever ill, permanently on meds paradigm!
80 years old?
My dad will soon be 82.
He still spends time on the computer and phone.
80 years old is not too old to send emails, make phone calls, write letters.
President Ronald Reagan was this age during his last term.
Nothwistanding alzheimer’s or a severe health condition that would limit this kind of activity,
age is no excuse.
Now you can call me “mean-spirited” if you (or any other reader) would like.
Duane
correction,
President Reagan was 78 at the end of his term… “Close enough for government work.”
Late 70s, early 80s…
Mid 80s,
Age is no excuse.
Duane
If they are “too slow” then we proceed without them. Because this needs to be done sooner, rather than later.
In fact, it needs to be done quickly.
We are losing lives here.
Duane
Ken,
Let me give you a current story that I think reflects a bit of what you’re saying.
NAMI Ohio is pursuing an expansion of Involuntary Outpatient Commitment in Ohio. In researching the best responses to an upcoming meeting with their leadership I discoverd that NAMI CT just went through this same fight, but guess what, it was NAMI CT that was trying to prevent Involuntary Outpatient Commitment! So yes, not all NAMI’s are alike. I agree with Duane though that once this new information has been learned it seems NAMI has a role or responsibility to “undue” the consequences of years of advocating for things that actually hurt people (unintentionally I know). Thanks for your courage in writing the piece.
David,
Thank you for what you had to say.
I am all for forgiveness… In fact, I believe we are all spiritually called to forgive.
But I’m hesitant for blind reconcilliation.
IMO, reconciliation needs to be earned.
As it involves trust.
And trust is built.
And it is not based upon what people say, or even how they feel, however remorseful, but what they do.
When someone injures another (or a group of people), it matters not that they are “sorry”…
What matters is that they change direction, and begin to help the person (people) they injured by not only asking to be forgiven, but by STOPPING what they are doing, and changing their ways, with action….. Action that can be TRUSTED.
Again, I really do think the state NAMI offices need to put in some time, doing what many of us have done for years, pro-bono… UNDOING the harm they’ve caused, for future generations… In this case, OTHER people’s children.
I may come across sometimes as mean-spirited.
I simply want the injury to stop, and I do not see the level of committment needed (yet) to make sure it stops.
It’s time for action.
In the words of my own mom, “Don’t just stand there. Get a broom…. Get busy!”
Duane
In case anyone wonders what research or evidence is out there on outpatient commitments…here are the studies. if there is any more…send them over to me at [email protected].
Kindly,
Dr. Watson
There are few studies that have attempted to determine the effectiveness of Outpatient Commitment Orders (OPC). In one of the first thorough reviews of empirical studies of OPC, Dr. Kathleen Maloy concluded in 1992, there was “almost no valid empirical evidence in support of the effectiveness of involuntary outpatient commitment vis-à-vis treatment compliance, success in the community for people with severe and persistent mental illness”.[1]
This acknowledgement by Maloy in 1992 led Duke University researchers in North Carolina in 1999 and 2001 to examine if OPC reduced hospitalizations. They, Swartz and his colleagues, concluded “outpatient commitment had no clear benefit unless it was sustained for at least six months and accompanied by high-intensity community services and supports”, despite no significant differences in hospitalizations between the non OPC controls and those under commitment at the one year mark.[2] [3]
In turn, the Bellevue Outpatient Commitment Study was conducted in 2001, which was the only controlled study that explicitly provided and offered enhanced community services to both OPC and non OPC groups. They reviewed if commitments were necessary for individuals to continue with treatment if they were offered it without the OPC. They concluded “individuals provided with voluntary enhanced community services did just as well as those under commitment orders who had access to the same services”. Researchers found no additional improvement in patient compliance with treatment, no additional increase in continuation of treatment, and no differences in hospitalization rates, lengths of hospital stay, arrest rates, or rates of violent acts.[4]
This lead Drs. Kirsley and Campbell, who were highlighted by the Cochrane Database of Systematic Reviews, the gold-standard of peer reviewed psychiatric research, to look at the number of outpatient commitment orders (OPC) it would take then to prevent one re-hospitalization. They concluded “it takes 85 OPC orders to prevent one readmission, 27 to prevent one episode of homelessness and 238 to prevent a future arrest”.[5] Thus, 84 people would need to be subjected to a non-required forced treatment program in order to reduce just one re-hospitalization.
This was confirmed by researchers then in 2007 at the Institute of Psychiatry in Maudsley, UK, whereby they conducted “the most comprehensive and through review of outpatient commitments” at that time. They concluded, “it is not possible to state whether or community treatment orders (CTOs) [the equivalent to OPC] are beneficial or harmful to patients”.[6]
In Contrast, the State of New York began investing their own OPC, under Kendra’s Law and the Assisted Outpatient Treatment (AOT) program; however, their results now appear mixed, whereby the New York State Office of Mental Health in 2005 and later 2009 stated the AOT drastically reduced hospitalization, homelessness, arrest, incarcerations and adherence to medication compliance[7] [8]; however, non contracted independent researchers in 2004 had indicated that their sample of the AOT group and control group “did not differ significantly (with) rates of hospitalizations, homelessness, dangerousness and arrest/incarcerations”. One additional major conclusion was that the AOT forced treatment group was significantly “less satisfied” with treatment than those not under commitment. [9]
——————————————————————————–
[1] Maloy, Analysis: Critiquing the Empirical Evidence ; Does Involuntary Outpatient Commitment Work? Mental health Policy Resource Center (1992).
[2] Swartz MS, Swanson JW, Hiday VA, et al: A randomized controlled trial of outpatient commitment in North Carolina. Psychiatric Services 52: 325-329, 2001.
[3] Swartz MS, Swanson JW, Wagner HR, et al: Can involuntary outpatient commitment reduce hospital recidivism? Finds form a randomized trial with severely mentally ill individuals. Am J. of Psychiatry 156: 1968-1975, 1999.
[4] Steadman HJ, Gounis K, Dennis D, et al: Assessing the New York City involuntary outpatient commitment pilot program. Psychiatric Services 52:330-336, 2001
[5] Kisely S, Campbell LA, Preston N. Compulsory community and involuntary outpatient treatment for people with severe mental disorders. The Cochrane Database of Systematic Reviews 2005, Issue 3.
[6] Churchill, R., International experiences of using community treatment orders, by the Institute of Psychiatry at the Maudsley (UK), Section of Evidence based Mental Health-Serv. Research Dept., March 2007. http://www.iop.kcl.ac.uk/news/downloads/final2ctoreport8march07.pdf
[7] N.Y. State Office of Mental Health (March 2005). Kendra’s Law: Final Report on the Status of Assisted Outpatient Treatment.
[8] Duke University School of Medicine et. al. (June 2009). New York State Assisted Outpatient Treatment Program Evaluation.
[9] Perese, E.F. , Wu, Y.-W. B., & Ranganathan R. (2004). Effectiveness of Assertive Community Treatment for Patients Referred under Kendra’s Law: Proximal and Distal Outcomes International Journal of Psychosocial Rehabilitation. 9 (1), 5-9.
Thank you Duane! Here is another study on PACT Toby.
THE TROUBLE WITH PACT
QUESTIONING THE INCREASING USE OF ASSERTIVE COMMUNITY TREATMENT TEAMS IN COMMUNITY MENTAL HEALTH
http://yakimavalleysystemsofcare.blogspot.com/p/trouble-with-pact.html
Excellent post. Yes, many, many people have been seriously damaged by NAMI and their inaccurate storytelling through the years. Many NAMI chapters are modernizing but many are still harming people.
However, if we who have been harmed by NAMI keep acting out our old traumas and seek revenge, then how are we any better than them for hurting us? How can we convince them by screaming at them? It’s very easy to beat someone, it’s very hard to win them.
First do no harm.
Corinna,
I’ve read many of your comments on other posts/blogs on this subject, and it seems you are saying the same thing this time.
I’m for forgiveness.
Not blind reconcilliation.
I’m for collaboration.
Not compromise.
I pray we are not so desperate for consensus, that we are willing to take anyone into the movement, who expresses remorse.
We can forgive them.
But we don’t have to “join” them.
And we don’t have to ask them to join us, if they’ve made no efforts to undo the harm they’ve done… to make real amends.
Duane
And this is not about “them”, and “hate”.
And it’s not about “us” and “re-tramatization”.
And its not even about “them” versus “us”.
Or making sure we don’t get caught up in “them” versus “us”.
It’s about MUCH MORE.
It’s about future generations.
And what kind of world we want to leave behind.
That’s what this is about!
Duane
I agree, Corrina, it’s important not to see NAMI as monolithic. Some chapters take very progressive positions. There are, no doubt, differences of opinion within all the chapters.
Ken,
With all due respect to these mothers, nobody needs a medical degree to smell a rat. My bone of contention with NAMI is that it is mainly funded by pharma and people should be rightly skeptical of the motives of this organization. I’m sure there are plenty of nice, well-meaning people in NAMI, but one of the reasons it got started is because parents, especially mothers, were tired of being blamed. I can understand that, but consider the perversity that this rejection of being blamed has led to in the years since. It’s not bad parenting, these mothers often say, my child has a brain disease/biochemical imbalance. Is it too humiliating for these mothers to have even considered that the family background may have played a possible role in their child’s initial trauma or continuing problems? Rejecting this idea in order to save face may actually have prolonged the suffering all around. Very quickly the medication became the whole story. There are many avenues one should explore if one wants to help a relative, and pride should take a back seat. I have no wish to blame individual members of NAMI, who are struggling like the rest of us, but NAMI’s pharma funded clout makes the lives of the rest of us who don’t agree with the meds approach very difficult indeed.
AMI (Quebec, Canada’s version of NAMI) was needed to bring Robert Whitaker to Montreal Oct 26, 2011 to speak at Loyola Campus. His presentation told of evidence that long term usage of drugs(medicines) might not work.
