What I Really Think About NAMI: An Apology and Clarification

Ken Braiterman
51
187

In a previous blog about NAMI NH, I provoked many people in a way I did not intend.

There is no defense for forced treatment and confinement, outpatient commitment, the chemical brain disease theory, or Big Pharma money. NAMI supports all that, and many people are angry at them.  Some people were hurt personally and lastingly by the mental health system, and give NAMI a share of the blame.

I apologize to the people I triggered.  I was hurt by the system too, and some of that is a continuing source of pain in my life.

David Hilton
David Hilton

My mentor in the empowerment movement, David Hilton (click here for Part 1 of 3 of his story), blamed NAMI for all the forced medication and confinement he endured his whole adult life. He was angry all the time, but he was also brilliant.  He did more than any other individual to bring a culture of recovery to New Hampshire’s mental health system.

I embraced his ideas, not his anger.  It had taken me 50 years to get past my anger enough to function well, and I did not want to borrow anyone else’s.

“NAMI-hater,” the term I should not have used in my blog, was actually accurate for David.  When I used it in a blog intended to stop people from bashing one another, I bashed people.  Several readers scolded me for that – rightly so.

It’s tough, and an oxymoron, to criticize people for being too critical.

As Paul Cummings says, “Ask yourself if you have helped one person today, are you building something or showing a better way?  Or just telling people that their way is wrong?”

Like all advocates, I sometimes get emotional, and go beyond the constructive point.  It’s a very fine balance.

I was angered to see my friends hurt.  They worked for free, or paid to work, all their lives to help people as best they could.  They were given the same inaccurate information we were. We are all victims of dishonest storytelling.

A couple of people, in comments on my blog, asked why they don’t change, why the 80-year-olds I called “NAMI Mommies,” the founders of the organization, don’t start writing e-mails saying their story was wrong, and working the system to change it.

First, though it happens occasionally, it’s not in the nature of most 80-year-olds to deny their life’s work, and get active trying to undo it.  They fought their fight with the system, for their own children and all children.  The next fight is up to the children.

I had to stifle a scream when Rona Purdy, a former NAMI NH board chair and national board member, rallied the people at the NAMI NH annual meeting by reminding them of their group’s greatest achievement:  convincing the medical profession, and most of the public, “that these are no-fault diseases, genetic malfunctions of the brain.”

That’s her story after her 30-year struggle with the system, and in her own family, and she’s sticking to it.  I did not scream, or even argue with her, because I honor the pain she went through with great courage, and her lifelong struggle against prejudice.

As I reported in my original blog, I had private conversations with a couple of old NAMI women from that generation about my current activities and beliefs.  I’m closer to these two women personally than Mrs. Purdy, whom I hardly know.

One listened with interest, and the other listened worried that vacations from meds might make her 50-something daughter sick again, like her previous unsupervised med vacations did in the past. Peggy Straw might have heard me when I said a med vacation might be OK for her daughter if she did it the right way, with the right kind of support.

About 10 years ago, NAMI’s national director (he was fired abruptly a few years later) told me NAMI’s future was as an alliance between families and consumers.  But it had to be an evolutionary process because NAMI has an “old guard,” who worry that all the modern talk about trauma “will take us back to the bad old days of blaming families,” he said.

I was in the room in 1977 when my doctor and social worker blamed my parents to their faces for making me sick, and keeping me sick, by telling me I was a writer.  They were undermining my treatment plan, which was to convince me I was a cab driver, not a writer, and there was nothing wrong with driving a cab. To be happy, they said, I had to accept my handicap, and let go of my writer fantasy, which they said was arrogant, manic grandiosity.

Those really were bad old days.  Fortunately, my parents listened to their hearts, and what they knew about me, not to them.

At the 2006 NAMI national convention, the national board chair, Dr. Susan Vogel-Scibilia, a psychiatrist with disclosed bipolar disoorder, told a session that “in 20 years, NAMI would be a full partnership between consumers and families.”  You mean I have to wait till I’m 80 to be a full partner here, I said.

But NAMI National has changed in the last 20 years.  It is more receptive to trauma- and recovery-based services.  I doubt it will ever change fast, or completely, enough to satisfy us.

Affiliates like NAMI NH are ahead of that curve.  Except when they present a united front supporting funding for community-based services in the state Legislature, they are among the change-averse mental health centers’ sharpest critics.

I can’t convince NAMI NH to break that united front, and tell the Legislature to fund less expensive alternative interventions that make people well, instead of keeping them as life-long patients and tax consumers.  They’re afraid to give our Tea Party Legislature an excuse to cut what’s there, replace it with nothing, leaving the people NAMI NH cares about, who need state services at least for now, high and dry.

In 2010, I did not support funding mental health centers as I had for 12 years, and maybe a few people noticed my absence. I might oppose funding next year, if I’m willing to do it alone, and lose all my friends in the state.

The personal cost to me is probably too high for what I’m sure would be a satisfying but futile gesture that might harm innocent people who need services. I only start fights when I think I can win, or advance the cause by losing.

Most likely, I’ll sit out the next state budget process, and advocate for alternatives a different way.

The blog triggered a long list of comments on this website.  Many expressed anger at NAMI, or disagreement with me.  It was all remarkably measured and polite, far more than the NAMI debate on the Alternatives Facebook page that stimulated my blog to a large extent.

