Do NAMI and MHA Suffer From Anosognosia?

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In the last couple of weeks, I’ve read two articles in which the National Alliance on Mental Illness (NAMI) is described as being the “largest organization representing people living with serious mental illness.”  (Okay, so one of the articles actually said, “largest trade group representing Americans with mental illness,” but same difference, really.)

Since when?

Putting aside (for the moment) my issues with the use of blanket ‘mental illness’ terminology; since exactly when did they become a group that represents people who have been so labeled in any genuine sort of way?  (Please don’t come to NAMI’s defense on this point with mention of ‘In Our Own Voice.’  Please.)

NAMI National’s very own website acknowledges that they found their beginnings as a “small group of families gathered around a kitchen table in 1979.”  Families.  Not people who were themselves struggling or who had been psychiatrically labeled.  Instead, it was their Mothers, brothers, fathers, spouses, daughters, sons and so on.

Surely, the pain, worry, fear, and desperation of so many parents, siblings, partners and children counts for something, but ‘representatives’ of my voice they do not make.  To me, that is akin to white people acting as primary representatives for those of color, or cisgendered individuals having the loudest voice on what transgender people need and want.  That they should take such liberty or be afforded that title by others without question certainly is representative of at least two things:  Public deception (or, perhaps, mass delusion) and a deep-seated, long-standing system of oppression.

Meanwhile, Mental Health America (MHA) did indeed (more or less) grow out of the work of one particular person who had his own personal experience with psychiatric diagnosis and hospitalization:  Clifford Beers.  One has to wonder, however, what Beers would make of their new ‘President and CEO,’ Paul Gionfriddo.

While it’s true that MHA was already sitting deep in the pockets of the pharmaceutical industry right alongside NAMI (see my blog on that topic: Dear NAMI, Apologies. I’ve been unfair.) and their language is typically just about as offensive, they had done fairly well on taking a stand against such oppressive measures as Involuntary Outpatient Commitment (IOC).  Then, in walks Gionfriddo and his ‘Four Stages of Mental Illness’ nonsense, and next thing we know, he’s testifying every chance he can get in favor of the Murphy Bills (HR 2646 and S. 1945), some of the most regressive, force-laden legislation to hit the bureaucratic waves in decades.

Clearly, Gionfriddo is most often operating out of his own pain and loss of his son, Tim, who no longer has consistent contact with him and who reportedly lives on the streets of California.  (In fact, he’s written a book called ‘Losing Tim,’ that he can be found promoting across the country and various conferences and other assorted venues.)  But, how much can one’s personal suffering be allowed to cloud the public airwaves?

In fact, Gionfriddo’s perceptions prove highly distorted as evidenced by the following excerpt from a recent article on the intended changes laid out in the aforementioned Murphy Bills to the federal privacy law known as the Health Insurance Portability and Accountability Act (HIPAA):

Paul Gionfriddo, president and chief executive officer of Mental Health America, told Bloomberg BNA he understands people have concerns over the potential HIPAA changes. But “those concerns are rooted in the reality of 1970” when it was permissible to discriminate against people with mental illnesses or substance abuse disorders. (Weixel Nathaniel. ‘Mental Health, Privacy Advocates at Odds Over Legislation.’ Bloomberg BNA. August 31, 2015.)

Does Gionfriddo really believe that discrimination against people with psychiatric diagnoses is a thing of the past?  I wasn’t even born in 1970, and yet I’ve witnessed, heard about, or been personally subjected to enough examples of discrimination to fill several good-sized libraries.  Here are just a few I’ve witnessed in the last year alone:

  1. The media regularly demonizes or caricaturizes individuals with psychiatric diagnoses, and excludes or minimizes their voice in any serious discussion about policy, the mental health system, or understanding their experiences of emotional or mental distress. For example, while I’m grateful to two reporters (Kimberly Leonard of US News and Nathaniel Weixel of Bloomberg News) for including quotes from me and other dissenters in recent articles about the Murphy Bills, in most instances, the general public isn’t hearing about any dissent at all (let alone any opinions directly from people who’ve been ‘treated’ in the systems that would be most impacted).  This is in spite of the fact opposition is widespread among individuals with psychiatric histories, their allies, and even many mental health providers.
  1. Try this experiment: Look at your local hospital’s website for their general visiting hours.  Then, compare them to the visiting policies for that same hospital’s psychiatric unit.

For instance, here’s what I find at one of the local hospitals in Western Massachusetts:

“There are no set visiting hours, but visitors are asked to respect patients’ needs for a restful atmosphere.  In some cases, in the Critical Care Unit or Childbirth Center, or at the patient’s request, visitation may be limited.”

I then called that same hospital and asked the main operator about their visitor policy.  She confirmed that they have no set visiting hours, and that visitors are encouraged as it often supports people to heal and feel more comfortable.  I then said, “What about the psychiatric unit, then?  I thought there were very strict visiting hours there,” to which she replied flatly, “Well, that’s the psychiatric unit.”  Note:  The hospital doesn’t even seem to acknowledge the existence of the psychiatric unit in its general visitation policy on the website.

  1. Check out this (current) statement on one particular meditation center’s website.

Persons With Serious Mental Disorders

People with serious mental disorders have occasionally come to Vipassana courses with the unrealistic expectation that the technique will cure or alleviate their mental problems. Unstable interpersonal relationships and a history of various treatments can be additional factors which make it difficult for such people to benefit from, or even complete, a ten-day course. Our capacity as a nonprofessional volunteer organization makes it impossible for us to properly care for people with these backgrounds. Although Vipassana meditation is beneficial for most people, it is not a substitute for medical or psychiatric treatment and we do not recommend it for people with serious psychiatric disorders.

           Do I need to say more?

Clearly, these abuses are mild as compared to some of the many much more violent and horrific examples taking place each and every day.  However, in some ways, it’s their very mildness that serves to demonstrate just how integrated and accepted the bias against people with psychiatric diagnoses is at every layer of our culture.

Thus, Gionfriddo’s denial of the existence of present-day discrimination is perplexing, even if I give him the benefit of the doubt and totally ignore the fact that the HIPAA privacy protections were enacted well after the ‘Americans with Disabilities Act’ that prohibits discrimination, thus rendering even his starting point for that statement to be nonsensical.

So, I’m left wondering:  Are NAMI and MHA (who are increasingly looking an awful lot like NAMI, anyway) suffering from anosognosia?  (For anyone unfamiliar with that term, it is essentially defined by the Treatment Advocacy Center and its followers as a part of one’s supposed mental ‘brain disease’ that leads them to lack insight and awareness that they are ‘sick.’)  How have they come to these distorted perceptions and altered realities?

In truth, I don’t really believe these organizations suffer from ‘anosognosia’ primarily because I think the term itself is absurd (except, perhaps, when applied as it was originally intended to stroke victims and others who’ve suffered real, tangible brain damage), but they sure do seem to be lacking in some degree of insight.  They are blinded by many factors that include (but are not limited to) ignorance, pharmaceutical influence and greed, fear and desperation based on personal family crisis, and public pressure to appear to be doing something.  Anything.  Even if it makes no sense at all.

