Fireworks and heated debate were expected by many when Robert Whitaker recently addressed a group at the National Alliance on Mental Illness (NAMI) annual convention in San Antonio, Texas. NAMI has historically been criticized as a ‘front’ for pharmaceutical companies and Whitaker has been painted by many as ‘anti-psychiatry’ and ‘anti-medication’. The views are understandable. There were several pharmaceutical companies sponsoring and exhibiting at this year’s NAMI annual convention and the organization still receives funding for its operations from pharmaceutical companies, and Whitaker’s work is openly critical of both the American Psychiatric Association and the mainstream approach to psychiatric medication.
So why was Whitaker invited to the national NAMI convention and how did it turn out?
According to outgoing NAMI national Executive Director, Mike Fitzpatrick, “Having Bob Whitaker here was important. It is important to have dialogue about the use of pharmaceuticals. NAMI wants to make sure this dialogue happens. The NAMI tent is big enough for many perspectives.”
Whitaker was introduced by the President of the NAMI Board of Directors, Keris Jan Myrick, to a standing-room-only crowd of over 325 people. He started by explaining what led him to uncover the information that ultimately led to his books Mad in America and Anatomy of an Epidemic. He was seeking to confirm conventional wisdom about treatment for mental illness when he wrote an investigative journalism piece about a clinical trial that was taking people who had been diagnosed with schizophrenia off of their medications to see how they fared. Convinced that this was abusive, he sought to expose what was happening. Through a series of events, he came upon information that pointed to a story that was not being told. One study that he found was by the World Health Organization and it included the following statement: “Living in a developed country is a strong predictor for poor outcomes for schizophrenia.”
This line was pivotal for Whitaker. “People claim that I am ‘anti-psychiatry’ but the truth is that this sentence is why I started studying all of this. I thought it was shameful that we should have such poor outcomes.”
After explaining why he got interested in this topic, Whitaker went on to share research for his talk entitled “The Case for Selected Use of Neuroleptics.” Here is the description of his talk from the NAMI convention brochure:
“The usual standard of care for prescribing antipsychotics for people diagnosed with schizophrenia and other psychotic disorders is to use the drugs immediately and, at least with schizophrenia, to maintain use of the medication. However, a review of the long-term outcomes literature reveals that a selective-use protocol, which would involve using the antipsychotic medications in a more limited fashion, would produce superior results. Such a protocol would involve treating some first-episode patients without antipsychotics for the first few weeks, as well as supporting some patients, after their initial use of the medications, in going off the medications. Northern Finland adopted this selective-use protocol in 1992, and that region now has the best documented long-term results in the western world.”
Throughout the talk, Whitaker emphasized the importance of slow withdrawal and highlighted how most studies only look at abrupt withdrawal which can cause reactions that look like ‘symptoms’.
After presenting overviews of the research, Whitaker asked the question, “Do we as a country want to embrace a paradigm of care that is expensive, ineffective and – for many – harmful? Or, do we want a paradigm of care that supports people who want to come off of antipsychotics with help and support?”
Continuing, he said, “I am coming here with a story that is upsetting. I think NAMI should be congratulated for having me here.” There was a loud round of applause.
At the end of the presentation, Whitaker opened up the floor for commentary and questions.
The first was from a woman who brought up a point about the time that is needed for people to be able to reduce medication safely. She pointed out that in the 1950s, people could stay in the hospital for longer periods of time. Her experience was that people stay in the hospital for 5-7 days and come out with a prescription. In a distressed voice, she asked what is to be done about the information Whitaker presented.
Whitaker responded, “We have so much wrapped up in all of this. We believe that meds can stabilize people fast, so we discharge people quickly. We have put all of our eggs into one basket: meds, meds, meds. As far as ‘what do we do?, we have to continue to discuss this, to look at the painful things…. NAMI is a powerful storyteller in our society. If NAMI discussed this story, it could be game changing. We need to have places where people can go. The original meaning of the word asylum was ‘refuge’, and in the early 1800s, Quakers built asylums in the United States that provided people with a healing environment — fresh air, exercise, good food, and so forth. And historians who have studied Quaker asylums have concluded that their outcomes were better than we have ever had since.”
One man, a NAMI member and member of a NAMI consumer council, spoke up, “As a person with 37 years of lived experience with schizophrenia, what you are saying here about the poor outcomes has borne out in my life. I came up in the time of Thorazine and all those drugs. They were terrible. They were only good for eight months and then you had to find a new one. When I would try to stop taking them abruptly, I would become terribly psychotic, so I had to stay on them. Drug companies don’t look for what they can cure; they look for compounds they can sell you forever.”
Another man spoke of his son who started having auditory and visual hallucinations at age seven. He said that he and his wife were educated people who sought out every option and found that they ultimately needed to opt for medication. He said that even among people in the NAMI organization, they felt that their choice was controversial. He told Whitaker that he appreciated him coming to speak in such a balanced way and that it would be helpful to NAMI and people like him if we could come together and continue to discuss this topic in a balanced way with the goal of finding a unified voice to speak to legislators.
One of the audience members said he had come expecting that it would turn into a “firefight,” but that hadn’t happened at all. Whitaker said, “We all have the same shared interest, to do right by people that we love.”