Evidence like a 1% brain shrinkage a year on psychiatric drugs-medicines.
The science of what works to help the mentally ill be functional needs to be disseminated.
Tobacco companies did not want the evidence of harm from their drug to be disseminated, no company wants to stop selling product to a customer.
In a (drug) war you have enemies and hatred , that’s unavoidable.
In the past the mentally ill were put in a jail, today they are put in a chemical jail.
A life sentence? No thank you.
I’ve met quite a few of this elderly group of NAMI mothers myself over the last decade +, and the ones I met droned on and on about how they wished their grown children would stay on the medications, which seems to be the only way they know how to “help” their children. Many of the adult children of these women would not allow them back to see them while in mental health court–in fact the parents became the “other side” and would testify to have their grown child committed. This is when I first became aware of NAMI. I saw one-sided treatment thinkers, and pro-med mothers. I saw the mother’s wear the and I quote ” I’ve been doing this for 30 years” badge proudly as they sat there knitting to pass time. I got up and moved away from the group, thinking how can you sit there so complacently after 30 years?! I thought, omg I hope this isn’t me in 30 years! What have they done to change things for ME and the next generation of mothers in that situation? meaning: what have they done to prevent mothers from having this situation? where are the “treatments” that work? is it only pills? well, yes! that is the bottom line–science? for what? what’s new? new antipsychotics?
Those women weren’t for change, they were there for making sure their child was committed.
And by the way, I finally signed up to log in to comment here to leave this comment. It’s based on my own experience and opinion.
I also want to say that having the anti-hatred disclaimer from the author at the top feels just as hateful–why single people out, GOOD people, people who care about their loved ones who happen to not agree with NAMI? because that is me.
NAMI national is funded by pharma and that is a conflict of interest because of the drugs sold by the various companies are the ones that are the main treatment paradigm for mental health in America. I wouldn’t want to be affiliated with ANY support group with that funding, that’s my choice. If the groups who are not so “part of NAMI” then why are they still called NAMI? change the name then, otherwise they are connected and under the big umbrella of what NAMI stands for….
I agree with whoever said the older NAMI moms need to write letters, call, campaign …they need to pave the way, and yet they (not all!) have not, so it leaves me or Rossa Forbes or Mark PS or Duane Sherry to continue to say, hey something’s not right here, and hey, something hasn’t worked so let’s figure out what does!
Thanks for logging in. I appreciate what you’ve shared here. What really irks me about NAMI is that they act as if they speak for all of we survivors. They certainly don’t speak for me at all. I’m glad that we finally have organizations of our own that speak the reality of what is, as compared to the fantasies of MAMI. MAMI is paternalistic, or maternalistic as the case may be and the membership is certainly not composed of peers. Our voices must become stronger to stand against their desires and message of no hope, no life, and only a broken brain.
Sorry, didn’t have my glasses on and kept typing M in place of N. Blind as a bat without the darned things.
As a matter of fact, NAMI started with a “W” so you just had it transposed 🙂 It began as WAMI and was started by the co founder of NAMI, mother Eleanor Owen, who according to one article written about her still drives a car with that acronym on the license plate
http ://seattletimes.nwsource.com/html/pacificnw/2014374698_pacificpeleanor13.html
Thanks for the mention. Giving the mentally ill a life sentence of drugs is not right, not justice. A person would have to at least committed a crime first before such a sentence. Preventative justice makes some “patient”s angry, so they need more drugs.
Stephany,
You make a great point.
I assume the mothers mentioned in this post will be reading Ken’s words, and ours…
I hope some of them chime-in…
I’d like to hear what they have to say.
I’d like to read some committment on their part to set things straight, to correct some harm that they caused.
However innocent (uniformed) they were at the time the harm was done.
Duane
SOME (not all!) of those women are pathetic. They have no lives or purposes beyond cramming pills down the throats of adult children till the children die. Even if these damned drugs were good for people and helped weird thoughts/behaviors instead of exacerbating them the NAMI mommies really need to let go. In parents with adult kids not stigmatized with SMI labels this is called codependent behavior. Maybe they should try therapy!
As Duane Sherry wrote above, I have one more comment to share about my experience …
Years ago I was taking a look at what kind of housing was available for mental health clients in my area. I came across a house where several people could reside. This looked promising and it was written up in local papers as well, because the woman who was hand sewing curtains to make it look all cheerful was an elderly NAMI mother, not just any NAMI mother she was head honcho of the large city NAMI group.
I looked up the stats on the house and clients had to apply which made sense. The fine print on the application had 2 questions:
1. How do you feel about medications?
2. Will you remain medication compliant while there?
It was mandatory to be on medications to live there. THAT is the problem that needs addressing with re to NAMI ‘s agenda.
NAMI, is not *for* patients, it is *for* the families and loved ones of those patients/clients, and with a pro-med agenda backing them, what do you think those NAMI members promote to their grown children?
That elderly NAMI director also was delighted and proud to introduce her great friend and “expert on Schizophrenia” at the lecture I attended where Fuller Torrey was the only speaker, of which she also charged 50.00 a person for a private dinner held at her home to meet Torrey.
I think that says it all.
How long ago were those two examples? Has the situation changed?
That was just a couple of years ago and no the system has not changed. In fact, residential board and cares ran by the state also require medication compliance.(and many only get into the housing via a court-ordered medication compliance “deal”).
The head NAMI mother: She co-founded NAMI, and wrote this which is used to hold people against their will (in Seattle area):
“Drafted current language in RCW 71.05 to include “grave disability due to mental illness” as criteria for a 72 hour evaluation for Involuntary Treatment.”
http ://www.dearshrink.com/eleanorbio.htm
Perhaps this is why there are such strong feelings about “NAMI mothers”.
I don’t support NAMI either, or walk on their walks. I don’t like their support of outpatient commitment, 72-hr forced treatment, or Big Pharma any more than anybody here.
I wrote the piece because NAMI hatred hurts our cause and does not hurt NAMI. We can’t create beachheads on their shoreline if we can’t get them to listen. And we can’t get them to listen if we approach with hate, and put them on the defensive and they throw up walls against us.
The remark at the top about NAMI haters was an afterthought in anticipation of the hateful reaction I excpected. I don’t consider this reaction hateful or personal. Thank you for that.
The other reason I added it is that I looked at my lead about Peggy Straw and realized I needed something provocative to draw in the reader. I was a newspaperman before I was anything else. The lead (first paragraph) is everything. If it’s weak, nobody reads the second graf. A good lead answers the question “why should you care,” and makes the reader mad, glad, sad, or scared.
NAMI NH supports me. I get a stipend from them for training police under a contract they have with the Police Academy. But $100 for two hours every six weeks is not enough to buy me. I say what I want. If I have something to say about them, we know each other well enough for me to say it to them, straight from the shoulder. I’m able to speak to the issue without attacking the people on the other side. Good advocates have to do that. If people feel defensive or angry or threatened, they stop hearing.
I totally agree with you that we have a communication problem here, and we won’t get very far spewing hateful messages. However, it’s not about hating NAMI, it’s about how people conduct themselves in person and in print. People who rant and rave are maiming us all. We’ve learned a lesson here on this site, and I’ve noticed that there is a better exchange of opinions once people reel in their baser impulses.
Thanks for your response, Ken. I would imagine that writing that you don’t support NAMI yet they pay you to train police must feel conflicting in a way.
Considering no one here (so far) has said they are NAMI haters, but instead opened a good dialogue with their views of NAMI, I am wondering who exactly you were worried might comment with the “uncontrollable rage” you suggested at the opener?
What program do you teach the police? out of curiosity. I hope it’s to train them to talk people down, and refrain from approaching people with violence and handcuffs–as happened to my adult child (just for being found after being lost!)
I teach exactly what you hope I do at the Police Academy.
You might disagree, but I have no problem disagreeing with people on some things and working with them on things we agree on.
When I worked in Washington long long ago, that’s how most people did things. People were involved in a lot of things, and their adversaries on one would me their allies on another. They did not get personal because those adversaries might become allies someday.
That’s where I learned my advocacy. Too bad Washington no longer works that way.
Here’s a sample of what many people are talking about re NAMI and it’s funding: $28 million in 3 years is a LOT of $$ from companies that make the drugs that are the main treatment paradigm NAMI promotes! this is from the 112th Congress report for 2011-2012. I have the link if any one wants me to leave it later–but not wanting to bog down the posting of the comment with it.
“Reports in the New York Times claim that money from the pharmaceutical industry shapes the practices of non-profit organizations which purport to be independent in their viewpoints and actions. It is alleged that pharmaceutical companies give money to non-profits in an attempt to garner favor in ways that increase sales of their products. Senator Grassley wanted to know if the National Alliance on Mental Illness (NAMI) accepted pharmaceutical funding and what kind of influence this funding had on its operations.
Senator Grassley received a response from NAMI National, which reported that it received $28,659,300 from pharmaceutical companies from 2005 to 2008. It also stated that there are approximately 1,000 NAMI affiliates throughout the country. NAMI National stated it could not detail the financial relationships affiliates may have with pharmaceutical companies. Senator Grassley then sent letters to 51 various NAMI affiliates requesting financial records on monies received from pharmaceutical companies and from NAMI National.
All but three (Alabama, Arizona, Connecticut) of the NAMI affiliates responded. All stated they accept unrestricted contributions from pharmaceutical companies.”
—
So the affiliates accept unrestricted contributions from pharma too it appears for the most part. Call me a purist, but this is what I personally will never take: money from pharma to fund ANYTHING I do–that’s just the way I am.
When we take into consideration this big picture of what NAMI has become….then we can stop and say, hey did those moms of yesterday want that to end up that way? being heavily funded by the very companies that sell these drugs? and often illegal marketing? ZYprexa, Seroquel, Risperdal–think about it. Those companies were fined MILLIONS of dollars by the DoJ for medicaid fraud and illegal marketing tactics of these mental health drugs. How can NAMI take money from companies that DIRECTLY harmed there clients????