I wish I could say that pure reason is likely to be what rights this topsy-turvy mess, but we’ve already seen ample evidence that that’s not going to happen.  I’m not suggesting that we join these two organizations down a path of absurdity, but somehow, we’re going to have to collect more voices, get even louder, and be even more persistent than we’ve already been.  Somehow, we’re going to have fight harder and infiltrate more.

Until our voices are seen as having equal value and are given equal space, those that do not understand and lack insight into our experiences (whether they possess good intent or not) will continue to be the ones to define our past, present and future in the public eye.

* * * * *

For more on the Murphy Bills:

***

Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.

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105 COMMENTS

  1. NAMI is too far above those who they do a disservice to those they exploit for their own gains. NAMI also refuses to engage in intelligent conversations or to approach any information that doesn’t fit their financial model which is the “medical” model. They are funded by the medical communities as well and they are spineless. They over pay their few employees and have a mass army of volunteers that they exploit after they have ensured their views are understood and relayed.
    I challenged NAMI online by posting information for alternatives to medications and their funding by these companies and they banned me. I also presented alternative research and treatment approaches.
    They are too arrogant and too powerful to do anything more than abuse those they think they are representing.

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      • Sera: Thanks for pointing out what could be called major micro-aggressions. I was incarcerated in two different mental hospitals from March-May in 1989- in the neighboring states of WVa and MD. I found it curious that the two varied considerabley when it came to procedure.’One had a coed unit, the other did not. In the older hospital, the isolation room was off to the side, while in the newer one, it was locatedmore centrally, so as to make the victim the center of attention.- see Foucault and panoctopain (sic). In the newer hospital I was de-loussed. While in the later, my blood pressure was taken seemingly every hour. In Maryland, There was no set date for an assessment of progress and release, but in WVa it was a thirty day evaluation. For an institution which claims to be a branch of medicine, it struck as odd, how different the ground rules were. Fenway Park and Wrigley field have their unique character, but the game of baseball at least follows a tried and true formula.

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        • Chrisreed, Thank you for pointing this out! In fact, I’m always telling providers (hospitals, etc.) that are sometimes only a few *miles* apart that many things they say they NEED to do or that they do BECAUSE of requirements for that type of institution are entirely different than what another place of the exact same type with the exact same type of funding is doing next door… They don’t seem to care. Which is, of course, very frustrating, too… Periodically, I’ve tried to collect the data on various hospital policies to demonstrate this fact, but people tend to be less than forthcoming with that info when asked straightforwardly for it… Oy! Thank you for sharing some of your experience. Sera

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      • Hello Sera:

        I believe that we should distinguish between NAMI (the organization and its leadership) who are Big Pharma’s lap dogs, and individual members who are desperate, looking for answers in the wrong place but who are also potentially educable and persuadable. Not everyone is educable/persuadable, but some will be. They key is that it is not enough to curse darkness (the coercive, drug-based paradigm), but to light some candles…show non-drug alternatives that work.

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        • GetItRight, I agree that there’s a big difference between NAMI and the people who go there for support, and this blog was never meant to disparage people who go there for support… It would not be fair to ask them not to go there, as they often have absolutely no other option and are desperate and have never heard there even *could* be something else out there. -Sera

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          • Sera, I agree with you and do not believe (and was not implying) that you were disparaging the rank and file NAMI members. I would go further…I would engage NAMI members, one at a time, and encourage them not to make NAMI their sole source of information. I have found that when I tell people “here is what is working for us” and recommend books to read, they sit up and take note (and notes). As more people recognize that the drug-based treatment did not deliver what it had promised and became, instead, a path to disability, more people will be receptive to the message that there is something better out there.

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      • The eminent theologian C. S. Lewis (also author of The Screwtape Letters and The Tales of Narnia) wrote:

        Of all tyrannies, a tyranny exercised for the good of its victims may be the most oppressive. It may be better to live under robber barons than under omnipotent moral busybodies. The robber baron’s cruelty may sometimes sleep, his cupidity may at some point be satiated; but those who torment us for our own good will torment us without end, for they do so with the approval of their own conscience.

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  2. Yes, this last part is what I was thinking of the last time you and I had a dialog. I didn’t articulate it quite this well. NAMI and MHA are the organizations that are reaching the people on the ground who have yet to learn all of the politics (and, in fact, may not care about the politics, only about having a better life, which is more than fair). For those who are interested (and I am losing interest rapidly in having the entire course of my life from patient to clinician to activity defined by my diagnoses), this is, I believe, the question of the day.

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    • It is a bit of a rub, isn’t it… To fight some of these things, needing to continue to identify so closely with them, even if saying we disagree? I don’t even know what to say about NAMI and MHA anymore. You’re right… they have the ear of many people who’ve been through the labeling mill because that’s all that appears to be out there for so many… How to make sure they know there are more options without colluding with the likes of MHA and NAMI is a puzzle at times. Thanks for reading, Sharon. 🙂

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      • This is beautifully stated. I have been out of consumer advocacy for about 15 years, researching complimentary alternatives to a diagnosis of bi-polar disorder. Whereas a diagnosis is static, mental health (or mind/body balance) is not.

        I figured out how to balance “symptoms” of bi-polar disorder almost 98% naturally & moved onto anti-aging in my late 30s. At 51, I am mistaken for being in my late 20s or 30s all of the time. In longevity studies/complimentary health, this is a not a tribute to vanity as much as a “mirror-reflection” of maybe my methods are working. On my 50th birthday there was a palpable gasp of, “maybe she knows what she’s talking about” among my friends & colleagues.
        Getting back into this is like a slap in the face.
        When I attempt to document the extremes of my past: living on the street, trauma survivor, RRPs, state hospitals, forced ECT, in an attempt to prove that complimentary treatments *work,* it erases my credibility among those who have not had the same experiences I have had. And among those who *have* had similar experiences as me, I do not want to be pushy or think in all-or -nothing terms of say, raw foods, versus psychiatric drugs (or cooked food vs raw, paleo vs. grains, meat vs.vegan & on & on & on).
        As I want to make my mark in the arts, specifically writing, I am in a self-perpetuating universe of “how do I describe where I’ve been without *others* getting stuck on the unimportant parts?” Erasing myself before I’ve begun!
        My mentor at On Our Own of Maryland once said, “Oh, Paige! bandying about the term ‘consumer’ has been around for decades!”
        As a word person, that began some reflection, & then I realized the problem: I was trying to describe something & negate it at the same time!!! Which goes back to your comment, Sera, “It is a bit of a rub, isn’t it…to fight some of these things, needing to continue to identify so closely with them, even if saying we disagree?”
        I have not thought about *any* of this for a very long time. In the complimentary medicine world, I have been exclusively reading blogs on energy work & raw foods if I am reading about health. This is painful. That is, having to explain myself in such simple to terms to those who (I forgot) do not see me as anything other than a biologically dysfunctional talking organism under a plate glass. Then I found MIA. WOW!