One woman said of Whitaker’s website, www.madinamerica.com, “I’d like to thank NAMI for having you here… One thing I notice about the website is that people who are attracted to write there tend to be a self-selected group who really hate psychiatry. This inability to speak with a united voice is damaging our community.”
Whitaker said, “Sometimes I am uncomfortable with the overall sentiment on the website, in that we don’t have as much diversity of opinion as I would like. (ref: www.madinamerica.com). It’s a work in progress. We need to have a place for all voices. We want to have voices of people trying to grapple with what all of this means. It doesn’t have the breadth of writers we want to have. In the beginning, we had invited psychiatrists and others with more mainstream views, but critical comments by readers, which at times were overly personal, chased them away. We didn’t have the resources to manage comments so that the discussion remained civil. We’ve gotten much better with that.” He emphasized that historically, the voices of people being treated for mental health issues were not represented. “We’ve opened our website to that voice.”
The following day was the closing event and the annual NAMI business meeting. It was called, “The Many Faces of NAMI.” Myrick addressed the crowd and spoke of the importance of including many voices and hearing all perspectives. “When ‘I’ is replaced by ‘we’, illness become wellness.”
I for one am ready for more ‘we’ in this dialogue. I am a member and employee of my local NAMI affiliate and an avid reader of the Mad in America webzine. On a daily basis, I hold the tension of many points of view and constantly seek to find the places where these two tribes merge and where we can have more influence together than apart. I am seeking more ‘we’ on this journey of grappling with all of this. Are you in?
NAMI has done enough damage.
It needs to be replaced, IMO.
So, “No, I’m not in.”
Duane Sherry, M.S.
Retired Counselor
http:/discoverandrecover.wordpress.com
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And there’s a reason why NAMI (national) is considered a ‘front-group’ for Pharma. We need to begin to deal with the reality of where we are at, not some ‘warm and fuzzy’ let’s hold hands and sing ‘Kumbaya’.
Simply put, NAMI carried the water for drug companies that caused a load of grave injury – for millions. It is what it is. –
http://www.ahrp.org/cms/content/blogcategory/23/60/
Duane
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Agreed. No singing of Kumbaya or holding hands. We can’t pretend that the past didn’t happen. I get the feeling that the expectation is that we survivors are the “bad children” and that we’re the ones who need to get more in line with NAMI and what it wants. Biopsychiatrists are not going to quit drugging us nor free us just because it’s the right thing to do. They will have to be forced into turning loose of us. I guess that this is one of those opinions that is not diverse enough but so be it. If my opinion is a problem and not welcome here I can certainly go elsewhere to find the information that I need to carry on the struggle.
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Unfortunately like most progressive and left movements in this country there is a lot of talking and no action. On top of the fact this movement has no program or demands. It amazes me how so many writers on this site can over and over again say the same thing with a different spin: The drugs aren’t effective, they harm people, we need alternatives. It seems like no one wants to move forward until we get every little group and disparate faction on board so we can then create some utopian mental health system. Let me let you in on a little secret, this is not going to happen. The kicker is that the system is so rotten that it can be brought to its knees quite easily. It is not like we are confronting climate change. We are confronting a discredited, death riddled institution that hurts 95% of people who are exposed to it. Very frustrating.
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Would love to write for MIA. From everything I’ve heard, you need an invitation, though.
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Agreed too. As to why NAMI is perceived as a front group for Big Pharma, perhaps this inconvenient truth has something to do with it,
http://www.nytimes.com/2009/10/22/health/22nami.html?_r=0
“A majority of the donations made to the National Alliance on Mental Illness, one of the nation’s most influential disease advocacy groups, have come from drug makers in recent years, according to Congressional investigators.
The alliance, known as NAMI, has long been criticized for coordinating some of its lobbying efforts with drug makers and for pushing legislation that also benefits industry.
…
The mental health alliance, which is hugely influential in many state capitols, has refused for years to disclose specifics of its fund-raising, saying the details were private.
But according to investigators in Mr. Grassley’s office and documents obtained by The New York Times, drug makers from 2006 to 2008 contributed nearly $23 million to the alliance, about three-quarters of its donations.”
There were a couple of postings on the Whitaker talk at NAMI members’ websites (Pete Earley and Kathy Brandt) where some NAMI sympathizers had problem with NAMI being described as a front group of Big Pharma but none was willing to explain what is the current funding situation when it comes to NAMI.
I want to thank Bob for making it possible for people like me to express our views. If Mad In America were to suppress our voice, we would have no place to go.
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Hi, Duane,
I share much of your view of NAMI, but let’s be willing to applaud changes, no matter how small or how long overdue they appear. To use a Biblical reference, let’s look at Saul, the oppressor of many, having a conversion experience on the road to Damascus. He changed. NAMI can, too. I suspect that change won’t be long in coming. There is too much damaging information out there about pharma and the efficacy of medications in recovery. Sure, it’s good to keep up the heat on the organization, but also good to keep the doors open.
Best,
Rossa
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yes, thank you Rossa, I’m very happy to see dialogue happening. People change, fashions change, everything changes…I think it’s dangerous and short-sighted to assume they will not…that is how to stop dialogue immediately.