NAMI dot org website has some financial disclosures that are current for the 1st Q of 2012 its lists donors of AstraZeneca (Seroquel maker) Bristol Myer Squibb (Abilify)Forest, Novartis, and Sunovian (Latuda)…so they are STILL taking money, nothing changes.
Nothing changes.
That’s the problem.
The issue is not who funds NAMI. Everyone knows who funds NAMI. That is a given, and they are working on it. The issue is that everyone who is clueless about mental health reaches first for NAMI.
Either we have to help NAMI change their messaging to be more accurate despite their funding, and some chapters are showing this is possible, OR we have to create a our own public relations, volunteer, and promotional coalition big enough to have people find us first.
BUT neither of those goals is helped by saying how awful NAMI is.
Unless you have a different idea of how to get the real story out? I know your Involuntary Transformation blog get some decent readership.
I used to belong to NAMI for 6 years. During this time I wasn’t aware treatment options (valid–not Scientology) existed.
The issue IS who funds NAMI in my opinion–it fuels the medication based medical model as treatment for mental health care in America. Face it, pharma sees a lucrative market there and for a reason, in America there are no other treatment plans!
Well, let’s build some alternative models then. We can each of us on this blog take a small business course from our local small business office and start something up. Sorry if I misidentified that blog.
PS I don’t write that blog.
Re: NAMI (old-school chapters) versus Recovery Models/Programs
I’m all for recovery models and programs.
And I think Corrina makes a good point, namely that we need to have more of them.
However, IMO, we need to put first-things first.
And the first thing that needs to take place is the issue of choice… People cannot have freedom to choose new models, until they have freedom to REJECT the older ones… Those that are now FORCED on them.
The use of psychiatirc force needs to stop.
And it needs to stop yesterday!
Once we have a federal law passed to end force, we can then talk about an indivual’s right to chose whatever option THEY deem most appropriate.
And those options will be numerous, once the one-size-fits all model is taken down.
But it won’t happen without federal legislation…
We will continue to have some states that use less force than others, but none that are mandated NOT to use force without due process, and options for treatment.
The bad news, “It’s gonna take an Act of Congress.”
The good news, “If we have time to blog, and make comments, we have time to get started writing a federal bill – getting it lobbied, passed in both houses and signed into law.
Otherwise, we will be making these same comments ten years from now… without a game plan.
That’s my call.
And I’m stickin’ to it!
Duane
We can never undo all the hurt that’s been done.
But we do something for future generations.
And we can leave this earth knowing that it’s a better place than when we arrived, for those diagnosed with “mental illness” –
http://discoverandrecover.wordpress.com/mental-health-freedom-and-recovery-act/
Duane
Exactly Duane– freedom to choose and definitely not be locked into the old school method of drug em up and shut em up; I just re-read David Oaks personal bio page at the Mind Freedom site, noted his mom supported him going off of meds and wanting freedom, and he has lived successfully off of meds, and I was re-inspired by his post there.
Until patients can go to a psych hosp and have the method of treatment of their choice INSIDE the psych ward–this won’t change, and the drugs are less than efficacious as proof that system doesn’t work because otherwise the hospitals would be empty!
We need funding for Soteria Houses in ALL states, and people need a place they can go BE in the midst of a psychotic episode (for example), stay off meds if that is their choice and ride it out. People think I am wacky for saying that, but I have seen psychosis come and go, in people off and on meds, it seems to “run its course”.
I’m preaching to the choir though!
This is the end of the road for everyone it seems we get this far in convos and then it leaves us with the same old big “need a solution-how-to-do-it” part of the equation. I think it will be hard to create a new medical model of treatment, frankly, because the current med-based one is so entrenched in our society. When we leave this website, we stand alone in a huge world.
How to make a difference with all of this?
Stephany,
I agree.
“Psychosis” is an episode.
And people can come out of psychosis.
And some people may have a few “breaks” before they come out for the last time.
And people do come out of psychosis and STAY out!
They move into a state of living in the present.
With family and friends and a life full of the things that make it peaceful and joyful… Whatever those things are for THEM!
Yes, we need a Soteria in each state.
Along with other items.
These are addressed in the Mental Health Freedom and Recovery Act – which is HARDLY carved in stone!
In fact, the verbage of this “vision” calls upon the full participation of survivors and others who know MUCH MORE about recovery than most (not all) mental health professionals.
We have to begin to dream.
And act as if we had faith.
And I believe that once we do, good things will begin to happen.
We are not trapped.
We are not victims.
We can do whatever we set our minds and hearts on doing….
I sent another letter by email(one of many over the past several years) to Senator Chuck Grassley’s office last week asking that he consider sponsoring such a bill…
But bills need to originate in the House…
And I have asked my own Rep, Marchant to sponsor the bill, but received no response… so I sent it to Rep Ron Paul… nothing.
I have circulated the vision for this legisation to the key organizations and persons I know (several times each), for months… nothing.
The problem in my mind is obvious.
I’m just one person.
We need to do this as a TEAM.
Duane
RE:psychosis
One can argue being in love (the feeling) is a form of psychosis.
Ken, I respectfully disagree. I believe that if you claim to associate with an organization, you at least imply endorsement of that organizations beliefs. I know folks who are good people, who don’t beat their wife and kids, who don’t kick the dog, who go to church every Sunday and otherwise live a good life but, I won’t hang out with them because they belong to the KKK. I think claiming membership means something and I won’t hang out with NAMI folks because to me it means that no matter how good the person is, they’re endorsing an organization that is pretty much owned by Big Pharma and that promotes policy that includes force, coercion and other harmful effect. If people want to get away from that then they should leave and disown the organization.
One other correction: In the beginning, NAMI was about support. I’m in favor of support for family members. NAMI wanted to hold psychiatrists accountable as medical doctors. Too many psychiatrists diagnose based upon judging behavior instead of looking for other causes. (If I had a thyroid out of whack, a medical doctor would run a blood test, discover the thyroid issue, write a prescription and I’d get on with life. If I see a psychiatrist, I am ruled too high or too low energy and diagnosed manic or depressed or both and told I have no more life except to take psych drugs forever. That’s malpractice and misdiagnosis.) NAMI wanted real science even if it were just to rule out other causes. However, they crawled into bed with Big Pharma and twisted it’s purpose and mission into “brain disease” and drug, drug, drug. I don’t know that NAMI can fix that. They’ve become too perverted.
I respectfully disagree. How can you persuade people and win them over without associating with them. I don’t associate with anyone who is completely closed, but I’ll talk to anyone who is minimally open to what I have to say. NAMI NH is more than minimally open to the distress and trauma model. And I’m not a NAMI member or financial supporter. I’d do my police training the same way no matter who paid for it. It’s just a bureaucratic arrangement between NAMI and the Academy.
Ken said:
“It’s just a bureaucratic arrangement between NAMI and the Academy.”
That IS the problem; it’s that convenient ignoring of the truth, that pharma uses to do :
Sell medications via illegal marketing tactics
Pay psychiatrists such as Melissa Delbello, KOL 250,000 in ONE quarter–to promote their psychiatric drug they make (Check Dollars for Docs)
Just to name a couple of reasons why that sentence is all the reason why this fuel to the fire of corruption will never stop.
Fined MILLIONS of dollars by the Dept of Justice! Medicaid fraud! those things HURT the very people we are all writing about!
It is guilt by association, when we work for pharma that way. People can talk to others without taking pharma money or be associated with what Pat Risser eloquently wrote as example above in comment—birds of a feather–it all comes to mind.
I have LOTS of conversations with pharma people and do not work for them. It IS possible, holy cow Democrats and Republicans talk, right? 🙂
There is NO reason, in my opinion that a real support group can grow into a large mass like NAMI has and never take pharma money to do it–how about Mind Freedom? there’s a start! no reason why NAMI can’t be left alone, walk away from it and it’s 75% funding from pharma and their conflict of interest and support Mind Freedom (example of one choice)instead.
I wouldn’t want someone like Charles Nemeroff for an associate either would you? Investigated by Grassley for non disclosure of pharma money and more! Same thing!
NAMI=conflict of interest.
This is all my opinion.
Perhaps those who put us down for being angry at the people who have abused us could suggest some medication that would properly numb us out and make us stop complaining. Do I have that right?
Hmm. Maybe we could find some nice drugs the NAMI mommies could take for anxiety/depression/OCD and all their “mental illnesses” they lack insight into. They obviously suffer from those. But their “loved ones” suffer even more.
Ken,
In your post, you insist, that: “NAMI people are not as bad as the most extreme NAMI-haters in the empowerment movement say. They’re not hurting people on purpose either.”
Well, frankly, I don’t know anything about, “the most extreme NAMI-haters in the empowerment movement,” but I can understand many people who hate NAMI; I mean, I think I know why many do hate it; and, I will explain why, with a simple analogy – because I don’t think you get this; but, first, I must say: I don’t know anyone who claims that NAMI is, “hurting people on purpose.”
Surely, NAMI is not hurting people on purpose. After all, people who dedicate themselves, to seeing to it, that their supposedly “mentally ill” family members shall continue to take aversive, toxic drugs, are not, thus, hurting people on purpose; but, they are hurting people. They are hurting their own family members, for they are living in denial of fundamental realities which have led to their family members’ so-called “diagnoses.”
You seem to realize that such people are in denial.
For example, you say, “Based on what they know from science and their experience, they’re helping.”
(I’m guessing that, what you really mean to say, is this: “Based on what little they know from science and their experience, they believe they are helping.”)
Well, I think they believe they are helping, too.
But, nonetheless, I understand: NAMI is hated by those who realize the extent to which NAMI promotes policies which have destroyed the lives of countless individuals who’ve been identified as “mentally ill,” because NAMI persists in denying the genuine truths behind what they are calling, “mental illness.”