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        • Hi Snowyowl,

          Thanks for taking the time to read and write such a thoughtful response. 🙂 I can appreciate your having stepped away from all of this for so long, and that it must feel quite harsh upon the stepping back in.

          That credibility thing is so hard. I see people grappling with it in so many different ways, from selling out their values for the sake of being taken seriously enough to get a ‘seat at the table’ to being so angry that they reject the idea of tempering anything they ever say and so rarely get heard… How hard this all is makes clear just how oppressive systemic oppression truly can be…

          I hope you find a way to get heard that feels good to you. It sounds like you have a lot to share. 🙂

          -Sera

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    • Sharon:

      The little things are important when reaching out to family members. Smuggle in and leave MindFreedom materials such as ‘Truth Injection Brochures” (they are free for download on MFI’s website) at community hospitals when visiting friends or family members who are involuntarily held. NAMI literature is posted prominently at bulletin boards in the visiting areas at these facilities. If medical directors allow NAMI to post their materials, equal bulletin board space should be given to other consumer organizations.

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  3. Most self-aware people with mental illness labels would not want to be represented by a group as ignorant and damaging as NAMI.

    Some of the biggest things NAMI members are ignorant of are:

    1) Mental illness labels like schizophrenia and bipolar do not represent separable illnesses with common biological or genetic origins.
    2) Severe emotional suffering mislabeled schizophrenia, bipolar, and other such myths can be fully healed given sufficient psychosocial resources. People do not have to “have mental illnesses” for life. How damaging is it to tell your children that they have a lifelong brain disease…

    3) NAMI parents and families are frequently responsible for causing the life problems leading to the “mental illness” labels their children and loved ones “have”. Without the neglect, misunderstanding, inability to love, and/or abuse that many NAMI members tragically and usually unintentionally inflict on their children, far fewer of these children would get labeled schizophrenic or bipolar. Such NAMI parents are causal agents but not to blame, a crucial distinction.

    Thus it’s likely that immature NAMI parents pass on their own legacies of abuse, neglect, and lack of love to their children. The emotional blind spots and naivete of many NAMI parents also make them easy prey to the lies about their children having diagnosable lifelong brain diseases, about medications being effective treatments, and to the myth that parents are not responsible for causing psychotic and severely distressed states.

    Yes, poor parenting is often responsible for leading children to get diagnosed with “schizophrenia” and “bipolar”. That’s why various types of trauma, abuse and neglect correlates so strongly in a dose-response fashion with getting a mental illness label. Bad parents do drive kids crazy.

    I no longer speak anyone associated with NAMI and don’t think it is worth the time to engage with them in most cases. NAMI should be viewed as an infected puppet of the drug companies and people counseled to avoid becoming involved with their poisonous misrepresentations.

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    • Thanks, bpdtransformation! I admittedly do worry about all the people who find themselves in NAMI seats because they’re desperate and don’t know where else to go, but I ultimately agree that it’s a poisonous organization overall! Thanks for reading and writing 🙂 Sera

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  4. It is sad and troubling that so many supposed “mental health” organizations are actually mental illness promoting organizations, including the NIMH and the CMHA. There are also organizations started by parents who after their children’s suicides have decided that their child must have been mentally ill. One organization like this, Ulifeline, has been trying to promote the diagnosis of bipolar illness in college students.
    There is no place in emotional health advocacy for self promoting individuals or organizations that hope to alleviate their own guilt or responsibility by disseminating damaging misinformation. We need to get away from promoting mental illness. I address this issue more on my blog post: “The need to stigmatize the (overuse of) the term “Mental Illness”

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    • Thanks for reading and commenting, Norman! I hate how much this perspective gets sold to everyone, and it feels especially devastating to me on college campuses where people are so likely to be experiencing some sort of turmoil in their lives just based on their stage of life and these groups seem to be hovering and waiting to pounce with a diagnosis and script… I know many of the people in these groups mean well and are simply just another person who got pulled in themselves during a vulnerable time in their lives, but I do hope somehow there’s a way to shift things. I’ll check out your blog! Sera

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    • Dr. Hoffman. Astro turfing is commonplace. Follow the money when you see little organizations sprouting up which target special populations. These organizations allow family members to outlet their grief and guilt, which is no crime, I would want to do the same if my child committed suicide but big pharma is often the driving force behind these pseudo organizations, therefore the wrong message is often being conveyed such as Greater access to psychiatry will reduce suicide which of course, is not supported by the data. In fact the opposite may be true. Follow the money. There is an abundance of seed money available from big Pharma to start up and operate small non-profits. I think our movement needs to create a certification process as small, organic farms did decades ago to distinguish organice produce from big FARM produce at the retails outlets. We need to start nationally certifying consumer organizations and one of the first tests is NO FUNDING FROM BIG PHARMA, period. I see the same astro turfing happening with women with post partum depression. This is a vulnerable group of women but an organization in my community formed to help women in this category brings in awful speakers who are funded by manufacturers of SSRI’s which are not only potentially harmful in utero and during lactation but can lead to rise in suicide. Is there no end to the corruption? God help us out of this mess!

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      • This also goes for industry shills like Quackwatch and such. It is not hard to rent a bunch of doctors who give themselves respectable-sounding names like “Doctors for Responsible Medicine,” and then seek to to discredit every alternative voice. I love your idea of certifying all such organizations.

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  5. Hi Sera,

    I enjoyed reading your post as the NAMI advocacy agenda has such a powerful influence in our society and on our lawmakers.

    Advocacy is a very profitable business and the magic bullets, psychiatric drugs, the astonishing rise of “mental illness” in America and the enduring mistreatment, provides job security for many of the self-appointed representatives of those living with “severe mental illness”.

    Are you familiar with NAMI advocate and author Pete Earley?

    Pete’s post, “Why Won’t You Take Your Medication?”, speaks volumes.

    http://www.peteearley.com/2010/03/12/why-wont-you-take-your-medication/

    “Why won’t you just take your medication? I take pills for my cholesterol every night and its no big deal?…”

    “It often is frustrating for us – parents — to understand why our children will not take anti-psychotic medication or take it only until they get better and then stop. The remedy seems so clear-cut to us, so simple – and watching them experience the mania, depression, and delusions that happen when they become psychotic is heartbreaking and horrific…..So why do persons with mental illnesses refuse to take their medication or stop taking them as soon as they become stable?

    I am asked that question more than any other after I give a speech.

    Let’s skip the obvious reasons –that some anti-psychotic medications can dull a person, make them feel physically lousy, kill their sex drive, cause them to gain weight or send them to bed exhausted even though they are already sleeping for 16 hours a day. Let’s ignore the fact that no one really knows the long term health impact that medication can cause on a person’s body.”

    SKIP THE OBVIOUS REASONS???

    IGNORE THE FACTS???

    Perhaps if Pete’s cholesterol pills made him sleep 16 hours a day and sacrifice having a normal life, he would seek alternative methods of controlling his cholesterol.