When transferred to a Word document, the exchange runs 44 pages so far.  It could be summarized as “NAMI sucks.  No, NAMI’s not so bad. No, if you think NAMI’s not so bad, then you suck.”

We had a couple of exchanges like that on Wellness Wordworks’s “Undiagnosing Emotional Distress” FB page, until we banned them.  People just repeated themselves, insulted each other, and upset other people.  Insults shut down conversation when different elements in our movement need to communicate.  As Jesus said, “I sit down with the tax collectors because they’re the ones who really need the message.”

Only one of the comments on this Mad in American website bothered me:  someone suggested that the old NAMI mothers I mentioned by name in my blog must have traumatized their children.  That’s what his (or her?) ideology says must have happened.

These women are my friends.  Their children might have been traumatized, but I know their mothers didn’t do it.  It upsets me when a total stranger, based on a belief system alone, with no evidence or knowledge, accuses them of child abuse.  David Hilton, based on his ideology alone, accused anyone connected with NAMI of abusing him personally.

I’ve found that all ideologies have inherent limitations, because they are created by people with inherent limitations.  Trying to apply an ideology to everything can lead to terrible mistakes, like the Vietnam and Iraq wars.  I get particularly irked when people deny or ignore evidence that runs against their set beliefs, instead of examining their beliefs.

In polarized situations, I always jump to explain each side to the other, and try to get them to communicate.  I am a Libra, born under the sign of the scales, always seeing all sides and looking for balance.  But the explanation for jumping toward the radical center “is not in my stars, but in [myself],” as Cassius said to Brutus in Shakespeare’s Julius Caesar.

The current political landscape is defined by polarized issues where people can’t talk to people on the other side without hostility, much less with an effort to understand each other, even when they meet at family occasions:  abortion, global warming, etc.

Both sides of these issues have ideologies, and there are some absolutists in each camp. I think absolutism is a personality type, more than a belief.  I think a different way, even when an absolutist and I think the same things.  I don’t agree with anybody about everything.

I don’t necessarily think we in the empowerment movement should spend a lot of time reaching out to NAMI.  But we should not shut down potential allies just because they affiliate with NAMI.  That’s shooting our movement in the foot.

Plaque in the David Hilton Conference Room, NH Bureau of Behavioral Health
Plaque in the David Hilton Conference Room, NH Bureau of Behavioral Health

Activism and outreach require measured anger, judiciously applied.  Some people are too angry or hurt for it.  Others are not angry enough.  David Hilton (click for Part 2 of his story) always wondered if I was angry enough. I didn’t hate the people in NAMI and the system he called “the enemy.”

My adversaries were never my enemies.  It was bad for my health, and bad for the people I was advocating for.

I was just angry enough to be assertive, not aggressive, in dealing with our adversaries, and have cordial personal relations with them outside our meetings and negotiations.  I could (and did) kick it way up when the community’s essential needs, rights, and services were threatened.  People noticed when I got angry because it was unusual for me.

It’s a skill I learned as a young advocate in Washington, before the government turned into a series of armed, hostile camps, trying to destroy one another.

As director of the state Office of Consumer Affairs, and chair of the state consumer advocacy council, David and I were a good team of advocates.  Though he was the one with a job in the bureaucracy, he stayed outside the room feeding me ideas, while I was inside talking to “the enemy,” forming coalitions and translating David’s ideas into achievable proposals.

As for people in pain, who hold NAMI partly or completely responsible, like David Hilton, NAMI is responsible for a lot.  But that anger can damage you.  It helped kill my friend David (click here for Part 3 of his story).

David and I organized the NH consumer empowerment movement into a grassroots lobby that succeeded on two major issues while I was Council chair. We saved our state’s consumer-run peer support centers when the permanent bureaucracy tried to ruin them, and we changed the state guardianship law to give more legal protection to diagnosed parents who came under pressure to give up guardianship of their children.

These things happened because of grassroots consumer activity, not because of us, but it could not have happened without us.

I doubt we could have accomplished those things without support from the Good Straight Solid Respectable Citizens in NAMI NH.  We did not agree about everything, but were very effective when we did agree.   That’s why we should not write off all NAMI people, even if we write off NAMI.

 

 

 

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51 COMMENTS

  1. Ken,

    Re: “Us versus them”

    This term is being mis-used, as I see it.

    There is NOT an “us versus them” as used by conventional psychiatry to take away rights… to deny people basic safety (emotional and otherwise), lock them up, force them to take drugs, etc.

    But there IS an “us versus them” when it comes to people who are being oppressed standing up to the oppression (and the oppressors).

    And there is simply no moral equivalency here.

    It’s NOT okay to force someone to receive “treatment without due process, by insisiting that one group (them) knows what’s best for another group (us).

    But is IS okay for the group being forced to receive the treatment to call themselves US, and to organize to stop the oppression from THEM.

    Are we all human?
    Yes.

    Do we all have basic human rights, to include Constitutional rights?
    Yes.

    So, it would seem there is not, and should not be any “us versus them” mentality….

    Not when force is being used by one group against another.

    Duane

    • Do I hate NAMI?

      The honest answer is Yes, I do.