It’s clear people are listening and want a better way…and that things are changing.
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Rossa,
Sure, people change. I wouldn’t be a proponent of full recovery if I didn’t believe this.
But I think it’s foolish to ignore the reality of what continues to take place within NAMI, and to blindly join ranks with them.
IMO, it’s better to keep the door open – for NAMI members to join us. Not the other-way around, because they are still too embedded with pharma and conventional approaches.
Duane
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Rossa,
Yes, I remember the story of Paul (then Saul) – on the road to Damascus… fell off his high horse, as I recall.
A good lesson for all of us.
Duane
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Hi Rossa, Monica and Duane (who I always appreciate seeing on these blogs!), I would like to express my resonance with everyone’s mixed, hopeful, cautious and concerned responses.
While I’m certainly biased in that we’d love to see more NAMI families join Mother Bear, so Duane’s suggestion above sounds lovely and very unencumbered by past missteps, harms and questionable alliances, I also appreciate Robert Whitaker’s statement that we all share the purpose of wanting the best for those we love. It’s just how we go about doing that and is it the best? As I parent, I know I don’t always know the answer to that. When we don’t know these answers at the organizational level, and push for policies, perhaps the ramifications when we are misguided are writ large.
I do want to share that this blog’s author Claire, is a remarkable woman who is working for change not only in her current position at our local NAMI chapter, but in so many areas of reform. She is a peer, a wellness advocate, a brilliant young woman, and has a big healing vision.
We’re very glad that she is involved in the local NAM where Mother Bear is headquartered as it makes reaching out to like-minded families much easier.
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I too have given NAMI many opportunities over the past 15 – 20 years. I’ve gone to California conferences – even to a national one – and sensed that the ‘consumers’ were the passive recipients of everyone else-s “care”… as though we/they ‘didn’t know better’.
This bothered me, because I kept getting the felt sense that, as a “consumer”, I am *expected* to be that way. It never fit. It chafed, yet what was I to do… there was no one else there who seemed to exhibit the spirit I felt within.
I even did that “peer to peer” training and found it (a 3 ring binder, etc.) ‘canned’. The “take your meds” really stuck in my craw, as I had just gotten off all of mine, “rough justice” style a few months before… and finally could FEEL for the first time in 25 years.
At the last CA NAMI conference, I would loved to have decked a psychiatrist for advocating staying on meds. Instead, I went into the lackluster exhibit hall and started asking people there if ANYONE knew any other group… with LIVING PEOPLE who had more FIRE IN THEIR BELLY?
(OK – maybe not the exact words, but… )
One lady said, “There’s a conference called the Alternatives conference. I think its in Portland this year.”
I Googled “Alternatives conference Portland”.
As I read the materials, I felt like I had died and gone to heaven. The materials absolutely, INFINITY PERCENT, spoke to me.
I went… I saw… I listened … I met … It was like dying, going to heaven …
The difference between what I experienced in NAMI with what I experienced at Alternatives is the difference between pretending Crisco is ice-creaming (trying to enjoy each…. scoop), and eating real Ben and Jerry’s.
NAMI, like Crisco, has uses … but for someone who lives with ‘mental illness’ to find something of value there is like trying to enjoy cold Crisco as ice-cream.
Before anyone living with ‘mental illness’ finds real benefit from NAMI, the deep issues that have not been discussed must be aired fully and heard. I deal with depression … NAMI never, ever, came even remotely close to understanding an experience like mine.
I am guessing the *only* reason they even listened to Mr. Whitaker is because of ‘the handwriting on the wall’, that he and others put there – the very handwriting they have ignored, covered up, denied.
I only WISH, fervently WISH, that people stopped regarding them as “America’s voice on mental illness” or whatever the phrase is. They NEVER asked me; they NEVER listened to me.
THEY NEVER REPRESENTED ME.
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I suppose I’m a little disappointed by Whitaker’s response to the “anti-psychiatry” accusation.
These voices that Whitaker apologizes for and promises to moderate more, that he blames for blocking the potential for more diversity by chasing others away, turning them off or whatever — these are the voices of outrage. These are the voices of the powerless who have been traumatized, damaged and discarded as the irreparably “abnormal” and “defective”.
One who wants to have a civil discussion and make real and lasting improvements has to first ask “Why?” and then listen. Before the non-traumatized and abused can discuss things in a “positive” light, they must listen to the absolutely reasonable, legitimate and even verifiable voices of those who have been mistreated. The voices of MIA are the tip of the iceberg. We should be asking “How must our treatment of the “mentally ill” change in order to ensure that such damage and hurt is not caused, and is psychiatry capable of reforming itself?”
That psychiatrists shun this cite, for the most part, shows an unwillingness to become critically self-aware of their own profession. If the interest is in proper care, then MIA.com should be a part of every university curriculum. Those who are truly scientific and truly learned do not dismiss unpleasant information, they seek to understand it — doctors try to remedy it. The willfully ignorant choose to ignore it.
The system as it stands created this problem, let’s not be afraid to engage with our own creation. Listening is the beginning of building an Alliance. Engagement is the responsibility of an Ally.