    What right does this man, who is careless and inconsiderate of what others go through, have advocating on the behalf of all those considered to be “mentally ill”?

    What are his credentials?

    How much money does he make as an advocate?

    As ignorant as he is, Pete is invited to speak around the world and to our lawmakers on a topic he has no formal education/training in, or personal experience with and had no tolerance for his own son, who at one point he told that he wished he had ““never been born.”

    How can he be fired?

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    • Hey encephalopathycauses-smi (admittedly, I had to cut and paste that to be sure to get it right!),

      Thanks for taking the time to read and write and include some of that post from Pete. (I think of him as a Treatment Advocacy Center mouthpiece more than NAMI, but he’s likely both.) I’m definitely aware of him, but hadn’t seen that particular post… Oy.

      VERY unfortunately, both NAMI and a Massachusetts mental health provider org are bringing him here this month to speak. I’ve tried to challenge the provider org on explaining why and have gotten nothing out of it. It’s very upsetting…

      I’d LOVE to figure out how we can knock him off the speaker’s circuit! If you have ideas, let me know!

      -Sera

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          • Sera: Here is another example of “mental health providers” speaking in our name. Weston State Hospital ( Civil War era construction). closed in circa 1993 in WVa. A private entity bought the building and the grounds and changed the name to the original Tranallegheny Lunatic Asylem.-They conduct tours daily and have a Bedlum Ball on Halloween. This got the hackles up of the profession class who were appalled about “lunatic.” I sort of took it,’as what is in a name. Others have pointed out, what other reputable profession is constantly changing its name-Asylem,’sanatarium,’hospital, mad, lunatic,’crazy, mentally ll.

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          • How about turning it into a hobby – a blog? Link to his interviews etc. and comment on them to debunk his claims? That would be a good resource and a place to point people to when they buy into his propaganda.

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        • Steve, His reputation for being ‘mild’ is part of what (I think) makes him so dangerous! He’s still really awful, but his mild manner makes people think he’s better than more openly abrasive people like E. Fuller Torrey and so he gets a bigger audience… Sera

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          • Yikes, I just read Earley’s post on medication… and then went onto read his post on “chemical imbalances”

            http://www.peteearley.com/2015/01/30/mental-illnesses-caused-chemical-imbalances/

            Relates to another post on MIA, (the book review on the Depression Delusion) – these people…do they have no appreciation of the inherent damage they do to people who’ve been to hell and back (multiple times) and then have the audacity to cast that aside and tell them fairy tales about chemical imbalances….?

            Words fail me.

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          • Anonime, Thanks for reading and commenting… Unfortunately, there’s an endless supply of terrible reading from people like Earley, Jaffe, and so many others!!! Good to be aware of it, but I admit that it’s not so good for me personally to read too much of it… I just end up finding myself stuck in the mire and there’s always more of it to read. Ugh. Sera

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      • I think the most powerful way to silence Pete Earley would be for his son Kevin to vehemently and publicly reject his dad’s pro-force psychiatry campaigning and quit the “treatment plans” that his dad has been “encouraging” him to remain compliant with. The public would be a lot less reluctant to support people’s right to freedom of choice in how they address their extreme states if they could easily access information about the gamut of consequences that ANYONE can face in their lives when they seek out or are pushed into the mainstream and pro-force psychiatric systems. The discomfort that may be evoked in some people when they hear that sinister, but truthful narrative could be eased considerably if we were to conclude it by showing these skeptical and curious people who have opened their minds to our message how healthy, productive, and joyful this freedom of choice can be for the large majority of psychiatric consumers and survivors. Mad in America should reach out to Mad people who are involved in NAMI and MHA as well as Mad people who aren’t involved in either of those groups but who have friends or family members that use these groups’ influence and information to curtail the Mad person’s rights.

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          • Kevin wanted to try alternative therapies but was discouraged by his family.

            Eventually, his brother told him either take your meds, or we don’t want you around our kids.

            Kevin is a peer counselor and advocates for the use of psych meds. Pete employs his other son to manage his websites/blog and his daughter became a mental health professional.

            http://www.peteearley.com/2011/06/01/another-earley-advocates/

            Kevin is an artist and rapper. He uses his music to promote drug treatment for recovery.

            https://www.youtube.com/watch?v=7Bti4Ey2yyE

            “My brother came to me in 2008. He was about to have his first child, making me a first time uncle. He told me that if I wanted to be a part of his child’s life, I would have to take my medicine. I made a promise to him, for the sake of my niece, that I would do such a thing. Nowadays, I take my medicine religiously.”

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          • encephalopathycauses-smi 9/8/15 12:41 pm

            So Pete’s whole family is in on the pro-force psychiatry racket and they threaten to disown Kevin unless he poisons himself on psychiatric narcotics? These people are monsters. They need to be very grateful that even some of the fiercest critics of their pro-force psychiatry campaigning don’t know those things about them. If Kevin dies as a result of chemical toxicity, his family should be charged with 1st degree murder.

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        • “I think the most powerful way to silence Pete Earley would be for his son Kevin to vehemently and publicly reject his dad’s pro-force psychiatry campaigning and quit the “treatment plans” that his dad has been “encouraging” him to remain compliant with. ”

          I hope you do not mean that Earley’s son should just stop his meds cold turkey. Were that to happen, he would likely suffer a severe withdrawal reaction, which would be taken by most psychiatrists, as well as the lay public, as proof that he needed the drugs. It would be a score for NAMI/Lieberman/Torrey and company.

          Everyone deserves a chance to be free of meds, but let’s not forget that withdrawal is difficult, fraught with risk, and should not be undertaken without lots of research, planning, preparation and support. A withdrawal that goes badly is not only a personal setback, it is exploitable by the pro-drug forces.

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        • When “treatment” kills, NAMI parents are in denial.

          “Zac died during his sleep. No cause has yet been reported.”

          http://www.peteearley.com/2015/01/20/zac-pogliano-dies-sleep-mother-son-spoke-frankly-struggles/

          “Shortly after he was released from the Colorado State Mental Hospital at Ft Logan, John became incoherent, crawling on his hands and knees, urinating on the wall in the corner of his room…Last November 16th, John passed away. Cause: Undetermined. What killed him is not measurable.”

          http://www.peteearley.com/2013/04/29/a-father-responds-when-mental-illness-claims-his-son/

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        • J,
          in response to your “Mad in America should reach out to Mad people who are involved in NAMI and MHA as well as Mad people who aren’t involved in either of those groups but who have friends or family members that use these groups’ influence and information to curtail the Mad person’s rights”, comment, ! am a person with lived experience that is on a local NAMI chapter board of directors. I also used to facilitate several of their programs (Peer to Peer, In Our Own Voice, Connection, Provider Education and Ending the Silence).
          I’m all for it if there’s something that can be done to raise actual awareness for NAMI members. I’ve had a lot of fights with my fellow board members about Laura’s Law, Murphy’s Bull, er, Bill, AOT and NAMI’s general lies and misinformation. I’d call talking to NAMI akin to talking to a brick wall, except I’ve met brick walls that are more receptive.
          I’m all for ideas that you or anyone else have.