      Do I hate each and every member of NAMI?
      Absolutely not.

      I don’t know them.
      And I don’t know their hearts.

      IMO, we cannot judge another human being’s heart.
      But we can certainly judge their behavior.
      In fact, we have a moral obligation to do so.

      Anger, rage, hate….
      There’s a time an a place for each of these.

      Yes, including hate.
      Toward a group.

      It’s okay, I believe.
      And it’s better to be honest, and leave no stones unturned about why we hate a particular group.

      Had I been twenty years old in the 1940s, I have no doubt I would have hated Nazi Germany. And I would have been more than glad to rid the Reich from the world….

      I’m not suggesting violence, not in any shape, form or fashion. But I am suggesting that we are in a battle here, in fact a peaceful revolution. One that must be won!

      Duane

      • The first comment was inverted, but I think the readers will understand (hopefully) what I was trying to say.

        Simply put, IMO, there is an “us” versus “them”, due to oppression, and it would be best for “us” to begin to acknowledge the reality, before more souls are slaughtered.

        Duane

      • I believe hate for ideas is what is ‘ok’…Hate for an individual, and for groups of individuals, is what lies at the root of spiritual sickness, bigotry, ignorance and discrimination…It is corrosive and divisive. When I feel hate for ap person, it hurts me, not them. I am human so I do at times feel hate towards individuals, always to my own detriment. I am also a spiritual being, so I do my best to take care of myself and to not wallow in hate, and I feel best when I hate NO ONE.

        That said, I hate the impact that NAMI has had on my Country; and on my family. I hate the fact that NAMI proclaims that it is, “The Nation’s Voice on Mental Illness.” NAMI does not speak for me. Indeed, NAMI does not even acknowledge families like mine exist; much less acknowledge the people who have been disabled and killed by unethical psychiatrists, and victimized under color of law by legislation that it lobbies for. NAMI’s voice on mental illness speaks with a twisted forked tongue.

        That said, it was founding members of the local NAMI affiliate who first offered me support, who validated my rights as a parent, and who encouraged me to fight for my son’s release from the State’s psychiatric facility for children. Their support was invaluable to me; I will forever be grateful for their generosity. It was these same people that I reached out to in the summer of 2010 when my son was Court Ordered to Involuntary Treatment based on perjury and forgery. I called to ask for their advice and support; and I got it. I am indebted to my friend, June, for encouraging me to tell the world what had been done to my son and my family. She did not question, doubt, or judge–More importantly, she did not defend the local mental community mental health clinic, or it’s employees who perpetrated the crimes. She encouraged me to tell the whole story, from beginning to end; saying repeatedly, “Tell it all, from beginning to end, Becky.” She said, “Tell everybody and file every complaint with every authority you can.” She validated me when I needed desperately foe another human being to to say what I knew to be true: “You you have to, for your son’s sake.”

    • The Quakers are known for being conscientious objectors who have a Moral Imperative to, “Speak Truth to Power” (and so does this MadMother when it comes to the malfeasance of ‘psycho’ pharmacology)

      “Those who have the privilege to know, have the duty to act.” Albert Einstein

  2. I looked forward to reading this post, Ken, but the further I read, the more confused I felt. What is it exactly you’re trying to say?

    I have no interest in working with NAMI, nor do I see any reason why I should. I don’t hate them (why waste the energy?), I just don’t agree with what they stand for and what they promote. I would rather put my efforts into working with people who share my values and are interested in creating alternatives to the oppressive system we currently have, which NAMI has certainly played a large role in sustaining and expanding.

    To take your logic to its conclusion, LGBT people should cozy up to homophobes, people of color should reach out to racist groups, and women should try to work with misogynists. Why is it the responsibility of the oppressed to reach out to the oppressor?

  3. I left this in the other comment thread, but I want to repeat:

    “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.”

    I read this apology a few times, and want to say something that might confuse people. The apology is not necessary, and I wish you had not felt the need to do it. Why? because it is imperative to be able to stand up for what you believe in and NOT be sorry for it. Be true to your own convictions. I AM glad to see a “clarification”, because the rant at the title of the previous article did appear to be a response to something that you had read. Finding here you were in fact responding to how you felt after your FaceBook issue, that explains it and probably should have been posted on the FB page not here.

    The mothers DO have to have accountability. Period. I am a mother and I have it. It’s buried in a layer of pain and guilt and no one wants to feel that so it remains buried. “All for the safety of the kids” the mothers no doubt say. Well, that doesn’t cut it. I’m not happy that I walked into a pit of a thing call the mental health system because it is so dysfunctional, so medication based, so entrenched that one cannot get out unless they go underground, they can’t go off of meds even if they are verbal and expressive, the families for the most part in NAMI push that treatment on their kids and they are adults! I’m glad the older mother w a 50 yr old daughter doesn’t want her to become unraveled or “different” but you know what? she can die young on psych meds, suffer lack of quality of life due to side effects and lose her spirit and soul. For who? mom? no thanks!

    I also would like to hear from the grown adult children of these NAMI moms, they surely must be appreciative? do they work in the NAMI business? are they happy? do they have a relationship with their mothers?

    We cannot, create locked birds in cages.