I wish Robert Whitaker would have said something along these lines.
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The truly good psychiatrists, few though they may be, do come here to see what’s going on. But you are correct in that most of them don’t want to hear anything that goes against their interpretation of what’s acceptable and what isn’t.
Since most of them believe that they’re the experts on everything, especially emotional and psychological distress, which they want to label and pathologize, they’re completely unwilling to put themselves in any position that demands an open and learning attitude on their part. They have nothing to learn, they’re the experts. Too bad if they get their feathers ruffled; we will never be able to convince them to meet us on common ground to discuss anything. We are beating our heads against the brick wall when we think that we can get them to sit down with us and discuss the reality of what is. They are the experts and how dare us to even raise any questions about anything, after all, we’re the lowly “patients” who must be taken care of like children, all for “our own good” of course. Wowie, I’m cynical today. And so it goes.
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I have certainly seen local NAMI chapters who are very supportive of real change, and others (probably most) that are very married to the current paradigm. NAMI as a national group has been quite reprehensible, and I would really want to see some evidence that they are really distancing themselves from their pro-pharma propaganda that has characterized them over the years. That being said, I’m not opposed to a rapprochement with NAMI if there is a genuine desire to explore alternatives. But it would require some acknowledgment of the damage done and some effort to make amends to those who were harmed by NAMI’s historical rhetoric. I admit, I’m skeptical that such a thing could happen, and I also agree 100% that a “forgive and forget” attitude isn’t realistic, given the real harm that NAMI has done to those it has purported to help.
Having Ms. Myrick chairing the board does help me believe that some change is possible. And I don’t want to write off the entire rank-and-file of NAMI based on its historically misguided leadership. As the stories in the article clearly indicate, there are some allies in the NAMI ranks. But the leadership has got to move off their pro-drug, pro-incarceration, E. Fuller Torey “Anosognosia” kick for any real collaboration to happen.
—- Steve
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Steve,
You make some good points.
I just don’t understand why NAMI (any affiliate or national) could possibly have the arrogance to think they are needed for a paradigm shift.
IMO, we do not need to persuade NAMI, or collaborate with NAMI, or join NAMI.
We can *replace* NAMI!
It seems to me this is happening already to a large extent.
Duane
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Can’t argue with you. What’s that saying about making a “silk purse out of a sow’s ear?”
—- Steve
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I suppose I’m not interested in watered-down versions of the really important issues:
A) Least restrictive, most therapeutic options
B) Fully-informed consent
C) End to forced treatment without due process
These things are hardly part of the NAMI national platform. There may be a few talking the talk, but the organization is not walking the walk.
So, IMO, those who are interested in changing can join us.
Duane
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In response to “One thing I notice about the website is that people who are attracted to write there tend to be a self-selected group who really hate psychiatry. ”
Its usually those of us who have been on the sharp end of its treatments. I was given medication for insomnia and was told its “safe”, it turned me into a living zombie then when I went to quit taking it I had withdrawal reactions from the very center of hell. I goto the hospital complaining of these withdrawal reactions and they are taken as a symptom of some psychiatric illness and I am then kidnapped and coerced behind locked doors with the threat of injections and long term lock up to ingest more of the same class of chemicals that made me sick in the first place ! They even did “mouth checks” to be sure I swallowed there brain disabling pills behind double locked doors ,thick plexiglass, video cameras… and all that nasty stuff.
After being treated like that you would have to be insane NOT to hate psychiatry.
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You are so right!
This is the experience of numerous people here in Brazil. Half the population of Rio de Janeiro are hooked to Klonopin the most difficult benzodiazepine to withdraw.
The withdrawal symptom is terrible and psychiatrists start giving other drugs such as antidepressants, mood stabilizers or antipsychotics.
People end up having numerous side effects that are “diagnosed” as mental illness.
This is happening since 1989 when they come up with the idea that diazepam is not “strong enough”.
One of the side effects of Klonopin, clonazepan, is panic attack.
Numerous people are having panic attacks due to clonazepam.
This is criminal and NAMI, FDA and all of those who are involved in this crimes are quiet aware that they are not drugging only a nation, America, they are drugging the world.
I met a Japanese dermatologist who claimed he was prescribing Paxil to heal acne because stress is not good for the skin.
I told him about the heinous side-effects and guess what he said?
“This drug is helping millions of people.”
This is the Big Pharma phrase to end any discussion.
What about the fourth phase of clinicals trials?
Surveillance after the drug is on the market.
They would have to listen to… the patients, don’t they?
This is not “scientific”. The word of the patient is… anecdotal evidence.
This is surreal! Unfortunately destroying people’s body, mind and soul.
I would be rich if I gained a buck every time I did read: “This drug destroyed my life.”
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The fact that the author of this blog has worked for many BIG PHARMA companies does not seem to bode well for her advocating for nondrug “treatments” for mostly bogus “mental illnesses.”
But, I must say her post is a great improvement over the nasty, hateful comments on Pete Early’s blog about Bob Whitaker’s talk to NAMI.
But, in the end, actions speak louder than words, so time will tell.