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      • Hi Sera,

        When I have a bit more time, I will write a better response.

        I have been writing to Pete since I first came across his book at the library in 2008.

        Although I make very respectful comments, both Pete and Congressman Tim Murphy have deleted all of my comments from their Facebook Fan page and have blocked my ability to post comments.

        For Pete, it is sadly a matter of job security, not only for him but many of his family members who also profit from the Medication Management Monopoly.

        One glaring flaw in Pete’s book “Crazy” involves Florida plaintiff Deidra Sanbourne.

        Deidra spent over 20 years warehoused in a state psychiatric facility being “treated” for “mental illness”.

        Pete does not care that her death was more than likely caused by the “treatment” that he advocates for.

        Very sad that he and our lawmakers can turn a blind eye and there are ways that we can get them to listen.

        https://isepp.wordpress.com/2011/09/16/florida-plaintiff-deidra-sanbourne-was-her-death-caused-by-clozipine-induced-bowel-obstruction-readers-of-the-book-crazy-deserve-to-know-about-the-harm-psychiatric-drugs-can-cause/

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    • encephalopathycauses-smi Thanks for voicing what I always felt about that man. He made me feel creepy but I didn’t know he said such horrible and stupid things in public. Yes, I want to know too, how can we get him fired? Imagine having a person with no lived experience lament about someone’s refusal to take medication as if it weren’t so obvious why.

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  6. Thank you, Sera, for your (as usual) insightful and thoughtful article. I just love your title. Anasognosia indeed, lol.

    Just as our movement has protests in front of the American Psychiatric Association and/or the local electroshock “hospital,” I think it would be useful and productive to demonstrate directly against NAMI and/or MHA when they show up somewhere claiming to represent psychiatry’s victims. We can piggyback on whatever media coverage they are getting. Hopefully, this will bring to the public’s attention who they really represent. Perhaps when they show up near where I live. I can try to make this happen. But I think any activist could do this, as our movement generally recognizes what NAMI really is and who and what it represents.

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    • Sounds like a good tactic which could be organized autonomously at different events in lieu of an organized movement. We should not make media coverage a primary goal but certainly there are ways to creatively seize the media spotlight if they’re going to be around anyway.

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      • In addition to NAMI and the MHA, I can remember demonstrating on the drug companies front doorstep. In Philly, 2012, we avoided doing so because so many people there were taking psych drugs. There’s a big GSK building there. I walked around it. If there aren’t too many “survivors” on psych-drugs, maybe doing so would be a good thing to do again at one point or another.

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          • I’m not saying that. We weren’t marching on a pharmaceutical company, we were marching on the APA. I think we could tackle Big Pharma, too, only it would be a much smaller group. I think we need the people willing and able to take on the pharmaceuticals (& NAMI, too). A few small groups could make a whole lot of headway. The C/S/X thing, well, drop the C, and we’re rocking. Its ridiculous that 1 in 4 people are said to have a “mental illness”. Literally ridiculous. If we were really visible at this kind of thing, somebody might take notice. Hey, that’s ridiculous!

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  7. Sera – I was delighted to read your article; it is so timely as I am currently writing about many similar things myself. I have a upcoming post here on Mad in America that touches peripherally on some of your themes, but I write more about them on my own Web site. I just posted a column actually which cites some of the very real empirical evidence – conducted by university-based, social psychologists – about the discrimination those labelled “mentally ill” experience. When you compare how our rights are not given the same credence as the physically disabled, under the ADA, things become even more telling. My recent column stemmed from Alison Parker’s derisive use of the word “crazy,” and his (and others’) constant conflation of violence with mental illness. Your frustration with advocacy organizations is something I very much share, in particular as it relate to one of the disorders I’ve been branded with, an “eating disorder.” Orgs like NEDA etcetera are ostensibly supposed to be working for the benefit of us – but in reality they are funded by the for-profit treatment center and give us no voice whatsoever. I have tried tirelessly to be heard by then and parent organizations (who are particularly narrow-minded in their views, and constantly emphasize the “brain disease” model of mental illness, because they are so terrified of being blamed for their children’s “disorder” – when obviously emphasizing environment does not necessarily implicate parents). I would love to connect with you more; you might be interested in reading some of my writing on my site and my forthcoming post for MIA (which hopefully will go up today). At any rate, thank you again; your post was very insightful, well-put, informative, and ends with a similar call-to-arms that I conclude my latest blog post with. I look forward to reading more of your work.

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    • Thank for taking the time to read and write, Jeanene. Yeah, I haven’t paid too much attention to the ‘eating disorder’ world for a while, but used to spend a lot of time in that land and it doesn’t surprise me at all that your experience is what you describe. I’ll definitely look for your blog. What is your website? -Sera

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      • Sera – my site is http://adisorderedworld.com – I would welcome your feedback. What is mind-boggling to me is that consumer/survivor/peer-support etc groups & movements are totally absent in the ED world. EXCEPT there is one fantastic research-psychiatrist in Australia, Stephen Touyz (who I’ve written about), who is trying to bring recovery-oriented models of care to the ED Tx field… Have you heard of people like Patrick Corrigan, labeling theorist researchers etc (they are cited in the article I posted this weekend on m site). You don ‘t have to only refer to personal/anecdotal examples as evidence of the rampant discrimination/prejudice which exists. There is quite a lot of good research into this… I just find it more useful in countering establishment thinking when I can cite that type of stuff. I have gotten a prominent outlet interested in some of the issues I’ve investigated, largely because (being a former newspaper reporter myself) I write the way they write – but about anti-establishment ideas. I don’t see much change occurring legislatively – but if we can get issues into mainstream media I think there is a greater chance of swaying at least some minds.

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        • There are mannnnnnnnnny issues in the ‘ED’ world, including their capacity to support and even understand transgender people with body and food issues, but that’s a whole ‘nother story.

          I’ll check out your website by the weekend, hopefully sooner 🙂 I’m definitely interested to read more on labeling theory, etc.

          -Sera

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    • Jeanene: I hope you find this helpful. In your comment above, you write about “emphasizing environment”, and how that does NOT mean “blaming the parents”. I agree. But, I think we risk falling into a “blame the environment” trap. I’m a 40+year survivor of the pseudoscience drug racket of psychiatry, and have 25+years sober thanks to A.A. In the 12 Step program of A.A. recovery, they talk about looking at *RELATIONSHIPS*, as the source of our ills. Relationships with ourselves, and relationships with others. I’ve seen much wisdom, understanding, and healing come from the perspective of looking at unhealthy relationships, and by not “blaming”. That also means taking personal responsibility, as much as we are able to. That’s where SUPPORT is so crucial. Thanks for all you do! Now I gotta go check out your website!
      (The local CMHC is sponsoring propaganda sessions touting both MHA/mental health america, and “mental health first aid”, in “support” of “mental health awareness month” I’ve found it interesting to note that there is virtually NO use of the words “psychiatry”, or mention of DRUGS/”medications”….