    There ARE ways to be proactive without NAMI. Ken, you honestly admit you cannot handle walking alone, but you look to the group who you say hurt you for support. You aren’t alone, look how many people leave comments on Mad In America. We are not alone, and I have walked alone, and I would rather walk alone rather than take support from a group that is conflicted with my own views, conflicted with blood money income from drug makers who have been fined millions of dollars for illegal marketing of the very drugs the NAMI kids take. Pharma knows a cash source when they see it! this is beyond Big Tabacco!

    I can NEVER imagine taking a penny from a group that takes that money, and it DOES. The illegal marketing of Zyprexa for kids is why it was readily rx’d to my own child because of the marketing my child’s doctor thought it was fine to give to kids off label, unapproved for use at that age back then. That is a CRIME.

    There’s a group called Pharmed Out in D.C. who does CME (continued medical education) WITHOUT pharma income. It IS possible to do!

    Ken, you and Corinna have muliple socia media accounts and blogs, your own space to advocate, there is a PAY PAL button there. Why not collect funds for your police training>? state NO pharma or corporate donations accepted. Period. Take the 100 bucks and go train! without NAMI. It IS possible. You are short changing yourself if you think you are incapable of doing things that are good advocacy work without NAMI. NAMI, I am afraid as made you feel that way, JUST like they make their kids feel, in fact, you are oppressed by NAMI. I would say that to a friend, if the friend was willing to hear open thinking, and by writing here on Mad in AMer you then say, you are open for comments…because here we are, again. It is not a bad thing to have the women at NAMI as your friends! I don’t think anyone is condemning people’s friendships. What I would say to a friend if they were part of NAMI and asked me to participate there? “No thanks.” and I was asked! I was ask to speak. No thanks. I told them they wouldn’t like what I had to say,, it wasn’t their formula being regurgitated, so I said, No thanks. Simple.

    Why is it simple for me? because I don’t mind standing alone when I stand up for what I believe in, I never have and I will always be effective where I place my energy. I have to be true to myself and not go against my own beliefs to advocate, and to ignore where the money from NAMI comes from would be doing just that. That’s just me. No one has to be like me, nor do I have to be like anyone else.

    That’s the freedom we all have! and it is what is stripped of patients when they are rolled into locked psych hospitals involuntarily and given drugs against their will.

    NAMI promotes that medical model, and pharma pays them to do it. Until people REFUSE TO ACCEPT PHARMA’S HAND OUTS nothing will ever change in America for mental health. We are small voices, but:

    “Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.” Margaret Mead

    • stephany,

      You’ve offered Ken some great advice here. Allow me to highlight what I see as the crux of it (the caps are yours, of course):

      “REFUSE TO ACCEPT PHARMA’S HAND OUTS”

      🙂 Yes!

      ____________

      And, by the way, stephany: in a comment you left, in response to Ken’s “ Tuesday Dinner With The NAMI Mommies” post, you asked to know what his police training curriculum entailed; he answered: “I teach exactly what you hope I do at the Police Academy.”

      Well, what does he mean by that, really??? I do wonder.

      After all, police are typically authorized to apprehend and turn over to psychiatry, certain, supposedly “mentally disordered” people, are they not?

      (Does Ken, perhaps, teach the police to allow people to refuse unwanted ‘treatment’ by psychiatry? Frankly, that’s the first thing I’d want him to teach them; but, I imagine he can’t possibly teach them to do that, can he?!)

      …So, I suspect he might be involved in teaching the police such skills, as how to ‘carefully’ convince certain, supposedly “mentally disordered” people that it would be in their own ‘best’ interest to ‘come along quietly’ and be ‘willingly’ “assessed” by a psychiatrist (who may, of course, forcibly “hospitalize” them).

      Such are my speculations based on that non-answer, “I teach exactly what you hope I do at the Police Academy.”

      Would be nice were he to offer some further elaboration on this matter.

  4. To accentuate “birds of a feather” syndrome in business:

    Ark. judge fines Johnson & Johnson more than $1.1B in Risperdal case

    http://www.cbsnews.com/8301-204_162-57412418/ark-judge-fines-johnson-johnson-more-than-$1.1b-in-risperdal-case/

    How many mental health patients are Medicaid patients? think about it. Medicaid fraud hurt them, this drug maker hurt them by committing fraud. How much worse can it get? I have no idea why ANY business would do business with a company like this or others. NAMI chooses to do biz with companies that do crimes, get fined, over the pills their NAMI “kids” et al take. That makes it appear NAMI doesn’t give a *&% about the people, at any cost, sell the agenda!!

    Shame.

  5. Ken,

    You speak eloquently of the limitations of ideological thinking and of the need to cool ones own temper, at times when it’s failing to genuinely forward ones goals. (Unbridled anger does tend to become self-destructive.)

    And, your post concludes,

    “We saved our state’s consumer-run peer support centers when the permanent bureaucracy tried to ruin them, and we changed the state guardianship law to give more legal protection to diagnosed parents who came under pressure to give up guardianship of their children.” You say, at last, “…I doubt we could have accomplished those things without support from the Good Straight Solid Respectable Citizens in NAMI NH. We did not agree about everything, but were very effective when we did agree. That’s why we should not write off all NAMI people, even if we write off NAMI.”