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Thank you for this piece! This is an extremely loaded topic for me. I am grateful that Bob was invited by NAMI, and that it seems to have served a bridge-gapping purpose. That said, I am still recovering from layered trauma due to my intense involvement with NAMI for several years in Salt Lake City, UT. I am still involved peripherally, and my local chapter has made efforts that reflect Bob’s efforts to bridge gaps and portray a more balanced picture of mental health issues to our community.
I was deceived about medication as a “consumer” and teacher in the NAMI programs, and I taught those lies to other “consumers.” I did not know of NAMI’s relationship with the pharmaceutical industry, and I was desperate for help myself. Thankfully, the abiding relationships I gained through NAMI were not destroyed. However, I am still recovering from the layers of deception in the organization – from a local to a national (and possibly beyond) level. Unfortunately, our local NAMI director had not resolved her own personal issues, so she was a damaging influence in our chapter. It was an added complication to the already complex issues we were dealing with at the time. One day I may become more involved again, but for now I do not have enough trust in NAMI as an organization that supports true healing. I am grateful for the current leaders in our chapter who are very aware of Bob Whitaker’s work and related efforts to understand mental health in a more balanced way. Thanks again for posting this.
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I wonder why NAMI don’t invite psychiatrists such as Peter Breggin, David Healy, Bruce Levine and people like Jim Gottstein… all these great people who have been work hard to show what these drugs are really doing.
The number of people is huge but they are not invited.
Why NAMI? Why?
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“The well-known World Health Organization collaborative International Study of Schizophrenia found, for example, that persons in poor countries diagnosed with schizophrenia enjoyed significantly better outcomes in a broad variety of domains including symptoms, disability and social functioning.”
I believe that WHO forgot to make a research in Brazil or maybe the organization doesn’t include Brazil as a poor country.
The treatment that those with schizophrenia receive in Brazil is the same Americans do.
All the drugs sold in US are being used in Brazil.
Clinical trials are done in mental institutions but they “forget” to tell the patients that they are taking part on a clinical trial.
The regulation we have in Brazil is based on FDA with the exception of advertisements. We don’t have ads at the TV.
The corruption is the same.
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I think that the study they did was from a few decades ago and from what I hear psychiatry is on the move everywhere. World Network of Users and Survivors of Psychiatry has called forced psychiatry a harmful cultural practice that is globalizing and driving out traditional and indigenous healing practices.
http://www2.ohchr.org/english/bodies/cedaw/docs/cedaw_crc_contributions/WorldNetworkofUsersandSurvivorsofPsychiatry.pdf
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Anybody in Mad In America who thinks that there is a common ground to be found with NAMI is referred to its public policy proposals, in particular this one about involuntary so called “treatment”, point 9.2,
http://www.nami.org/Template.cfm?Section=NAMI_Policy_Platform&Template=/ContentManagement/ContentDisplay.cfm&ContentID=38253
“(9.2.5) Involuntary commitment and court-ordered treatment decisions must be made expeditiously and simultaneously in a single hearing so that individuals can receive treatment in a timely manner. The role of courts should be limited to review to ensure that procedures used in making these determinations comply with individual rights and due-process requirements. The role of the court does not include making medical decisions.”
“(9.2.7) States should adopt broader, more flexible standards that would provide for involuntary commitment and/or court ordered treatment when an individual, due to mental illness
(9.2.7.1) is gravely disabled, which means that the person is substantially unable, to provide for any of his or her basic needs, such as food, clothing, shelter, health or safety; or
(9.2.7.2) is likely to substantially deteriorate if not provided with timely treatment; or
(9.2.7.3) lacks capacity, which means that, as a result of the serious mental illness, the person is unable to fully understand–or lacks judgment to make an informed decision about–his or her need for treatment, care, or supervision.”
“(9.2.8) Current interpretations of laws that require proof of dangerousness often produce unsatisfactory outcomes because individuals are allowed to deteriorate needlessly before involuntary commitment and/or court-ordered treatment can be instituted. When the “dangerousness standard” is used, it must be interpreted more broadly than “imminently” and/or “provably” dangerous.”
Pals, this is the type of mindset that pervades NAMI. I see no difference between these proposals and E Fuller Torrey’s.
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CannotSay 2013,
I’m curious about what the blog author might want to say.
Although, as pointed out in a prior post, this is not required or to be expected… I hope Claire will comment.
Duane
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Thanks for posting this, I agree that NAMI has to be held to account for these positions which are contrary to international human rights.
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Sure, which is why I side with those who have said that there cannot be a Kumbaya moment with an organization that actively promotes these abuses.
In Europe, abuses such as these have been repeatedly sanctioned by its European Court of Human Rights. I was at the receiving end of one such policy, in particular that which is articulated in point 9.2.7. Note that I was not dangerous, not even gravely disabled in anyway. It was just the “medical judgement” of a psychiatrist that I might become one that was enough to have me committed in a way in which the judge just rubber stamped the psychiatrist’s decision.
It is no accident that the rate of involuntary so called “treatment” orders in Europe is an order of magnitude higher than here in the US, with Finland being, by far, the worst offender http://bjp.rcpsych.org/content/184/2/163/T3.expansion.html http://bjp.rcpsych.org/content/184/2/163/T1.expansion.html .