And, in place of such truths, NAMI offers a narrative which depicts the supposedly ‘afflicted’ individual as being somehow fundamentally defective – “brain disordered”; thus, an identified “patient” is naturally viewed as virtually heretical for taking what you call, “unsupervised med vacations.”
The so-called “patient” is, in that instance, viewed by his or her family like a runaway slave would be viewed by his or her owner.
NAMI helps to creates that way of thinking, so many people rightly object; and, yes, many even hate NAMI.
This is the same as someone hating an organization that might, today (in the year 2012), persist in telling us that, “Negroes are not children of God.”
(Of course, one needn’t believe in ‘God,’ per se, to find such a notion objectionable.)
Because African slaves were viewed as fundamentally ‘Godless,’ so it was that their enslavement seemed perfectly justified to ‘good’ Christian slave owners.
Ergo, someone hating an organization that’s long been dedicated to enslaving people to toxic drugs (e.g. neuroleptics) may be the equivalent of one hating an organization of slave-owners.
That hatred needn’t entail a hatred of any individuals within that organization; it may entail, on the contrary, just a hatred of the slave trade, the perpetuation of slavery and that creed which leads slave owners to believe that slave-holding is their right (and, even their duty).
Do I equate NAMI with an organization of slave holders?
Well, I do think it is, to a considerable extent, the moral equivalent, yes.
After all, it is dedicated to finding ways to keep people enslaved to toxic drugs against their will; and, I know (from experience) that being forced onto such drugs strips a person of his/her dignity and usually amounts to a kind of torture; and, those drugs are now known to drastically reduce the life expectancy of most who are kept on them enduringly.
Yes, this is comparable to the kind of slavery that, in 1865, was outlawed, by The Thirteenth Amendment to the United States Constitution.
And, just as I’m sure that people who force their family members to take toxic drugs don’t mean to hurt them, I’m sure that many slave owners, throughout history, did not mean to hurt those whom they held as slaves.
Meanwhile, in your post, you say, “NAMI hatred hurts our movement.”
Indeed, yesterday, in one of your comments (June 15, 2012 at 7:50 am), you wrote that, “in Washington long long ago … People were involved in a lot of things,” so, “adversaries on one [issue]” were “allies on another. They did not get personal because those adversaries might become allies someday.”
You explained, “That’s where I learned my advocacy. Too bad Washington no longer works that way.”
OK, fine. I have no problem with the idea of forming alliances, which include people of differing views.
Likewise, I see no reason to launch personal attacks of any kind.
But, you seem to be supporting the slave-holders.
You write in your blog post, “The NAMI Mommies listened to the most progressive experts, and believed what, as parents, they needed to believe: They and their children did not cause these devastating illnesses. No-fault genetic and brain chemistry explanations were scientific.”
(Again, your wording is a bit off; when describing the mindset, which led those moms to band together and devise ways of keeping their loved ones drugged, I think you mean to say, that: “No-fault genetic and brain chemistry explanations sounded scientific.”)
I’m not sure if you are aware of this, but what you are referring to as “devastating illnesses” are, in truth, devastating only because of the paradigm of ‘care’ that’s generated by perpetuating fundamental lies regarding what those so-called “illnesses” are.
Because NAMI has long been beholden to Big Pharma (its primary funder), NAMI has long been perpetuating endless lies. Of course, the old-timers in NAMI (the aging NAMI mommies) were essentially duped by Pharma. But, are they still being duped??
If not, then have they striven to end the lies?
Really, I wonder.
You seem to be someone who insists that each NAMI affiliate has a mind of its own.
For, you say, “NAMI NH is not NAMI, and NAMI affiliates are all different, depending on the people involved. NAMI does not believe everything they did 15 years ago.”
But, Ken, have you visited the NAMI NH web site???
On the page entitled, “Types of Mental Illness,” you can read the following:
“Mental illnesses can profoundly disrupt a person’s thinking, feeling, moods, ability to relate to others and capacity for coping with the demands of life. They are not the result of personal weakness, lack of character or poor upbringing, but instead are biologically based brain disorders that can affect persons of any age, race, religion or income.”
http://www.naminh.org/education/types-of-illness
From the context of your post, I believe you may well understand, that the notion of so-called “Mental illnesses” being “biologically based brain disorders” is a lie that benefits no one except Big Pharma and pharma-psychiatrists.
In your post, you speak highly of, “Corinna West at Wellness Wordworks, trying to replace the disease-based mental health system with a trauma-based ‘distress model.’”
So, I suspect you realize: It is The Big Lie – (of equating “mental illness” with “brain disorder”) – which feeds all the other lies now keeping millions of people enslaved, to toxic meds.
That one lie leads to countless deadly practices.
All of these lies are tied into endless sums of misinformation, on the Internet.
How this information is linked together on NAMI sites is, I feel, very important to note.
After all, what I see from studying the NAMI NH site is that it is completely enmeshed with the national organization of NAMI and its home on the Web, NAMI.org. (Really, I see not the least attempt to create autonomy.)
For just one example, on the NAMI NH web site: if one clicks a link titled, “The First 48” hours on the page titled, “Bipolar Disorder,” we are redirected to the NAMI.org web site (a page titled, The First 48 Hours: Telling Your Family and Friends About Bipolar Disorder); and, there we can read:
“Although it is not entirely accurate, you can explain you have a chemical imbalance of the brain.”
http://www.nami.org/template.cfm?template=/ContentManagement/ContentDisplay.cfm&ContentID=37639&lstid=275
(So, one who is newly “diagnosed” as supposedly “bipolar” is taught to knowingly perpetuate the same old lies.)
On the NAMI NH web site, one can push a link for “Childhood bipolar” and be led directly to TheBalancedMind.org (Like NAMI, it was created by Pharma funding.) One of its featured “Scientific Advisory Council” members is Joseph Biederman, M.D. – the man who popularized “childhood bipolar” (i.e., is largely responsible for creating, in the U.S., a 4000% rise in such “diagnoses”); he is notorious for having taken 2.6 million dollars in what were initially undisclosed pharmaceutical company payoffs.
And, does the NAMI NH web site anywhere speak of the brain-damaging effects of psychopharmacological drugs?
I put the words, “side effects” into the NAMI NH search engine, and I’m led back to a number of documents all posted on NAMI.org.
This is from the first one I clicked on,
“It is quite likely that you will experience some side effects from taking your medication. It is important to
realize that all medications have side effects. Even such common and generally accepted medications,
such as aspirin or Tylenol, have side effects. You should discuss any side effects you are experiencing
with your psychiatrist. Sometimes a change in dosage or the addition of another medication will alleviate
the side effects. Side effects often become less severe after you have been taking the medication for
several weeks. It is important to realize that unless the side effects are severe, you need to give the
medications time to work…”
http://www.nami.org/Content/Microsites213/NAMI_Of_Franklin_County/Home199/About_Mental_Illnesses/AboutTakingPsychiatricMedications2.pdf
Ken, consider its quality of efforts, to educate people via its web site, I’m inclined to feel you are somewhat exaggerating the supposed great good of NAMI NH.
I presume you are not doing so deliberately.
Yet, I do wonder: what makes you feel that local NAMI organizations are independent and that NAMI NH consists of ‘empowerment movement’ allies?
Or, perhaps, I should ask you: What is your view of this word, “empowerment?”
In terms of mental health care, what should empowerment look like and/or lead to, in your view, ideally?
I tell you, in my view: empowerment means complete freedom to choose ones own means of developing wellness.
In my experience, NAMI gatherings provide no such sense of freedom; rather, they generate a palpable cult atmosphere; and, I feel certain, that there’s no way real empowerment will spread inside Pharma-funded social groups focused on ‘treating’ so-called “mental illness” – simply no way; that NAMI has not, by this late date, even begun to break free of the “brain disorder” lie (and, that it goes on promoting the “chemical imbalance” myth, as a supposedly useful story to tell people) seems perfect testament of this reality.
Pharma is bank-rolling the operation. One commenter says it’s 75% of NAMI’s budget. And, Pharma has long seen supposed “mental illness” as providing a lifetime product market. So, we should fully expect that NAMI will not be providing liberty for its slaves; but, great that you’ve found friends in NAMI; that’s all well and good; yet, NAMI is not an ally of those who are seeking to be self-empowered.
Just follow the money, and you’ll see why. Pharma is invariably pulling the strings.
I quite agree with the others who’ve commented in this thread, by expressing that same basic conclusion.
Excellent analysis, Jonah! Thanks!
Ken, do you remember Carlat’s piece “Dr. Drug Rep” that appeared in the NYT back in 2007? Don’t fool yourself. It does matter where the money comes from. Even if you make a very conscious decision to not let it matter to you. Nobody is all the time 100% conscious.
Another thing: is there maybe a third option between hating NAMI on the one hand, and having Tuesday dinner with the NAMI mommies? Is it maybe possible to do a thoughtful analysis of NAMI, like Jonah’s here for instance, and then, upon this analysis, to politely but firmly decline the dinner invite?