    Honestly, while that second accomplishment you mention is meaningful, in my view (for, it indicates a win for those requiring protection from the state), I am not thrilled by the first-mentioned accomplishment. After all, I appreciate the idea of peer support centers, but I am not convinced it’s good to have them run by the state.

    So, OK, I am genuinely glad you worked to give more legal protection to so-called “diagnosed” parents, who, “came under pressure to give up guardianship of their children.” Really, I am; and, wonderful that you found a way to enlist NAMI support, in that legislative effort.

    Meanwhile, you will recall my comment, on your previous post (“Tuesday Dinner with the NAMI Mommies”).

    https://www.madinamerica.com/2012/06/tuesday-dinner-with-the-nami-mommies/#comment-12220

    I equated NAMI with a hypothetical, pre Civil War organization of slave-holders.

    Those (Caucasian) slave-holders would have ‘justified’ slavery based on the racist proposition that (non-Caucasian) individuals who were captured in Africa, shipped to America and forced into slavery were not created as equals to those who came (willingly) from Europe. (They were viewed as, ‘un-Godly creatures.’)

    I suggested in my comment, you seemed to be supporting the slave holders.

    Now, you write,

    “There is no defense for forced treatment and confinement, outpatient commitment, the chemical brain disease theory, or Big Pharma money. NAMI supports all that…”

    So, now I see you are principally opposed slavery, and you see NAMI supports it.

    However, you also write (about a time, just six years ago), “At the 2006 NAMI national convention, the national board chair, Dr. Susan Vogel-Scibilia, a psychiatrist with disclosed bipolar disorder, told a session that ‘in 20 years, NAMI would be a full partnership between consumers and families.’ You mean I have to wait till I’m 80 to be a full partner here, I said.” (You’ve explained you are not a NAMI supporter; yet, it’s unclear if you’re suggesting that you were a NAMI member in 2006? Maybe you were just a visitor to the convention?)

    You continue, “But NAMI National has changed in the last 20 years. It is more receptive to trauma- and recovery-based services. I doubt it will ever change fast, or completely, enough to satisfy us.”

    When you speak of “us,” are you referring to those of us who oppose psychiatric slavery? Then you are surely right to suggest NAMI will not change fast and will not ever change completely enough to satisfy. (And, truly, that is an understatement.)

    Again, I suggest you should study NAMI’s websites. In particular, Check NAMI.org (online home of the national organization); or, just check the site of your personal favorite (NAMINH.org).

    See how they inform people (or, I should say, “misinform”).

    Ken, emphatically:

    Psychiatry itself is a belief system – a kind of pseudo-scientific caste system – which, everywhere, tends to create locked compounds, within major hospitals. I.e., it is dedicated to making some people (called “patients”) into slaves, by imposing upon them forced ‘medical treatment’ and confinement (and “outpatient commitment”).

    It gets away with this by co-opting the powers of State.

    NAMI is a cult (by every reasoned definition of the word); it is a cult for dysfunctional families, ruled by the ideology of mainstream psychiatry – formed mainly of members who want to keep their families’ identified “patients” enslaved. It is fully backed by Big Pharma, so that slavery is created mainly by impositions of brain-disabling chemicals (euphemistically called “meds”).

    The above-mentioned NAMI “national board chair, Dr. Susan Vogel-Scibilia, a psychiatrist with disclosed bipolar disorder” is a fully indoctrinated cult member and leader.

    Because she believes in the so-called “diagnosis” of “bipolar disorder” that’s she proudly wears, we can be all but perfectly certain that she is a strong believer that some people ‘need meds’ whether want ‘meds’ or not.

    I imagine she probably thinks (as do many psychiatrists) that there will be a medical cure for so-called “bipolar disorder” some day.

    I presume that is why she could only do so well as to speak of some, theoretically, far-off time (decades hence) when all members would be equals.

    That you, meanwhile, continue to harp on how NAMI has, “changed in the last 20 years,” because some few chapters are somewhat more open to the “trauma-informed model” of so-called “mental illness” is not particularly encouraging; it tells me that you really don’t get it; you allowing yourself to be duped.

    Again, I implore you: Just look at the websites.

    And, as you do that, I would ask you to recall how Malcolm X spoke of “house negroes.” Wikipedia explains, “He characterizes the house Negro as having a better life than the field Negro, and thus unwilling to leave the plantation, and potentially more likely to support existing power structures that favor whites over blacks.”

    From that point of view, please realize:

    NAMI is a cult of slave-holders, and ‘peer support services’ which are a function of the State are going to improve conditions for some psychiatric slaves, but they will never lead “patients” to reject psychiatric slavery.

    Finally (and emphatically): anyone who expects NAMI to participate in the abolition of psychiatric slavery is simply kidding himself or herself. From all you say, I think you well realize that. What you may not realize is that softening ones stance, in the fight to end slavery, to improve the conditions of psychiatry’s “house” slaves, is purely cowardice.

    So, please, no more apologetics.

  6. Ken said: “There is no defense for forced treatment and confinement, outpatient commitment, the chemical brain disease theory, or Big Pharma money. NAMI supports all that”

    This, means, that when you work for NAMI as their representative (paid to teach the police)you are not only misrepresenting yourself (which means a lot) you are misrepresenting the organization of NAMI as well. This is a conflict, a conflict of interest.