So we don’t have to hypothesize about what it might look like if US states were to adopt the policies that NAMI advocates, since that is the reality in the European Union. My American citizenship is the difference between living in freedom without drugs and living under the constant fear that I could be committed unless I agreed to take drugs.
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Here is a list of Drug companies and others who gave money to NAMI.
http://www.nami.org/Template.cfm?Section=Major_Foundation_and_Corporate_Support
Look at 2013 ! “Universal Health Services” A psych hospital franchise gave money to NAMI !
Here is a list of children and others killed by abuse in Universal health services hospitals.
http://www.psychcrime.org/articles/Universal_Health_Services_Profits_Over_Patients.html
NAMI doesn’t care about what there sponsors do, they are simply the marketing department for drug companies and the APA.
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I’m going to try to point something out, and hope it doesn’t cause too much of an explosion. Psychiatric drugs indeed are dangerously addictive, horribly so. But why do these drugs even exist? What is it about civilization that illicits their production and use? And what does this have to do with addiction?. And I think we’re talking about an addiction that’s stronger than anything physical: it’s the habit of judging other people. A group of psychiatrists do that with their diagnosis, and a group of anti-psychiatry people do that with an idea of justice. Both believe they are doing it for the good of the all.
If people who truly look at mental illness do this to gain an understanding of trauma, and this becomes universal to the human condition, this also relates to criminals and what they went through; that is a completely different approach than the justice system, for the most part. This also deals with trauma and addresses it and heals it. And that deals with cause and effect rather than making the effect out to be a cause in itself, which it isn’t. That also becomes an addiction, this involves thought, and is more of a cause than anything physical (drugs, what happens that’s called objective and can be labeled as a diagnosis or a crime).
Is a justice system, a penal system which uses trauma (punishment and it’s threat) to try to control people’s behavior really the appropriate tool to use to try to change the mental health system or is dialogue a better tool? And beyond that, not judging people, which involves thought, which involves that our thoughts never were separate; that they have an energy beyond the physical which doesn’t change as much as we try to make the physical out to be something “objective” in itself, when maybe thought which remains “subjective” is more objective than anything physical. And so not judging a person is felt stronger than any means which would try to control them. Is that maybe a better approach?
A “schizophrenic” instead of having a disease, I see as someone approaching this relationship with thought. Acting out the parameters of fear he/she needs to let go of so that he can think clear, because it’s thought rather than it’s programmed behavior that’s acceptable or isn’t acceptable to the “society” around him wielding fear and justice and all of its controls. And I myself have encountered the same problem amongst some of the “anti-psychiatry” people; that they have a set regiment of controls that cause the same “psychotic” reaction in me until I let go of them, get away from them. That can also cause problems like the mental health system does. I can only hope that Claire Weber actually looks at the results of the Homes in Finland, Open Dialogue, the Earlier asylums the Quakers had, the Soteria project; and all the people that went on to have fruitful lives after being diagnosed with schizophrenia. One can only hope that the approach isn’t that with the worst cases we go back to the medical model, although that has proven to only make things worse. Or that it’s seen as the only method of treatment (although it’s statistically only hampered and complicated recover) and thus is implemented because “something” needs to be done making the people doing “something” feel appeased while it abuses the person actually needing help. And they’re not allowed to say how they feel about it or is judged as being non-compliant. One can only hope that what this truly does isn’t overlooked because she “seeks everyday to make space for all perspectives and experiences that cross her path.”
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Nijinsky, I relate to what you are saying about a “schizophrenic” approaching this relationship with thought. I think it’s a good insight and maybe goes part of the way towards defining what is happening when we get labeled with that label… I have always thought of it as a garbage diagnosis but there are real experiences as well.
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Excuse me, I’m talking from my own experience, also in regards “schizophrenia. So you can say this “maybe” goes part way, but it’s my story and what has healed me. And that in no way is half way. This also in regards personal trauma which wasn’t minor or easy to understand, and how I healed from that. If you have your own story of how you healed, then feel free to relate it.
Further more, Quantum physics itself, which is the result of hard scientific investigation at the most intense level possible regarding the physical Universe, says the same thing about thought and “subjectivity.” We aren’t separate from what we are observing and judging.
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Before this gets off topic. When I was referring to thought in the above post, this was in regards the two sides of a disagreement, both sides believing that the other side is something objectively separate from who they are; and that their judgments of the other side (and anger, attack thoughts, condemnation and the privileges they give themselves to use force) is objective as being separate, and what their thoughts are doesn’t effect what’s going on. How they judge the other party and to what extent they would like to punish the other party (as if trauma induces good behavior) is all seen as being separate from what’s going on. And what they are observing the other party doing is seen as objective, rather than a decision they are making themselves.
From all the trauma I’ve been through, I really haven’t found finding a just cause to traumatize the other party, and call this discipline, something that induces healing. And dialogue in itself goes beyond the physical parameters of it, I believe, and involves what you think. This is beyond time and space, I believe; and it seems that quantum physics also points this out, as have many disciplines before this.
To find peace of mind, I haven’t found this to come from hating and wanting to punish the other party. In fact, I believe that this is investing in what caused the problem to begin with, and only causes more confusion and trauma, and results in more of what you’re trying to stop, to prevent.