Last thing: there is a number of inconsistencies in your piece of which Jonah already has mentioned a few. The one that struck me the most is when you write: “In those days, Peggy recalled, NAMI families were at odds with the psychiatric establishment, who still blamed families,…” and you seem to agree that this of course was just so wrong of the psychiatric establishment. At the same time, you say you work for the trauma-informed distress model to be acknowledged. But if families are not to be “blamed” — and let’s face it, families were held responsible, yes, but I can’t see where for instance Laing, Basaglia, or even Theodore Lizd, *blame* families, and I can even less see how it is supposed to be outrageous to as much as touch on the possibility that family dynamics as much as might have contributed to the person experiencing crisis, not to mention to call somebody a “schizophrenogenic mother”, while it seems perfectly ok, even to you, to call the person in crisis “mentally ill” — then where does the trauma come from? If everything in the environment of the person in crisis is just beer and skittles, and always has been, then there can’t be any trauma, can there? Joining the NAMI mommies for Tuesday dinner, and, for the sake of peace and quiet — also one’s own inner, since nothing is better suited to stir up one’s own inner victim’s feelings of guilt than a NAMI mommy’s indignant “You don’t want to insinuate that it is my fault, do you?!” — and reconciliation, reassuring them that, oh no, no way it is their fault! just doesn’t add up with the trauma-informed distress model. You can’t have your cake and eat it. That said, I agree that hate, and blaming people telling them it’s all their fault, is not constructive. But it is just as little constructive to not *hold people responsible* for the *mistakes* they’ve made because they didn’t know better. In fact, it is actually hurting them, because it leaves them with the illusion that, because they already are perfect, they can’t do any better, that they can’t “recover”, and go on to help those, whom their mistakes have hurt, to recover.
At least Ken is open that he receives pay from NAMI. Seriously. I appreciate honesty!
I wish I could provide a link, but even NAMI admits the bio-model theory doesn’t decrease “stigma.” So why do they continue to promote it?
Oh, yes. Money. And being free to coerce our “loved ones” into an early grave. For their own good.
Duane,
I like a lot of what you had to say and I agree that NAMI needs to clean up its mess. Instead, they are creating more of a mess here in Ohio as you know from David. You need to know that NAMI/Ohio is getting very little support from constituents that really matter, like consumer/peers. Just yesterday, we learned from NAMI/Ohio that the Ohio Legal Rights Commission is opposing the NAMI-initiated legislation regarding involuntary out-patient commitment. In addition, the Ohio Empowerment Coalition, a statewide peer/consumer organization, published a position paper expressing serious concerns about the proposed legislation.
Here’s the way I see this NAMI thing. There are a lot of well-meaning people connected to NAMI that do not even know what NAMI advocates for. All they know if that they have troubled loved ones and are desperate for help by way of resources, direction and support. They are more focused on their situation and can’t or won’t look beyond it to see the bigger picture. I have worked in the community mental health system in Ohio for 35 years and I have come to know and love many people connected to NAMI. They are hurting and their loved ones are hurting.
As you well know, about 30 years ago the drug industry created the bio-genetic-chemical imbalance myth in order to gain big profits, and they were very successful. When an industry can take billions of dollars of fines on the chin, you know you dealing with big money, power and influence. We know that the drug industry is immensely powerful and terribly corrupt. And they know how to create markets for their products better than any other industry.
NAMI’s bio-genetic-chemical imbalance message is suspiciously close to the drug industry’s message (LOL!). And of course, this concept assures that the blame and focus stay on the “identified patient” and not on the family system. So guess who flocks to join groups like NAMI? I’m not saying that this describes every NAMI member or every family situation, I’m just saying it’s a magnet for these kinds of people, and there are a lot of them. Of course, there are a lot of us from dysfunctional families who are not connected with NAMI. We just have a very different way of seeing things, you might say, and can’t associate with NAMI.
Family systems theory suggests that in many cases, one of the family members takes on the identity of the “identified patient”. In that role, they are the focus of attention rather than the whole family system which might be really dysfunctional. But they deny that and blame “the patient” who now has to be managed and controlled. I’m not saying that all “mental illness” is a result of living in a dysfunctional family but that is often a big contributing factor. I also need to add that anyone familiar with the trauma literature understands how telling trauma survivors that they have a brain disease invalidates their experience and is an inaccurate and immoral message. Child abuse is not rare and it happens inside and outside families (priests, coaches, babysitters, teachers, etc.), and for many victims it happens in both realms.
In addition, many times people in organizations like NAMI allow the organization to do most of the thinking for them and they don’t always possess the best critical thinking skills, if you know what I mean. Then they become easily exploited, like by those who have a financial interest in the matter. Drug companies come to mind. The ties between NAMI and the drug companies is, as you know, well established and corruption in the pharmaceutical industry is rampant. Add to that the problem of the media, politics, and so on.
So for me, a lot of this comes down to trying to understand the suffering of both individuals and families, and our response to this suffering, in the context of all this. But back to the mess that needs cleaned up.
The first step NAMI needs to take is to cut its ties with the drug industry and other profit-seekers. No more selling out or exploitation of human suffering allowed. The next step NAMI needs to take is to closely examine its beliefs and assumptions by looking at the current evidence. NAMI leaders and members need to spend more time on websites like MIA and listening to people like Allen Frances. Then NAMI needs to publically apologize and own up to its mistakes in judgment and the resulting consequences, unintended as they may have been. If the organization can survive such a cleansing, it may then be in a position to redefine and reconstruct itself.
This is a tall order and requires humility, self-examination and courage. Time will tell if these characteristics reside in enough of the members and leaders of NAMI to turn the tide.
That’s my 2 cents, Duane. And thanks to Ken for kicking this discussion off.
Steve
Steve,
I’ve just posted an op-ed piece on this site that addresses the idea that many NAMI parents like NAMI because the biochemical model of the illness absolves them from blame. Please swing by and take a look. I have also this past week undergone three hours of a grueling Family Constellation with my husband, my son and my son’s psychiatrist. I have always thought – and I could be wrong – that Family Systems that you mention in your comment and Family Constellation therapy are more or less the same thing. When you said that the labelled person is the “designated patient” you seems to imply that the rest of the family undergoing the therapy is encouraged to continue seeing the relationship this way, and this is not at all what Family Constellation therapy is about. The labelled person takes on the burden of guilt that the rest of the family probably isn’t even aware of. This is an intergenerational thing, going back several generations. FCT through a complex drama engaged in with the “patient” and the family members exposes how family trauma is hidden. The sensitive person is the one who “knows” the family secrets, without even being properly aware of them. As I said, our FCT was grueling, but the point was to bring our hidden traumas out into the open in the expectation of lifting the burden from the designated patient, as you term it.
Rossa,
I did swing by and read your op-ed piece and was very moved- what an incredible journey you have been on. The reason I brought up family systems theory to support my point was only to use it as one example of many factors that contribute to the problem of NAMI and similar advocacy groups, and to not loose sight of that when we discuss big pharma and corruption. There is also the interpersonal, human factor and the realm of family dynamics. So I was using the term “identified patient” more in a generic sense. I’m not qualified to respond to your questions about comparing family systems theory and the Family Constellation approach you mentioned. I was simply trying to say there are a lot of dynamics at play, and some of them exist within the family system as well as in society. In my years as a counselor I worked mostly with individual clients who had trauma histories. It was often difficult to engage the whole family system, although many times that would have been the ideal approach, but not always. I hope FCT is helpful to your family and wish you the best.
Some people like the chemical imbalance/biological model because it absolves them of blame, as you suggest. But for me, I see it more as a common human characteristic to look for problems and solutions “out there”. Many people, unfortunately, do not have the courage to look inside themselves for how they may contribute to a problem and/or its solution. In their mind, the problems and solutions lie outside – its one way we avoid discomfort. Which is a real problem in our “need to feel good all the time” society. Life is hard and painful sometimes. Family life can be difficult – my parents weren’t perfect, but my parents had parents too. I hope I can be a little bit of an improvement as a parent myself.
So for me, I try to spend a lot of time in self-reflection and looking for ways that I can contribute to solutions that will help to reduce, and better yet transform, human suffering, starting with my own. It sounds like a journey that is in many ways perhaps similar to yours.
Best,
Steve
Thank you, Steve.
I enjoyed reading what you had to say as well.
You make some good, strong points.
My best,
Duane
I still have a problem with this:
“Author’s Warning: If the word NAMI sends you into uncontrollable rage, spare yourself. This is about NAMI people who are open to our movement. It’s not intended for readers who already hate them.”
Frankly that was offensive, condescending and feels like a bait line to invite a heated discussion, all of the things we are supposed to be monitoring ourselves for per the new policy guidelines. It’s snarky and uncalled for, and after reading so many comments here that are eloquent and spot on, I see that bait failed.
I have a problem with the “our movement” part.
Who is “our movement?”
Because if that movement is entangled with using NAMI to do police training, or any other educational program I personally would not want to be and am not associated with that group.
As a mother in the system for over a decade, the most telling thing I can share here is how I needed support and did NOT take it from NAMI because I did not want to be associated with that group, their belief system based on meds as “help” is why, and it has not changed. Then over the years I find out about the pharma funding of NAMI and my personal feelings were again, no association with that group. Just because the people who started it decades ago wanted support does not mean their group (NAMI)is worth supporting, in all reality NAMI promotes the very thing many people are against–forced medications, compliance for “treatment” as a way to gain housing, all of it. There is no reason to say things like “support NAMI, let’s help them change”. Walk away from a group instead that has no problem being in bed with pharma, walk away from a group that condones Fuller Torrey and his pro forced out patient drugs as treatment ideals–all of the big PR machine groups that are pro med are connected to NAMI–sometimes it takes guts to stand alone up against all of that. I have done it and am glad I have.
This could be compared to people not wanting to be associated with Scientology. Isn’t that what comes up time and time again, when people are outspoken, they get called Scientologists? would Ken, for example have no problem taking funding from that group to pay for the training of police?
I’d train them for free myself. If that was my gig, it would be out of my own pocket before I ever took pharma conflicted NAMI money. I don’t run with packs like that.
This is all my opinion.
Its sad to see “debate” revolve around and “unconscious” us & them axis? Does it really get us anywhere? Does it simply enhance the status-qua?
In the aftermath of WWII, some brilliant seminal ideas were born in America, with a view to addressing the nature of human functioning, so that such carnage and misery might be avoided.
Sadly, most of that fearless thinking was reject because of “implicit,” notions of shaming & blaming. The Brad’s slings (rage) and arrows (shame) of outrageous fortune.