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  8. Got any organizations for people without “mental illnesses”? Ms. Chronicity, you say…? Oh, yes, I believe met her once, but I had to send her packing. She left, and she took Ms. Mental Illness with her. She has this clinging issue, you know, and I, myself, well, I just couldn’t stand for it. Figured we would do much better miles apart and going our separate ways.

    As for the seriousness of this business, I figured it wasn’t very serious, and if it was business, it was nobody’s business but my own. Some people are very serious about having a “mental illness”. Such people occasionally, or often as the case may be, have a difficult time letting go and laughing at themselves. I have no such difficulty. I also have no “mental illness”. Sorry to dis-ill-usion you, folks, but you know, sometimes it’s good to have a belly laugh. Anyway, sometimes its more important to be silly than serious. There is, in fact, a heck of a lot to be said for silliness. Some of you with “serious mental illness” should try it sometime. Helps a person get a sense of perspective.

    Nope, “serious mental illness” is not one of the eternal verities, nor does it have to be so serious as all that. There’s a lot to be said for frivolous “mental illness” if you ask me. It’s nothing, anyway, ‘an illegal smile’ might not fix. I’m scanning my list of necessities right now, and I notice, much to my amusement, mental health treatment is not among them. As for “anosognosia”, who can even pronounce that word outside of the medical quack profession anyway? What do they say? ‘Ignorance is bliss.’ So it would seem.

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  9. Sera, This was great! I really enjoyed your commentary on the visiting policy. I would love to change that! Having been on several nights in hospital with my children and seen how one is treated versus being on a psych unit – Oh Vey! Even though the Peds floor are secured there are security paraphernalia one is given to allow access 24/7. There is no reason for that not to be the same on the Psych floor. I would love to do a Saul Alinsky thing and have family members protest on mass to be allowed to the a similar act of caregiving on the psych unit. The days are long and boring on Peds floors even with supportive services. I remember the awful, awful boredom and sheer stagnation on the psych unit.It’s really a no brainer.
    NAMI and other folk literally have no idea of other ways of thinking. The hold of the powers that be are so great. How to untie their blindfolds? I don’t think the powers want that to happen! They don’t want them to see the false wizard behind the screen.

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    • Hey Catnight, Thanks! Yeah, in this state, there’s actually laws.. laws!… on the books stating that – regardless of publicized visiting hours – visitors need to be allowed to visit at any reasonable time that does not cause a ‘serious disruption’ and with enough flexibility to meet both the person being visited *AND* the visitors needs… That’s specific to psych units and any program licensed, funded or contracted by the Dept. of Mental HEalth… But those laws are ignored on a DAILY basis… So, clearly, even that is not enough. Sooo frustrating and contrary to anything we know about what actually helps people heal! -Sera

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      • Because psych patients are not considered actual people, so the laws apparently don’t apply. Seems like an excellent point for a mass protest – have a hundred people come by one or two or three at a time to visit patients on the psych ward, bearing copies of the state law, make sure the media is aware of it, and watch what happens!

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  10. From about 1993 to 2000 NAMI California published a magazine – The Journal- from which I learned a lot about recovery. There were many articles from people with lived experiences. It seemed to have the philosophy that Recovery was not only possible, but should be expected. So, my initial feelings about NAMI were quite positive. They need to do a lot to gain back the trust they once had.

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    • mhadvocate, Hmmm. Interesting, I don’t think I’ve ever seen that publication. Are their old copies of it online anywhere? I’d be curious. I’ve never had positive feelings toward them… I think I went from indifferent and unaware to negative… But I do know that some of the chapters out there come from at least a somewhat different place than NAMI national.

      -Sera

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  11. I suspect that Gionfriddo is popular, or appears in newspapers like the Washington Post because he is business friendly. The ACA, which he supports, is a form of subsidization for big insurance companies. Blaming homelessness on mental illness is certainly preferable to blaming economic conditions, Banking and or real estate, for the situation we see in Baltimore.

    Finally, Gionfrddio has a choice of how he interacts, or doesn’t, with his son. Like any other parent, he certainly has the option to throw up his hands and declare “intractable illness” and begin activism for security, hospitalization, or coercive solutions.

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    • Gene, Thanks for taking the time to comment.. Yes, I agree that he serves a lot of people’s messaging needs by taking attention away from the primary issues that are causing homelessness, etc. And yes, it’s his choice to react to his son’s experience however he chooses… But I admittedly find his way of making money and fame off of it and talking about his son’s story without his son’s permission or input pretty distasteful, nevermind that he’s using it as a platform upon which to promote terrible things!

      -Sera

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      • Sera,

        Thank you for your compelling writing and for the opportunity to clear up some misunderstandings you and Gene may have about me. First, Tim did give me permission to tell his story. He’s always been very open that way. Next, people find MHA’s B4Stage4 messaging powerful because it allows people to see mental illnesses the same way they see other chronic diseases and conditions, and offers clearer and more varied pathways to recovery (many of which do not include the use of drugs), and an alternative to the continued over-incarceration of people with mental illnesses. Also, Tim – like many others – is not homeless just because his income is too low, or because of what he did or I did, but because of a pattern of policy choices that led to his mistreatment in school, in work, in housing, and in other settings – so it’s a little more complicated than you wrote. Finally, MHA’s current emphasis on changing the trajectories of children’s lives is consistent with the efforts of our founder, who did not deny the mental health needs of children, but whose organization instead was responsible a hundred years ago for the development of child guidance clinics in America. That said, thank you to Gene for calling me “business friendly.” I’m going to show that to all my old political colleagues in CT, since no one ever called me that before. And thanks for including a link to Losing Tim, because my life in this area – literally – is an open book, available to anyone to read – and, I suppose, judge (much as you did).

        Paul Gionfriddo

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        • Paul,

          Obviously, you would know better than I how much permission Tim has or hasn’t given you. But I can’t help but wonder how much blanket permission could possibly be given by a man with whom you have so little contact and who you yourself claim to be in ‘stage 4.’ And, by the way, haven’t you recently spent a great deal of time testifying in favor of legislation that would potentially deem him to be in a place where he is unable to competently give such consent? Do you suppose he would be in support of your testimony (or how you use his story) in favor of the Murphy Bill were he to realize it would likely have him locked up against his will?

          Maybe you know the answer to that. But, perhaps maybe you aren’t so aware of this even more important point: Many such (grown) ‘children’ are generally offended by the longstanding trend of parents (and other family members) publicly airing their take on their child’s story, even if some sort of cursory permission has been given.

          While – as a mother of two – I understand that a parent’s own story is intertwined with that of their children, incessantly claiming to speak on their behalf has many implications. For example, it paints the parent’s perception as absolute truth, teaches the (often adult) child to be silent, pushes the idea that speaking in place of others is acceptable as a regular practice… etc. etc. etc… and is simply disrespectful.