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Regarding ” We need to have a place for all voices.”
Voices of the slaves and masters, a discussion between the two?
“A slave is he who is unable to speak his thoughts./This is slavery, not to speak one’s thought.” wrote Euripides.
The psychiatrist excuses the guilty (insanity defense, the brain chemical imbalance did the crime) and punishes the innocent (involuntary commitment, pre-crime , we think you will commit a crime so we are preventing you from acting).
________________________
Who is in power? If you are in power you call it treatment, not torture.
Treatment stops when the psychiatrist wants it to stop, not when the patient wants treatment to stop.
Why should I follow your orders?
I never signed into the Army, your Army.
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Last night on The Learning Channel (TLC) part of Discovery Network, there were two one-hour programs on “Born Schizophrenic.”
It chronicles the life of a five year old child diagnosed with Schizophrenia, her parents and sibling.
I could not watch the entire program. It was just too disturbing to me. I point this out because the Discovery Network is very well known and I’m sure many will have seen or will see this program.
In the context of this discussion, how do we dialogue with the people in this story? The parents, children, physicians, etc.?
This will NOT be an easy thing.
Link to the program:
http://health.discovery.com/tv-shows/psych-week/videos/born-schizophrenic-janis-world.htm
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Jacqui Dillon tackled this subject in her post.
http://www.madinamerica.com/2013/01/the-hearing-voices-movement-in-response-to-a-father-my-daughter-the-schizophrenic/
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Thanks Rossa, I didn’t make the connection with Jacqui’s past post. I’m glad your memory is better than mine!
D
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HI David, they do have a Jani’s Foundation FB page, but if you visit it, I think you’ll find “dialogue” is in very short supply. There is a lot of pain and angry attacks expressed on the site. Very sad situation. As my grandaddy would say, “If I was a praying person, I’d pray on this one!”
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David, maybe this is something you or another of our bloggers could write about? Registering a deconstruction of a show like this into the Google-sphere would be a very interesting experiment. We do pretty good trade in SEO these days and such an article could easily show up right alongside the show itself in search results.
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Thanks for this idea Matt. I should have remembered Jacqui’s blog of some months ago. I re-read her piece and the responses. It generated a pretty lively debate. There may still be some benefit of another piece.
Couldn’t help but read the recent (today) WSJ article on Stimulant drugs and academic performance. I know this one can generate a blog!
WSJ Piece: http://online.wsj.com/article/SB10001424127887323368704578593660384362292.html
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This just seems like a polarising issue i’m afraid. My personal opinion is that it’s probably best to move on from sites like this.
I appreciate what the people on the front lines are doing but it’s just too offensive to me to watch or read this stuff anymore.
The authorities in mental health have their livelyhoods tied to psychiatry. Questioning the model threatens livelyhoods, there’s no nice way around it. It’s depressing no doubt but sooner or later something will have to give, damage is piling up.
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I join with some of the comments here, in particular I would like to hear from the author how she would respond on the question of NAMI’s public policy that is counter to our human rights and equality. And I also feel conflicted because I do think it’s good that Bob Whitaker spoke to them and is building bridges. I agree with the comment that hopes the author (and NAMI) will look into the work being done in Finland, and by Hearing Voices Network, etc., to come to some changes in their policy and advocacy as well as to find solutions in their personal lives.
I’d like to invite the author to look at my blog on Mad in America and to address the issue of psychiatric torture as we are dealing with it from a human rights perspective. It is not pretty to hear that the United Nations Special Rapporteur on Torture has condemned the practice of nonconsensual medication, and that this practice meets the criteria for torture. It is not pretty, and I for one acknowledge that people opting for this abuse are acting in a context where they don’t understand either the seriousness of the harm they are inflicting or how to think differently so as to allow for a different way of responding. I have not yet had any psychiatrist come to me and say that he or she is grappling with the implications of practicing in a way that amounts to torture (or ill-treatment). I have received a lot of sulky, defensive responses that claim my definition of their acts as torture is abusive to psychiatrists. I’d like to invite and challenge NAMI to engage positively with me on the issue of addressing these harms within the human rights framework, including the obligation of governments to repeal all legal provisions that authorize psychiatric incarceration or treatment against the person’s will or without her/his free and informed consent.
See http://www.madinamerica.com/2013/06/we-name-it-torture/ and my other blog posts, also http://www.chrusp.org.
Best wishes,
Tina Minkowitz
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Thank you, Tina!
Duane
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Bob Whitaker goes to NAMI and speaks with inte3grity. He doesn’t change his message or cosy up to his audience; he just communicates with human beings. Apparently a lot of them were quite receptive to what he said.
This isn’t about Kumbaya – it’s about reaching people. Bob is right: most people involved with NAMI care very much about other people. They should be treated with respect, not mane calling.
I get that there are people high up in PhARMA who have adopted the cynical strategy of using NAMI for their own purposes. And probably some in NAMI knowingly go along with the strategy. But I don’t think most NAMI members, or those who listen to NAMI are that different from the rest of us – they are torn up over the suffering they witness and are doing the best they can.