    I’m not sure you realize that when someone represents an entity by using funds and their name, they represent that entities agenda, or and policies.

    What would happen if you became unraveled and needed help, fell apart in front of them? do you want that kind of help? after all of the efforts to remove meds on your part? would you will be willing to accept their treatment?

  7. Jonah:I left a comment w a different link to an abstract–but then found this about CIT training for police:

    http ://www.nami.org/template.cfm?section=cit2

    “NAMI CIT Technical Assistance Resource Center. Our mission is to supply mental health care, law enforcement, advocacy workers and consumers with the latest information about Crisis Intervention Team (CIT) programs.”

    http ://www.nami.org/Template.cfm?Section=CIT2&template=/ContentManagement/ContentDisplay.cfm&ContentID=129024

  8. Considering this topic is about NAMI and next week the big 2012 conference is being held I thought I’d leave a little snippet from the program I found online:Workshop on Sat June 30 (by the way attending the NAMI national conference is not free)This workshop it touting the use of AOT (out patient court ordered medication compliance “treatment”)and the session is moderated by a representative from Fuller Torrey’s TAC (treatment and advocacy center)I think this represents the reason why I do not support NAMI pretty clearly. They call that approach “civil”.

    STOPPING THE REVOLVING DOOR: A CIVIL APPROACH TO TREATING SEVERE MENTAL ILLNESS

    Grand Ballroom A The groundbreaking video, Stopping the Revolving Door, reveals the inner working of assisted outpatient treatment. It shows, for the first time, the actual court process and shares the stories and perspectives of
    people living with mental illness, their families and judges. The panelists will be on hand to address questions
    and to clarify the nuts and bolts of the AOT (assisted outpatient treatment) process. This workshop will:
    • educate individuals on anosognosia (the lack of awareness of an illness);
    • show assisted treatment laws being used in courtrooms and implemented to save individual lives and
    families; and
    • describe the need for and the role of assisted treatment in recovery.
    ” James Cayce, King County Superior Court Justice, Washington Superior Court, King County, Wash.
    ” Frederick J. Frese, Ph.D., Northeast Ohio Medical University, Rootstown, Ohio
    ” Michael Heggarty, Behavioral Health Department, Health and Human Services Agency, Nevada County,
    Calif.
    ” Moderator: Doris Fuller, Treatment Advocacy Center, Arlington Va.

    http ://www.nami.org/ContentManagement/ContentDisplay.cfm?ContentFileID=165884

    • Thanks for this Stephany. As you may know we’re right in the middle of fighting a bill that would allow an expansion of involuntary outpatient commitment (IOC) in Ohio. NAMI Ohio is pushing hard for this and peers and professionals are pushing back. We suspected that the push was part of a larger national strategy designed by NAMI National and TAC. Your comments lend support to that idea. The phrase “anosognosia” is being promoted in Ohio but comes from TAC and NAMI National. They are trying to use this misplaced term to give “medical cover” to forcible treatment. “If people could only understand how sick they are, they would agree with us.” Scary stuff. When I asked the NAMI Ohio exec recently about how IOC squares with Recovery Principles he said, “recovery principles don’t apply when someone is this sick.” Dr.Frese is an Ohioan who seems hopelessly tied to NAMI’s devices. There’s nothing “civil” about stripping persons of their civil liberties.

  9. Ken, I have nothing positive to say about NAMI. Young people who are sucked into the NAMI corner of the web are all but doomed. Thank the universe for alternative voices that some of these young people will be able to save their own lives.

    But I have read your blog, and your story, and I can only encourage you to keep along the increasingly impressive path you’ve been on in the last couple of years. Well done Ken.

  10. Ken B.: I guess I’ll weigh in. In the 80’s when NAMIDE’s roots were fledgling and leaves starting to show, Mom became a second generation charter member at my urging. We were searching for understanding and coping. The cornerstone of the organization at that time with tremendous effort and lobbying were able to build a human base in the form of a heavy stock of real estate. Housing. The one need in the pyramid to building a better life. We were proud. We were grateful.

    Now 30+ years later a major shake-up, false stories, laid off people, cut in programs, closure of satellite offices. And the public do not deserve an explanation? The legality outcomes written for the public? This stinks! This is a lost faith situation. Where is the Hope — only for those still working at NAMI? Try try as you will, to bring in the truth, the hope, resiliency and courage to face the nation and get things out for damage control already done with a AP Press Release. And put salve on our wounds. -##-

  11. Dear Ken, I was really touched by your stories (including your work with David Hilton). Those stories honor your journalistic skills, by the quality of the information, the writing, and the values they convey.

    You clearly don’t fall in the trap of confusing non-ideological writing with value-neutral writing.

    You always strive to defend the dignity of every human being, including your adversaries. In that respect (and many others) you should be a role model for all of us. At least you are one for me.

  12. ________________

    “I teach CIT. De-escalating a person in crisis is better than shooting or arresting him.”

    ________________

    Ken,

    Whatever you’re doing to keep police from seriously injuring people is, of course, commendable.

    (Surely, no reasonable person would say otherwise.)

    Therefore, it’s my view, that: “De-escalating a person in crisis” is, of course, good – but, only insofar as there is a complete strategy of harm-reduction.