          Parents need support, yes, but they also need to be taught how to get that support by telling a story that is their own (even if that might include how another family member’s struggles have impacted them).

          Meanwhile, the 4 stages of ‘mental illness’ is offensive. Period. Sorry. You won’t convince me on that, and anyone I’ve ever heard speak about it has done so with a look of pure incredulity that such a concept has even been introduced.

          (I’m sure it won’t shock you to find out that most people ’round these parts aren’t looking for any ‘help’ to have their various forms of struggle reduced to a medicalized bumper sticker equivalent.)

          The idea that these experiences are uniformly just like any other ‘chronic disease or condition’ is also offensive. Did you think that that explanation would help?

          I’m sure you have found people that support the ‘stage 4’ concept. I don’t doubt that. Have you, by chance, heard about the Judge Rotenberg Center? It’s a center where you can send your kids to be behaviorally ‘managed.’ The good news is, they have a generally poor opinion of psychiatric drugs and do not rely on them. The bad news is, their favorite alternative is ‘aversive’ therapy which includes a WONDERFUL array of interventions including painful shock. No, not ECT… more like, “Hey, you yelled, so I’m going to pick up this box with your picture on it, press this here big red button and give you a painful zap.”

          Do you agree with that? Because, apparently torture does seem to work to a certain extent, and JRC has plenty of supporters they bus in whenever people protest their practices. Really, I find that one can identify supporters of just about anything. It may convince the masses, but what does it really mean? In truth, what you appear to have done is attempt to even further push this idea that psychiatric diagnoses are chronic, potentially deadly life sentences. This is not a helpful message.

          A quick point of clarification before I get to my final points: I actually don’t think that I said specifically that Tim’s situation with homelessness was about economics or housing availability, but I think both I and others said that often that is the case. It may not always be so simple, and other times it may not APPEAR so simple… though homelessness can surely bring on extreme states or prevent someone from being able to re-find balance.

          Paul, perhaps what is most important is this: You can call it whatever you want it. You can say that what you’re doing is in line with Clifford Beers’ wishes. Sure. Okay. Maybe he did want people stripped of their rights and having more ‘treatment’ forced on them. What do I know about that? I’m no medium for the dead, as I’m sure you are not either.

          But certainly many even connected to your own organization do NOT agree with what you’re doing. (That is not a guess or an assumption.) Many are horrified that – under your leadership – MHA is now pushing a Murphy Bill laden with Involuntary Outpatient Commitment (or what you might euphemistically call ‘AOT’). And from what I hear, you’re pretty quick to silence that. Why is that?

          Perhaps you can convince yourself that you’re valiantly fighting for the good while pushing the Murphy Bill legislation… Perhaps you can convince yourself that you are fighting for change. What I see is someone who appears to be blindly fighting for increasingly forceful and larger doses of the same old things that have already failed and traumatized many… And denying the daily presence of discrimination, prejudice and abuse along the way.

          No, not the discrimination and prejudice that prevents us from walking around with our psychiatric labels on our t-shirts (as Glenn Close, MHA and NAMI would seem to wish us to do). Not the discrimination and prejudice that prevents us from happily proclaiming our ‘mental illness stage’ and gleefully seeking the ‘treatments’ that kill us more often than truly help.

          I’m speaking about the discrimination and prejudice that leads YOU to somehow be one of the loudest voices speaking for us; that leads a news outlet to post your comment suggesting that people with psychiatric labels no longer so regularly experience discrimination (in any section other than the comics); and that makes it frighteningly likely that you and your colleagues will succeed in further stripping us of our rights and humanity by seeing the Murphy legislation passed.

          THAT sort of blindness is ‘anosognosia,’ if I’ve ever seen it.

          Thanks for taking the time to respond.

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          • And Sera, you’re right that Paul is in effect creating many more “Tim’s” (i.e. chronically mentally ill young people) via his support of forced-treatment and his promotion of the hopelessness-producing lie that schizophrenia is “a chronic illness like any other.” How ironic for a father trying to save others from his son’s fate, only to inadvertently condemn many more young people to that same outcome.

            It can’t be conscious on his part – Paul will probably never realize the true effects what he’s doing on those he considers “mentally ill”. He’ll continue to believe that people like us are misguided extremists, and that categorizing labels like schizophrenia as “chronic illnesses” and promoting forced treatment is the right thing to do.

            Paul, in case you’re reading this and there’s part of your mind that’s open to my viewpoint, here is an example of John Read’s work about the disturbing effects of equating mental illness labels to physical illness –

            http://www.freedom-center.org/pdf/read_prejudice_schizophrenia_biol_stigma.pdf

            And here is further coverage of the issue by the dissident psychiatrist Sami Timimi:

            https://www.youtube.com/watch?v=5caitdQA6HY

            The sad thing is, if Paul did open his eyes and realize that equating mental illness with physical illness is harmful, or that forced treatment were harmful, he would probably be snuffed out and silenced immediately by the powers that be that support his organization.

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          • So I take it that this guy is a NAMI honcho who publicly pushes the criminal Murphy bill? I agree that there’s not much use in arguing with these people, and that we should instead be working to expose them and their agenda, but kudos for the effort.

            Picking up where Sera left off on one thing — shouldn’t we be making serious efforts to establish that calling someone “mentally ill,” or any of its variations, is a form of hate speech?

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          • Hi Sera,

            I’m late to this discussion but I want to say how much I appreciate your comments on parents who publicly talk about their children, whether it’s to do with “mental illness”, a substance use issue, crime or some other unfortunate plight. I see it all the time and always, always the parent’s account is taken at face value – the old adage that there are two sides to every story doesn’t even get a look-in.

            I love your articles and always look out for them.

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        • I read your story here, Paul – http://www.washingtonpost.com/national/health-science/my-son-is-schizophrenic-the-reforms-that-i-worked-for-have-worsened-his-life/2012/10/15/87b74a98-eadd-11e1-b811-09036bcb182b_story.html

          And I’m very sympathetic to what happened to Ted. I came from a family full of “mental illness” and have experienced the worst of the American mental health system, although thank God I now extricated myself from its lethal ministrations.

          My question is, why would any clear-thinking person want to think about psychotic distress as similar to “other chronic diseases” (presumably physical ones) as John quotes? What a horribly discouraging – and outright false – idea to tell one’s loved ones.

          Also, “the like any other illness” idea is tragic, because it is so well intended, yet still causes such damage. Presumably the intent behind telling people that psychotic distress is “like any other illness” is positive, i.e. to help and encourage people you want to feel better.

          The problem is, speaking from my experience and that of dozens of other young “schizophrenic” and “borderline” people I’ve spoken to, this “like any other illness” message doesn’t encourage; rather, it dehumanizes and discourages. It implies that you have a severe brain illness that you are stuck with for life; it kills hope for truly being free from your distress, and it is based on a lie.