It is self defeating and insulting to those people for us to circle the wagons and not engage in dialogue with them unless they are willing to listen to our unrelenting insults. Let’s see – Circling wagons, congratulating oneself on the correctness of one’s views and insisting on complete capitulation from those who disagree with us – that’s how psychiatry operates. It shouldn’t be how we operate.
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Totally agree Pete. By the way, Bob wouldn’t have made the outstanding progress that he has made if he had engaged in name calling.
AA
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Goal 4: Early Mental Health Screening, Assessment, and Referral to Services Are Common Practice
Early childhood is a critical period for the onset of emotional and behavioral impairments.
In 1997, the latest data available, nearly 120,000 preschoolers under the age of six – or 1 out of 200 – received mental health services. Each year, young children are expelled from preschools and childcare facilities for severely disruptive behaviors and emotional disorders.
Source http://www.nami.org/Template.cfm?Section=New_Freedom_Commission&Template=/ContentManagement/ContentDisplay.cfm&ContentID=28321
TRANSLATION:
GOAL 4 GET KIDS STARTED EARLY ON PSYCHIATRIC DRUGS
“preschools” they said it themselves.
Drug them with nasty sh^t to make them behave in preschool …
Scary group this “NAMI”
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NAMI has a habit of “collaborating” with groups and swallowing them whole.
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I would like to clarify – I think dialogue is good and I’m grateful to Bob for talking with NAMI.
I’m just saying that IMO, it is not time to blindly trust NAMI:
1) NAMI lobbies Capitol Hill and each of the states for more “off-label” prescribing.
2) NAMI promotes the increased use of these drugs in Medicaid, foster care, and juvenile justice systems in each of the states – resulting in the drugging of *very* vulnerable kids.
3) NAMI promotes the building of *more* psychiatric hospitals – not replacing them with safe havens.
4) NAMI has the blessing of Congress, the NIMH, FDA – and is a major player in what Dr. Peter Breggin calls the “psychopharmacological complex.”
In short, NAMI not only supports the status quo, NAMI *is* the status quo.
To further clarify, I think it behooves us to persuade the status quo to move in our direction; not to join the status quo, in hopes we can all begin to get along.
Duane
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If the question is whether we share a common humanity with people who are members of NAMI, the answer is, “Of course we do.”
I didn’t think that was the question.
Duane
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Oops, “psychopharmaceutical complex”
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Hi, Duane,
I think most of us are here because we don’t blindly trust NAMI, or even trust it much at all. We know what NAMI has been doing, thanks to many of us who take every opportunity to point out its obvious conflict of interest with the pharmaceutical industry. The tide is turning, and we need all the support we can get for keeping the spotlight turned on the abuses of the mental health system. I see that happening within NAMI now. Unfortunately, I can no longer see your comment that I am replying to, so, I’ll stop here. (Just to add, however, that it was Saul who was blinded by the light and fell off his horse. He then became Paul.)
Cheers,
Rossa
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Duane,
You make some good points. Let me try to clarify mine a little better.
Perhaps I am too pessimistic but I don’t think the status quo is going away because big pharma is simply too entrenched in our society. However, it is clear by the comments of many people on Early’s blog that they have realized for quite awhile that drugs were not a good alternative. They just didn’t know what viable alternatives were available.
In my opinion, if we keep stressing to people in a civil way that there are non med options with research to back up up, we will naturally dry up NAMI’s supply of customers without even having to worry about them going away.
Finally, if we want to persuade NAMI folks to move in our direction, we have to work on providing what they were getting from various chapters as it wasn’t all just meds. Many of them found it was the support that attracted them to the organization in the first place.
AA
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AA,
Pessimistic?
I wish I could be so pessimistic. You sound much more like an optimist!
Thank you.
It seems that we agree far more often than we disagree, AA. And even when we don’t, I always respect your opinions, and I’m grateful you’re out there – caring so deeply.
Duane
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Thanks Duane, I feel the same way about you.
Oh my god, calling me optimistic? That seems strange:) I am always the one who is going yes but:)
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Finally found your comment, and I see that you got it right in the first place, Saul falling off his horse. I just read it wrong.
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Not to worry, I “read things wrong” myself, Rossa. And as strongly as I come on sometimes, I really do hope the tide turns with NAMI. As always, I appreciate your insights.
Duane
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I apologize for leaving so many comments on this post, but found something I think is worth reading. It is an explanation of how Mobile Crisis Units (MCUs) work.
On online newsletter from the the NAMI, Western Carolina office:
… “If a family member/caregiver is concerned about a loved one, they must attempt to encourage the loved one to accept a call and/or visit from the MCU. If the loved one refuses and the family member/caregiver is concerned, the other option is to call law enforcement and request that a CIT officer visit the person.
So how often does a visit from the MCU end with Involuntary Commitment to treatment? MCU reports that of the 91 cases they worked in the month of November 2012, six ended with Involuntary Commitment, four went to Crisis Stabilization Units, one went to detox, one went to jail and the rest of the people stayed in their community and got connected to other services.”
Full article (page 2):
http://namiwnc.org/wp-content/uploads/2013/03/NAMI-WC-Spring-2013-FINAL.pdf
I find this quite disturbing.
Duane
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