Thinking that led to such keen insights as Donald Nathanson’s “compass of shame,” which gives a brilliant interpretation of our unconscious reactions in the anxiety of the lived moment.
Murray Bowen’s contribution to family therapy, is colossal in its scope and visionary awareness, yet sadly we were not ready to accept it, and move beyond our reactions towards better reasoning.
Please read the above comments and see the unconscious nature of “emotional projection and triangulation process,” Bowen describes.
Why are Americans going to Finland to study a model of family functioning, born in their own backyard?
“The triangling process in a large family will help illustrate the process in society. It may begin with conflict between a parent and child. When another takes sides emotionally, he is potentially triangled.
When he talks (to influence others) or he takes action based on feelings, he is actively triangled. Each person who becomes involved can involve others until a fair percentage of the group is actively taking sides.
The controversy is defined on “right” and “wrong” issues, and often as victimizer and victim. In societal conflict, those who side with the “victim” are more likely to demonstrate and take activist postures. Those who “feel more responsible” for the total group will side with the parental side. They are more likely to stay silent or take action in letters to the editor, or to actively counteract the activists.
One interesting group of activists is made up of members of professional and scientific organizations who attempt to use knowledge and social status to further entangle the triangular emotional system. To summarize the process, it begins with emotional tension in a bipolar situation, it spreads by involving emotionally vulnerable others, it is fed by emotional reactiveness and response to denial and accusation and it becomes quiescent when emotional energy is exhausted.” _Murray Bowen.
There will probably be no further comment below mine, because as Murray predicts, the emotional energy has become quiescent?
David,
Is there not room in any worthwhile revolution for both warriors and poets?
Duane
An (obvious_ non-violent “revolution”…
Full of passion.
Both the warriors and poets striving for some lasting peace….
Real peace, with justice.
Surely, you don’t want to toss out all the warriors, do you?
Duane
Surely, transformation can take place in our own hearts, while we take bold steps to improve the world we share with others….
Surely, we don’t have to settle on being sucessful with only one, while avoiding the other.
If we toss out the warriors.
We’ll be left with only poets.
Maybe the “movement” should be careful what it ask for?
Duane
There is a time for revolution:
To every thing there is a season, and a time to every purpose under the heaven:
a time to be born, and a time to die; a time to plant, and a time to pluck up that which is planted;
a time to kill, and a time to heal; a time to break down, and a time to build up;
a time to weep, and a time to laugh; a time to mourn, and a time to dance;
a time to cast away stones, and a time to gather stones together; a time to embrace, and a time to refrain from embracing;
a time to get, and a time to lose; a time to keep, and a time to cast away;
a time to rend, and a time to sew; a time to keep silence, and a time to speak;
a time to love, and a time to hate; a time of war, and a time of peace. – Book of Ecclesiastes
And I say the time for a non-violent revolution in mental health care is NOW!
Duane
Is it “revolution” or “realization” that needed, Duane?
What does it mean to “awaken” and realize that there is nothing new under the sun, as we wake each morning & “act out” our unconscious arousal needs?
Perhaps its all about chemistry, when we see a bigger picture?
Underlying cognition, is the essential need of organismic homeostasis?
“LIFE AS HOMEOSTASIS
Living organisms are self-replicating and self-sustaining dynamic chemical systems. They obtain energy from, and information about, their environment – including its chemical, physical, geological, and biological components. A feature that distinguishes living from non-living matter was identified by Claude Bernard.
This is homeostasis – the maintenance of a constant internal environment despite changes in the external environment. A second feature of all known life, first proposed explicitly by Schleiden and Schwann, is that living things are composed of spatial compartments, called cells.
Cellular homeostasis requires a system of integrated feedback and feedforward, producing adaptive responses to, and anticipation of, ultimately uncontrollable changes in the properties of the outside world.
As life evolves, it extends its reach by maintaining its constant internal environment in new external environments, previously inhospitable. _John F. Allen, Ph.D. “Journal of Cosmology, 2010.”
As self-awareness evolves, it extends its reach by maintaining its constant internal environment in new passing moments?
Origins, Abiogenesis and the Search for Life in the Universe. http://www.amazon.com/dp/0982955219
David,
The homeostasis you describe obviously involves an internal healing.
I know an individual who by all counts would have to be considered a “genius”… certainly, in the area of physics.
When I was a young man, he and I had a conversation.
He described a theory that I’ll never forget.
Namely, that the universe may go on for infinity – inside us, and outside us.
The “homeostatis” you describe may involve transformation, movement that is much like those that occur outside our beings – and the episode that appears so peaceful may involve some “battles” that none of us can begin to comprehend – physical, emotional and spiritual… Look no further than the “nature” we see around use, and the fight for survival… Nature, especially human nature is full of beauty, but not always pretty.
There is a time and place for ALL things.
Including revolutionary change – both inside and outside.
Duane
I understand how much you have invested Duane.
I understand how hard it is to let go of such an emotional investment.
Please consider how much American debate is immersed in its cultural history of “fighting?”
Of black hats & white hats?
Consider what Joseph Campbell is saying to each and every one of us, when he suggests we become motivated by “awe,” instead of the “awful” in “them.”
“The problem is that people have tried to look away from space and from the meaning of the moon landing. I remember seeing a picture of an astronaut standing on the moon. It was up at Yale and someone has scrawled on it,
So what?’
That is the arrogance of the kind of academic narrowness one too often sees; it is trapped in its own predictable prejudices, its own stale categories. It is the mind dulled to the poetry of existence. It’s fashionable now to demand some economic payoff from space, some reward to prove it was all worthwhile. Those who say this resemble the apelike creatures in 2001. They are fighting for food among themselves, while one separates himself from them and moves to the slab, motivated by awe. That is the point they are missing. He is the one who evolves into a human being; he is the one who understands the future.” _Joseph Campbell.
Is there really a territory “out there” where we see them?
Or is the territory within, emotionally projected onto them?
Can we pause & really FEEL these words?
Songwriters: ROGER WATERS, RICK WRIGHT
Us and Them
And after all we’re only ordinary men
Me, and you
God only knows it’s not what we would choose to do
Forward he cried from the rear
And the front rank died
And the General sat, as the lines on the map
Moved from side to side
Black and Blue
And who knows which is which and who is who
Up and Down
And in the end it’s only round and round and round
Haven’t you heard it’s a battle of words
The poster bearer cried…….
http://www.youtube.com/watch?v=vcG47CpsU6c
Can we become aware of how we “scan” these words for an emotional feedback that will maintain our (homeostasis)?
David, with all due respect, I don’t think you have understood the least of how much Duane has (and others in this comment thread have) invested. If you did, you might be able to let go of your own emotional investment here.
Marian, I do understand.
What is difficult to grasp, is the felt sense of what I said about “unconscious” scanning.
It happens beneath awareness and is what Porges means by “neuroception.”
The stimulus to the rational response is active before we even “think.”
Very difficult to understand, when we’ve been brought up in a Western culture, which prides itself on the power of cognition.
Your comment about my emotional investment is correct, as it mirrors yours yet from a different view.
As I’ve invited people to do before, read through any comment thread and see if you can spot this (homeostatic) response as people take out what they need from an essay or a comment and leave the rest.
Once you start to see what Bowen is saying, it becomes utterly predictable, which I do not mean as a judgment of anybody?
This is what Bowen is saying about how we function at an unconscious level, in a sea of “emotional re-activity & projections.”
Please try to feel your reaction, based on what Tomkins calls an ideo-affective posture?
Your “reaction” will be “this is bullshit!” Or thoughts to that “affect.”
Then read this again later & see what you think?
“Ideology and Affect/Emotion:
Now let me introduce the concepts of ideo-affective postures, ideological postures and ideo-affective resonance. (1) By ideo-affective postures I mean any loosely organized set of feelings and ideas about feelings. (2) By ideological postures I refer to any “highly organized” and articulate set of ideas about anything. A generally tolerant or permissive attitude would be an instance of an ideo-affective posture, whereas a progressive or democratic political position would be an example of an ideological posture.
(3) By ideo-affective resonance we mean the engagement of the loosely organized beliefs and feelings by ideology, when the ideo-affective postures are sufficiently similar to the ideological posture, so that they reinforce and strengthen each other.
Ideo-affective resonance to ideology is a love affair of a loosely organized set of feelings and ideas about feelings with a highly organized and articulate set of ideas about anything. As in the case of a love affair the fit need not be perfect, so long as there is sufficient similarity between what the individual thinks and feels is desirable, to set the vibrations between the two entities into sympathetic resonance.”
Exerts from “Exploring Affect,” (1995) by Sylvan Tomkins.
I’m sure people will dismiss what I’ve written here, yet why is it that I see “activists,” complaining that nothing changes?
I think David you need to be open to the possibility that what you believe and say is not viewed as meaningful or correct by others and that is just as “true” for them as what you espouse. Why should someone read Tomkins if they don’t agree that it has any meaning for them? If it doesn’t that’s ok right? If “unconscious scanning” is rejected as an inaccurate conclusion on your part, then it is. I have no doubt that you believe what you believe, please allow others to disagree and believe differently. That’s my point.
Well said David, thank you.
David, how do you “read” that I’m not open to others, in what I write? Do you read that I’m telling people, and not suggesting?
Why do you want to shut down any pointers to literature and education that doesn’t agree with your view of the world? These writers from the 1950’s that I refer to, are all American.
Fearless thinkers that a younger generation may not have heard of, particularly now that psychiatric training is mostly bio-medical.
Please tell what is irrelevant about me asking this question on this webzine.
“Why are Americans going to Finland to study a model of family functioning, born in their own backyard?”
Its a pointed question in relation to NAMI Mommies, as many who watch and listen to Roberts history of Psychiatry will understand.
Are you sure that you “know,” what every reader of this webzine, should & should not read? Are you certain that its me who is not open to possibility?