    Bearing this ‘complete…harm-reduction’ caveat in mind, respectfully, I’ll tell you, it’s my firm opinion, that: anyone being apprehended by law enforcement officers, should be given the option of a *non-medicalized* confinement.

    From what you’re saying, it seems the CIT police training you offer is designed to lend no such option. (If I’m correct in reading your words that way, it doesn’t surprise me – as the training you offer is paid for, by NAMI.)

    Ken, according to the U.S. Constitution, every U.S. citizen has the right to be treated lawfully – in accord with the Constitution itself; yet, arguably, when law enforcement officers forcibly transfer people into the hands of medical-coercive psychiatry, they are disobeying the Constitution; I’m not sure if you are aware of this.

    In our country, according to the U.S. Constitution’s Bill of Rights, government must not impose cruel and unusual punishment (yet, forced psychiatric “care” often amounts, literally, to torture); and, those who are to be accused of behaving unlawfully must be given a fair trial, which affords them due process of law (but, most often, there is not even the least semblance of due process of law, which initiates medical-coercive psychiatric “care”); and, as psychiatric “care” may wind up, whether one likes it or not, an ongoing imposition, it can reasonably be viewed as tantamount to slavery. (The 13th Amendment to the United States Constitution strictly forbids slavery, of course.)

    Peace Officers may, theoretically, be “De-escalating a person in crisis” by automatically refusing to arrest him or her (because s/he is supposedly “mentally ill” or “mentally disordered”); yet, by taking him or her, instead, to practitioners of medical-coercive psychiatry, they are, thus, creating a completely false peace.

    To be momentarily, verbally calm someone, only to more or less coercively medicalize him/her, isn’t harm reduction. (In the eyes of the general public – and, in the eyes of the police – it may appear to be that; but, it’s not that, in the long run.)

    Putting a person who is “in crisis” into the hands of psychiatry, is usually a way to ensure that the individual shall be more or less *quietly* tortured – by an imposition of aversive, toxic pharmaceutical chemicals.

    On the other hand, interestingly: most who are “in crisis” can be calmed by genuinely non-threatening talk – and/or by careful listening.

    Ken, as you are a long-time proponent of “trauma-informed” care, surely you are aware: most people who have experienced forced psychiatric medicalization, have been traumatized by it; indeed, clearly, your mentor, of whom you speak so highly, was traumatized by it; so, you well understand: to be “in crisis” and sense further such ‘treatment’ may be coming, will naturally lead one to become more agitated; so, in many (or, most) instances, the proposition of of “involuntary” psychiatric medicalization amounts to anything but harm reduction.

    Now, I’ve said, above, parenthetically, that it doesn’t surprise me that the CIT training you offer is apparently opposed to arrests. For, the CIT training you offer is actually funded primarily by Big Pharma (75% of NAMI’s budget is underwritten by pharmaceutical company donations); and, Big Pharma profits immensely by forwarding this view, that, people who are supposedly “mentally ill” should never be arrested, and *supposedly* the unlawful behaviors of “mentally ill” people should not be criminalized.

    (For example, under the title, “Criminalization Facts,” we find this following passage, at NAMI.org:“This fact sheet provides the basic information you will need to argue persuasively that criminalization of people with mental illnesses is costly for communities, a burden on police and corrections, and tragic for people with mental illnesses. It features sections on the high incidence of criminal justice involvement; the burden on corrections and police; and strategies that work to get people effective community services that prevent incarceration.”)

    NAMI feeds the flames of an abject fear, of “criminalization” and “incarceration,” of the families of those who are deemed, by psychiatrists, “people with mental illnesses”; yes, that fear may come from some family’s intentions to spare their loved ones the shame and/or the potential dangers of being arrested, while in an arguably ‘highly confused’ state of mind; but, in my view (and, in the view of many who have, likewise, experienced psychiatric incarceration and its usual psychiatric ‘medical treatment’), that fear is largely nonsensical.

    After all, whereas, on the one hand, criminalization comes by way of due process of law, on the other hand, forced psychiatric medicalization (e.g., for those who are, as you say, “in crisis”) provides no such guarantees, so it is, that: typically, one shall be exposed to countless indignities as an “involuntary patient” and will find virtually no defense against injustices far more severe than whatever might likely be endure in comparable jail time.

    Of course, given an option between arrest and psychiatric medicalization, many opt for the latter; but, I think it is mainly in ignorance that they do so.

    And, in any case, if one has even the least basic respect for both personal responsibility and for the U.S. Constitution’s Bill of Rights, and s/he wishes to forward a practical policy, geared toward harm-reduction, it seems to me s/he’d hope, that whoever might come to be apprehended by the police shall be allowed to surrender to an *arrest* (as opposed to an automatic medicalization) if s/he so chooses.

    Would you not agree?

      • Stephany, yes, I read your story. You’d reported your daughter lost. (“…She had done nothing wrong and the cop was screaming she was going to take her to a ER for psych eval.”)

        Here you’ve added, “…the cop was trained to capture (find) and send to ER for psych eval.”

        I presume you’re right about that cop’s reaction having been a part of her training. She was just attempting to follow some standard script – (as in the kind that comes from NAMI’s Crisis Intervention Team training) – which leads cops to automatically take one who’s apparently not behaving ‘normally’ to an emergency room, to be “assessed” by a psychiatrist. (Sadly, that procedure is thought to be in such a person’s best interest and/or in society’s best interest.)