“please allow others to disagree and believe differently.” Your words my friend.
“I understand how much you have invested Duane.”
“I understand how hard it is to let go of such an emotional investment.”
Goodness David. How can you possibly “understand” these things for another person? Please stop being so arrogant and condescending in your posts. I challenge you to stop using cut and past quotes in your responses. This is not about talking to yourself. Try to move the discussion forward with concise yet meaningful dialogue. Park that enormous ego at the door. Thanks!
Emotional-Projection, I’m not you David.
The most read post of all time on my blog Involuntary Transformation is titled, “Advocacy, Ethics and Journalism: A MadMother’s perspective.” I started my blog on Septembr 4th of 2010 and posted my MadMother’s perspective on December 12th 2011 and it has had over 600 page views. http://involuntarytransformation.blogspot.com/2011/12/advocacy-ethics-and-journalism.html
My issue with NAMI is that it is silent about the harm done to people by the public policies and involuntary treatment legislation it lobbies so successfully for. My post, “MadMother: The Nation’s Voice On Mental Illness does not speak for me” gives many of the reasons I do not support NAMI, suffice to say, the lack of support is mutual. http://involuntarytransformation.blogspot.com/2011/08/friends-dont-let-friends-join.html
David Bates,
No two people percieve the world in the exact same way.
Our two perceptions are abviously quite different.
As someone who religiously practices meditation, every morning, every night, and throughout the day, I can appreciate some of what you’re saying here, but not all of it.
Why?
Because my perception of the “reality” I live in is unique, and different than yours.
I certainly understand that the human body, at a cellular level is constantly in search of homeostatis. So much, in fact that I believe that through proper nutrition, exercise, meditation, (prayer for those of us so-inclined), along with community, relationships, love… These things can take a person from living homeless on the street to finding success (however defined by an individual).
On the same token, the reality I live in is full of battles – the fight for life for starters, freedom from opression… These things are very real for me (and others like me).
On the cellular level, there are antioxidants that fight free radicals to prevent death –
http://www.rice.edu/~jenky/sports/antiox.html
On the political and spiritual level, there are those who fight for an end to opression. Martin Luther King was one of them –
http://www.americanrhetoric.com/speeches/mlkihaveadream.htm
You seem intent on making me see the world the way you do.
And I don’t.
And it’s likely I never will.
Duane
To Marian and David Ross,
Many heartfelt thanks for your kind words.
I suppose I often feel all-alone with my feelings.
I suppose I often wonder if I was really meant to have such strong emotions about freedom, especially as it pertains to the mental health system.
I only know that I do care deeply about all of this, that I’ve done my best to change the system, yet the timing does not seem right to do so. And I honestly don’t know why.
Duane
Duane,
You may feel alone in your feelings but you are not alone in your feelings. You are part of an ever-growing community who “have such strong emotions about freedom” as you do. I am also part of that community.
Keep doing the best to change things. and don’t loose hope. Like my friends in AA say: “I can’t but we can”. Whether that’s about one’s personal recovery or changing the world.
Don’t loose hope, keep caring deeply and stay connected to the community, Duane.
Steve
I needed to read those words today.
Thank you, Steve.
Duane
Duane, I understand how you feel along with hundreds of others, and how my argument is perceived as an abandoning of the struggle to defeat this “insane” pathologizing of nature by psychiatry.
Yet I do feel very strongly that nothing will change until people see that “the system” is inside each and every one of us. Its a system of self-preservation that will “logic & reason” every time, until we see what science is now bringing into view for the very 1st time in human history.
We are starting to see what all the great spiritual teachers have understood, and right now in this 21st century A.D. the intuitive knowing of the right-hemisphere is being understood by left-hemisphere logic and reason.
When I talk about how we scan and unconsciously “act-out” our self-preservation need, its not a flippant off the top of my head comment, its very real once you start to open your mind to it.
Learning to read “innate” postural behavior brings real presence to inter-relationship and answers Corrina West’s question, about how to approach people with the opposite view about medication.
We all “project” a self-preservation “system” out there, which is I ask people to read the comments and notice how it works at a level beneath conscious awareness?
Everybody takes from other people’s writing what they need to maintain a current level of homeostasis, which the “prime” driver of ongoing experience. Our responses to each other promote this basic survival need.
Once you begin to see it, I & other simply dissolves and you see yourself reflected back in other people’s behavior, because on the level of survival we all have the very same “innate” reactions.
Western sense-ability has become so fixated within the mind that we have lost our embodied sense of self, which why we all turning to meditation, in need to balance “the system.”
All the idealization in the world will make no difference, until we accept what we are and knowledge the way we really function. How we maintain the status-qua, with unconscious reactions.
I’m estranged from my four grown children because consensus reality has them convinced their father is insane. Their own need to belong and lack of self-awareness, sees them turn away from me rather than trust their own father.
The system “inside” causes such emotional misery in families, because we are yet to embrace the reality of human functioning. Yet this awareness is coming, despite our need to “act out,” our unconscious daily arousal cycle.
Heaven is waiting for us, right in front of our eyes. We are learning how to awaken and see it, for the very first time.
Be well.
David Bates, I thought this topic was about the NAMI mothers.
Good point.
SHere are they?
I haven’t heard a peep outta any of them!
Duane
typo
where are they?
“Why are Americans going to Finland to study a model of family functioning, born in their own backyard?”
Its a pointed question in relation to NAMI Mommies, as many who watch and listen to Roberts history of Psychiatry will understand.
Is this question relevant enough for you Stephany?
Did you not see it as you scanned my comments, unconsciously seeking a resource of self-empowerment?
Are we really rational, reasonable, intelligent human beings, who do not function at a primary emotional level?
“It is the ability to hold back, restrain and contain a powerful emotion that allows a person to creatively channel that energy. Containment (a somatic rooting of Freud’s “sublimation”) buys us time and, with self-awareness, enables us to separate out what we are imagining and thinking from our physical sensations. The uncoupling of sensation from image and thought is what diffuses the highly charged emotions and allows them to transform fluidly into sensation based gradations of feelings.
This is not the same as suppressing or repressing them. For all of us, and particularly for the traumatized individual, the capacity to transform the “negative” emotions of fear and rage is the difference between heaven and hell. The power and tenacity of emotional compulsions (the acting out of rage, fear, shame and sorrow) are not to be underestimated. Fortunately, there are practical antidotes to this cascade of misery. With body awareness, it is possible to “deconstruct” these emotional fixations. (p, 322)
Through awareness of interceptive sensations (i.e., through the process of tracking bodily sensations), we are able to access and modify our emotional responses and attain our core sense of self. A first step in this ongoing process is refusing to be seduced into (the content of) our negative thoughts or swept away by the potent or galvanized drive of an emotion, and instead returning to the underlying physical sensations. At first this can seem unsettling, even frightening. This is mostly because it is unfamiliar–we have become accustomed to the (secondary) habitual emotions of distress and our (negative) repetitive thoughts.
We have also become used to searching for the source of our discomfort outside ourselves. We simply are unfamiliar with experiencing something “as it is,” without the encumbrance of analysis and judgment. As the sensation-thought-emotion complex is uncoupled, experiencing moves forward toward subtler, freer contours of feeling. Eugene Gendlin, the originator of the term “felt sense,” sums this up with, “Nothing that feels bad is ever the last step.”
This experiential process involves the capacity to hold the emotion in abeyance, without allowing it to execute in its habitual way. This holding back is not an act of suppression but is rather one of forming a bigger container, a larger experiential vessel, to hold and differentiate the sensations and feelings. “Going into” the emotional expression is frequently a way of trying to “release” the tension we are feeling, while avoiding deeper feelings. (p, 323)
With containment, emotion shifts into a different sensation-based “contour” with softer feelings that morph into deepening, sensate awareness of “OK-ness.” This is the essence of emotional self-regulation, self-acceptance, goodness and change. (p, 324)
From a functional point of view, bodily/sensate feelings are the compass that we use to navigate through life. They permit us to estimate the value of the things to which we must incorporate or adapt. Our attraction to that which sustains us and our avoidance of that which is harmful, are the essence of the feeling function. All feelings derive from the ancient precursors of approach and avoidance, they are in differing degrees positive or negative.
Sensation-based feelings guide the adaptive response to (e)valuations. Emotions on the other hand, occur precisely when behavioral adaptations (based on these e-valuations) have failed? Contrary to to what both Darwin and James thought, fear is not what directs escape; nor do we feel fear because we are running from a source of threat. The person who can run freely away from threat does not feel fear. He only feels danger (avoidance) and then experiences the action of running. It is solely when escape is prevented that we experience fear. Likewise, we experience anger when we are unable to strike our enemy or otherwise resolve a conflict. (p, 327)
Working at Columbia University in the 1940s and 50s, Nina Bull conducted remarkable research in the experiential tradition of William James. In her studies subjects were induced into a light hypnotic trance, and various emotions were suggested in this state. These included disgust, fear, anger, depression, joy and triumph. Bull discovered that the emotion of anger involves a fundamental split. There was, on the one hand, a primary compulsion to attack, as observed in tensing of the back, arms and fists (as if preparing to hit). However, there was also a strong secondary component of tensing the jaw, forearm and hand. This was self-reported by the subjects, and observed by the experimenters, as a way of controlling and inhibiting the primary impulse to strike. (p, 332)
In addition, these experimenters explored the bodily aspects of sadness and depression. Depression was characterized, in the subjects consciousness, as a chronically interrupted drive. It was as though there was something they wanted but were unable to attain. These states of depression were frequently associated with a sense of “tired heaviness,” dizziness, headache and an inability to think clearly. The researchers observed a weakened impulse to cry (as though it were stifled), along with a collapsed posture, conveying defeat and apparent lethargy.
When Bull studied the patterns of elation, triumph and joy, she observed that these positive affects, did not have an inhibitory component; they were experienced as pure action. Subjects feeling joy reported an expanded sensation in their chests, which they experienced as buoyant, and which was associated with free deep breathing. The observation of postural changes included a lifting of the head and an extension of the spine. These closely meshed behaviors and sensations facilitated the freer breathing.
Understanding the contradictory basis of the negative emotions, and their structural contrast to the positive ones, is revealing in the quest for wholeness. All the negative emotions studied were comprised of two “conflicting impulses,” one propelling action and the other inhibiting (thwarting) that action. (p, 333)
In addition, when a subject was “locked” into joy by hypnotic suggestion, a contrasting mood (eg, depression, anger or sadness) could not be produced unless the joy “posture” was first released. The opposite was also true; when sadness or depression was suggested, it was not possible to feel joy unless that postural set was fist changed. (p, 334)
A direct and effective way of changing one’s functional competency and mood is through altering one’s postural set and thence changing pro-prioceptive and kinesthetic feedback to the brain. Hence, the awareness of bodily sensations is critical in changing functional and emotional states. (p, 337)
Just how does posture alter one’s mood and affect a lasting change? Intense emotions occur only when emotional action is restrained. Or said in another way, it is the restraint that allows the postural attitude to become conscious, for the attitude to become a feeling-awareness. What Nina Bull deeply grasped, is the reciprocal relationship between the expression of emotion and the sensate feeling of emotion.
When we are “mindlessly” expressing emotion, that is precisely what we are doing. Emotional reactivity almost always precludes conscious awareness. On the other hand, restraint and containment of the expressive impulse allows us to become aware of our underlying postural attitude. Therefore, it is restraint that brings feelings into conscious awareness. Change only occurs where there is mindfulness, and mindfulness only occurs where there is bodily feeling (I.e., the awareness of the postural attitude)
While physical feelings are both punitively and qualitatively distinguishable from emotions, both derive ultimately from the instincts. The five categorical emotional instincts described by Darwin are fear, anger, sorrow, disgust and joy. However, feelings, as the consciousness of a bodily attitude, come in a virtually infinite range and blend. The Darwinian emotions correspond to distinct instincts, while feelings express a blending of (sensate-based) nuances and permutations.
In addition, bodily feelings embody a relationship between an object or situation and our welfare. They are, in that sense, an elaboration of the basic affective valances of approach and avoidance. Feelings are the basic path by which we make our way in the world. (p, 338)
Trauma and Spirituality:
In a lifetime of working with traumatized individuals, I have been struck by the intrinsic and wedded relationship between trauma and spirituality. With clients suffering from a daunting array of crippling symptoms, I have been privileged to witness profound and authentic transformations. Seemingly out of nowhere, unexpected “side effects” appeared as these individuals mastered the monstrous trauma symptoms that had haunted them-emotionally, physically and psychologically. Surprises included ecstatic joy, exquisite clarity, effortless focus and an all-embracing sense of oneness. (p, 347)
“The life of feeling is that primordial region of the psyche that is most sensitive to the religious encounter. Belief or reason alone does nothing to move the soul; without feeling, religious meaning becomes a vacant intellectual exercise. This is why the most exuberant spiritual moments are emotionally laden.” _Carl Jung.
At the right time, traumatized individuals are encouraged to and supported to feel and surrender into immobility/NDE states, states of profound surrender, which liberate these primordial archetypal energies, while integrating them into consciousness. In addition to the “awe-full” states of horror and terror appear to be connected to the transformative states such as awe, presence, timelessness and ecstasy. (p, 353)”
Exerts from “In an Unspoken Voice” by Peter Levine PhD.
Ken, you’re certainly correct in pointing out the state-level NAMI chapters vary in their ideologies, that not all of them buy into the oppressive philosophy and tactics of the national NAMI. As you point out, Connecticut NAMI was recently part of the successful effort to keep involuntary outpatient commitment out of that state. But that’s very rare – in most states, NAMI has been in the forefront of pushing these awful laws.
At its core, NAMI advances the biological brain disease theory, values “treatment compliance” over human rights, and can be downright hysterical in trying to keep those of us who have thrived by abandoning the toxic drugs from telling our truths. I can’t support an organization whose core philosophy I perceive as an attack upon the dignity and rights of my brothers and sisters. Your suggestion that we should forgive the harm they’ve done because they were duped is a poor idea. And what do you gain by labeling legitimate NAMI critics as “haters?”
I agree Darby. I also would like to know why this post was allowed to be published with such an inflammatory title and sub-title. The tone set in the “author’s warning” was just as inflammatory as comments that I could leave can get and be censored for doing so. The platform given here as an author, in my opinion should reflect the highest standards that Mad In America condones, as well as the posts should reflect the comment policy. The “author’s warning” was a cheap shot that the author got away with, by using it in a title of his post and that is not right.
As Darby stated, what does the author gain by labeling legitimate NAMI critics as “haters”?
That right there could have shut down the conversation, but myself and others chose to respond, and for me the reason was to educate whomever needed it on the internal fine print of just what NAMI is all about. I’ve given enough info in my comments including links that can define what they are about, the group was investigated by Senator Charles Grassley for funding questioning–the pharma companies they take money from to pay for Ken’s police training is money the companies earned on the backs of innocent victims. The illegal marketing of Zyprexa, Risperdal and more to teens and kids and elderly now holds a hand-slap by the DoJ fining those companies–and it’s too late the damage is done. Teens who may not have otherwise been placed on some psych meds were placed on them because of this illegal marketing. How does blood money sound? this is why I will never accept one penny from a pharma company for any reason, because, the industry continues to pay the doctors, to fund the advocacy groups, and I have a child injured by that business model.
I want to be able to write here what I’ve held back this entire time, and feel I should be able to respond to the author’s title here; after all he was looking for commentary as a result.
Well, honestly I find his title and subtitle insulting and rude.
This is all my opinion.
“I agree Darby. I also would like to know why this post was allowed to be published with such an inflammatory title and sub-title. The tone set in the “author’s warning” was just as inflammatory as comments that I could leave can get and be censored for doing so.”
Perhaps because we now entering into “real” debate which does not sweep reality under the carpet?
Ideo-affective postures, like anger set the cerebral “tone” of our reactive responses?
Kermit wants me to take my exchanges with David Ross into “private” email exchange, with a rational assumption that this would be good for group harmony.
Yet is this how maintaining status-qua actually works, as we sweep core realities of raw emotion, under the carpet?
Here’s a pdf of NAMI NH for one year annual financial report. This depicts a fully funded by pharma NAMI, not just your small town casseroles-at-meeting-support group. This is BIG business.
http ://www.naminh.org/uploads/docs/NAMINH-AR2009.pdf copy and paste it into your browser.
Grant Funders
AstraZeneca
Dartmouth College
Endowment for Health
GlaxoSmithKline
Lilly
Lincoln Financial Foundation, Inc.
NAMI National
NH Charitable Foundation
State of New Hampshire
The bottom line is that the pharmaceutical companies, by funding NAMI keep the medication-based medical model thriving. They are in business to make millions and millions of dollars and invest with funding for a reason!
Cash cows!
NAMI is one profitable non-profit!
Example–of why pharma wouldn’t fund a Soteria House project: Nothing to be gained by funding a non-medication based housing or care facility.
Stephany,
Amen.
It ain’t rocket science, is it?
Duane
NAMI is a disgrace to advocacy.
Yeah, fine. New Hampshire NAMI might have some bright sides, as the author seems to suggest, but a “NAMI Mommie” is a mommie I’m glad I don’t have. Any mother that feels the need to lobby the state to take away their childrens’ human rights is an obscene human being.
The most popular post on Involuntary Transformation by far, is “Advocacy Ethics and Journalism, A MadMother’s Perspective.” http://involuntarytransformation.blogspot.com/2011/12/advocacy-ethics-and-journalism.html#.UHT9gRXLSSc Here in Washington State Eleanor Owen is seen as some sort of hero—she’s no hero. Washington State mental health policy is straight out of Treatment Advocacy Center, and there is no consumer voice that is NOT NAMI affiliated. The laws are based on biases, and are prejudiced against those with a psychiatric diagnoses in the extreme…Once labeled with a mental illness, people have NO RIGHTS whatsoever. The drug companies fund the State’s “Behavioral Health Conference.”
One of the things that has not been mentioned is the one of NAMI’s programs Family to Family—This flagship support and educational program, like every other NAMI program is written in a biased manner to “educate” family members and the general public on how to “support the mentally ill” by “helping them to remain treatment compliant.” In effect, embedded in all of NAMI’s “educational” materials is the message that to be supportive, means to be coercive to encourage “treatment compliance.”
My point is, while it very well may be true that some affiliates are supportive of some people who have a psychiatric diagnosis in a non-coercive manner some of the time—ALL NAMI affiliates use this biased and factually incorrect “educational” materials to inform the public; and THAT is a real problem since they are so well funded and also function as unpaid lobbyists for the drug industry—at least they do here in Washington State. Eleanor Owen is over 90 and still a powerhouse in NAMI Washington still serves on various boards and committees—a couple of years ago her compensation for being the treasurer for NAMI WA was $90,000. not bad pay for volunteer work…I also have it on good authority that Eleanor Owen claimed that no independent consumer/survivors will ever be allowed to be involved in the Mental Health Transformation here in Washington State—She is either psychic, or she has WAY too much power—because thus far, it is only NAMI members who are allowed to participate at all.
If your child got sick and took penicillin and got worse due to an allergy to the drug would you yell at them for not taking it?
These drugs DO NOT WORK. It’s obvious to these mothers that their adult kids get worse and die young, but they don’t try to figure out why or explore options. Some–like Creepy Pete–are just power hungry control freaks. And they may have already marked the “sicko” out as the family scapegoat.
If the drugs are so magically effective how come no one taking them ever gets better? That question caused me to flee the Madhouse Without Walls.