        Quite honestly, even were my child developmentally disabled, if s/he had to be picked up and detained by the police, I’d much prefer them to make an arrest. After all, in my view, the ways of ER psychiatrists are – generally speaking – infinitely more hazardous than the ways of the vast majority of most folk whom one might likely encounter in a police holding cell.

  13. Re: Crime

    Emotional distress is NOT a crime.
    Neither is severe emotional distress.

    I can understand that the police need to be able to protect themselves, but the vast majority of people experiencing severe emotional distress are NOT dangerous.

    Police handle dangerous situations day in/out.
    And I have a lot of respect for what they do.

    But I have NO respect for NAMI, or any other group that seeks to “train” the police to treat people with “severe mental illness” (whatever the hell that means), as criminals at the scene, in front of a mental court judge (kangaroo court), and while hospitalized (incarcerated).

    Surely, we can do better than this.
    Surely, NAMI is not going to continue to be allowed to circumvent the Constitution in this country, while scaring the crap outta emotionally vulnerable children!

    … Can you understand Ken, why some of us “hate” NAMI?
    And hate is probably not a strong enough word when it comes to terrorizing children and youth, and spitting on the Constitution of the United States!

    I say, “Enough of this crap!”

    Duane

    Duane

  14. I need to clarify my stance on NAMI re: pharma funding. NAMI is the topic here, thus my comments re NAMI; but this goes for ANY mental health agency. I do not tolerate or condone any conflict of interest across the board–which means Mental Health America, (not to single them out either, just as another example)DBSA, CABF, any org that claims to be in support of mental health initiatives or support that also take/receive funding from pharmaceutical companies are not ones I will promote or affiliate with. Yes, I am willing to stand alone rather than ever have a conflict of interest like that.

    Mental Health America, 2007 Annual Report for example:

    (You know, the one that uses the “bell” of freedom as a logo? shackles be gone? )

    Pharma funding:

    $1,000,000 and Above

    Bristol-Myers Squibb Company
    Eli Lilly and Company
    Wyeth Pharmaceuticals

    $500,000 to $999,999

    Janssen Pharmaceutica, Inc.
    The John D. and Catherine T. MacArthur Foundation
    Pfizer Inc.
    $100,000 to $499,999

    AstraZeneca

    Simon P. Blustone Charitable Remainder Annuity Trust
    Evelyn & Walter Haas, Jr. Fund
    Forest Pharmaceuticals, Inc.
    U.S. Department of Health and Human Services
    Angelina Vecchiolla Trust
    Leonard Vecchiolla Trust

    $50,000 to $99,999

    American Institute of Research
    Estate of John Elling
    GlaxoSmithKline, P.L.C.
    Pharmaceutical Research and Manufacturers of America

    So, we have makers of Abilify, Zyprexa, Prozac, Paxil et al funding yet another mental health agency–when will we stop tolerating this massive conflict of interest? when WILL consumers and their families walk away from this pharma-funded, all for profit, medication based “treatment” paradigm?

    When? It is not rocket science to understand why I am against conflict of interest; this goes for doctors who are psychiatrists who do this for a living and take pharma money (think Daniel Carlat who admitted to “selling” Effexor to other docs by speaking abt it and being paid by Wyeth–another $1million dollar sponsor of Mental Health America!

    These “support” agencies have power and it’s the power to promote a message I won’t support. Pills are NOT the only answer, and remember, pharma sees a profit opp when they see one! Cash cow!!

    Yes, this is important, and if no one else understands this stance, so be it.

  15. NAMI California at least shows some transparency on their site:

    http://archive.constantcontact.com/fs078/1102998498368/archive/1109448498165.html

    It’s on the side bar, thanking the list of pharma companies for their $$$$$$$$$

    NAMI National Recognizes NAMI California as one of the 2012 Outstanding State Organizations

    NAMI CA will be recognized at the NAMI national convention June 30, 2012.

    The medication based treatment model for care will never leave with this kind of “support”–thank NAMI for that! Good luck finding that “individual med cocktail” that never works for a reason!

  16. I don’t personally hate NAMI but it’s ideas make me unable to trust it. I feel like they like to medicalize often. They also are very pick and choose about what to support. I can use celebrities as examples, Amanda Bynes and Britney Spears. Both of them were psychotic, under psychiatric hold and have indefinite conservatorship from people that deep down they probably have issues that they made money as children for them. NAMI and the public are thrilled and I needed to have my money for periods but ended up with it back. My understanding is that they basically have no rights over their affairs either and they both are back to good health again and look spiritually dead and I know the feeling of some of that, the 72 hour holds for yelling to yell over them talking over me and being childish and telling them to **** off and I still think that there should be a few people to evaluate the need for that now because I can be manic and no real danger but loud and I know when I am manic, my arrogance and attitude, even with my state of mind can make a lot of people who I dealt with angry. And naturally, if I am not a danger, I will not be happy about going somewhere that I will just wind up patients that are tempestuous in the ward just as a response to not being heard out when it is not clear if it is needed. They don’t seem to focus on empowering issues like that and there is an overall attitude among other mentally ill folks that psychosis is something that isn’t in their focus.