          People labeled schizophrenic or bipolar can in fact recover fully and have no or few traces left of their old distress/symptoms, impossible as that may sound under the “chronic illness” model. Psychoses are not by nature chronic, nor evidence of a brain disease. I am speaking from experience, as well as from a lot of research I’ve done OUTSIDE of the false mental illness narrative promoted by the authorities that unfortunately seem to have converted you to their viewpoint, John.

          I recommend you to the books below containing over 30 long case studies of people who recovered completely from delusions, hallucinations, apathy and hopelessness, “symptoms” which had previously led them to be (mis)labeled as schizophrenic, schizoaffective and bipolar. It also tells how they recovered – usually with long-term psychotherapy, no medication, along with the belief that their psychotic symptoms did not represent a brain disease despite what they had been told:

          Rethinking Madness by Paris Williams
          http://www.amazon.com/Rethinking-Madness…/dp/0984986707/

          Treating the Untreatable by Ira Steinman
          http://www.amazon.com/Treating-Untreatable…/dp/1855756099/

          Weathering the Storms by Murray Jackson
          http://www.amazon.com/Weathering-Storms…/dp/B005WH0PZQ/

          If you pick up these books, John, you will be shocked to read about “crazy” people in as bad condition as Ted, or even worse, who after several years of being understood and worked with psychologically, recover fully to work, have relationships, be free from psychotic ditsress, and live essentially normal lives. You will realize that many of your former allies in the mental health system, people who tell you that schizophrenia is a brain disease and that medication is an essential treatment, have tragically misled you and Tim.

          From these cases, one can see that understanding their delusions, hallucinations, and despair as understandable responses to various interpersonal stresses and environmental deprivation, and vulnerability to stress- not as symptoms of a brain disease – was instrumental for recovery.

          This view does seek to blame parents like as “bad parents” – although poor parents certainly can and do cause severe mental distress that gets labeled as schizophrenia, bipolar or personality disorders, as my own parents did because they did not know how to express their love in a healthy way. Rather it takes the empowering view that relationships and the environment can profoundly influence us in both negative and positive ways, much more than biology or genes alone. In this way psychotic “illness” like so-called schizophrenia can be both caused by parents, peers, and the environment – as it usually is – but also fully healed by people in the environment.

          It’s too bad Tim was probably told the lie over and over that his distress represented a mental illness called schizophrenia and he needed medication. Once indoctrinated into the mental illness lie and buried under mind-numbing medication, many of these poor souls like Tim are doomed and never get the chance for redemption.

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          • One reason the idea that “mental illness” is biological increases “stigma” is it makes weird/self-defeating/or nasty behaviors life long sentences. I have always struggled with self pity. On being told “You can’t help yourself; you have a screwed up brain!” I gave up on making my life better and thought drugs were the answer. They weren’t!

            Btw, if Pete Earley’s cholesterol went through the roof as a result of his statins he wouldn’t stay on them I bet! Psych drugs don’t work, dummy! The neuroleptics brought on psychotic episodes and seizures while the SSRI’s made me feel suicidal. That’s why I am coming off these poisons.

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  12. No organization can represent the psychiatrically labeled which is not controlled by same, and in which “survivors” have the tiebreaking vote in every decision. This goes without saying I hope. What disturbs me some is the amount of energy people put into fretting about them when they should be dismissed out of hand as interlopers and exploiters, and shills for the pharmaceutical industry. Then ignored. Arguing with them gives them credibility.

    It should also come as no surprise when the corporate media dismiss and patronize us. That’s their job for god’s sake — to keep people mystified about their oppression on all levels. People should stop thinking that they’re doing something wrong, and that if we just have the right approach and information the media will get it and spread the word. Only when the powers-that-be feel threatened by our success will the media take us seriously, and then only for the purpose of discrediting us in the public eye.

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    • Well, reading Psychiatry Under the Influence is enlightening. The media didn’t always dismiss us. The APA has done a superb PR job of its own. What we are confronted with now, in 2015, are the results of this APA PR job. Guild, or business interests, in other words. That, and the relationship it has established with Big Pharma, aided and abetted by NAMI, the organization fpr families who hate members enough to dump them in the loony bin.

      As the former director of MindFreedom International David Oaks has put it we must become our own media. The corruption is deep. Way deeper than any head. I don’t think there is any other way. We can get a hearing. We can’t get a hearing by maintaining a sinister silence. We can only get that hearing by speaking out. Speak out long and hard enough, and they will no longer be able to ignore us. They only ignore us now because they have their own trained apes speaking. We can change that.

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      • No way am I suggesting silence or not speaking out long and hard. I think where we direct that speech needs to ne more thoroughly considered. We need to make the corporate media irrelevant to our struggle, the occasional article which slips through notwithstanding. And yes, we need to develop our own media and other means of communication, and to use the existing “progressive” media; unfortunately even the latter is often in the hands of totalitarian pro-psychiatry liberal-leftist types, who are probably our biggest obstacle. But they can be overcome in time (maybe when psychiatry is finally used against <them). The corporates on the other hand will do their best to make us appear frivolous no matter what. Psychiatry is one of capitalism’s last lines of defense, so don’t hold your breath for that New York Times expose.

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    • oldhead, I agree with you to a point… And yet, if we don’t fret some and bring it into the public’s eye when we can, I feel like no one even knows they have any opposition whatsoever which also doesn’t feel good. I find it to be a mass public health concern that people don’t realize that there’s any alternative to NAMI, etc. or – more importantly – to the messages they convey about human suffering.

      So, while I agree with you that that’s not the only way we should be operating, and that getting stuck there probably won’t lead to the change we seek, it still feels a relevant part of the approach to me.

      In any case, thank you for reading and commenting!

      -Sera

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  13. NAMI and MHA have not cornered the market on anosognosia. In fact, the mental health system is so replete with well believed misrepresentations that one has to wonder if anosognosia is institutional. Let’s see … all mental health programs without exception are predicated on the Principles of Recovery and the Domains of Wellness, alternatives to medication are readily available, services and supports are offered on demand if one just reaches out, peer programs are always better and more sensitive to the needs of consumers, outcomes are predominantly favorable, mental illnesses are significantly more treatable then many other illnesses, mental illnesses are just like diabetes, every mental illness initiative is successful, each new medication is safer and more effective, training, conferences, webinars, seminars, colloquia, forums and the like are evidence of systemic transformation. It goes on an on. To the extent that those who make the representations believe them certainly evidences the lack of insight that is anosognosia.

    The pity is that so many believe what is glibly represented. The message is hopeful where the reality can be so very grim. My peers and I long into the mental health system are left to suffer the added burden of failing to recover when so much is putatively available to us. We know better and have the insight to appreciate that salesman’s puffery is rarely reality. It still hurts.

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  14. Hi Sera, hope you’re well. (My whole response just disappeared and I’m trying to reconstruct it. Windows 10 sucks. Plus I hear it’s basically spyware on a whole new level.)

    So, apparently my above comment wasn’t the clearest thing I’ve ever written judging from how some people have been responding to it; hopefully I can clarify a bit.

    On the media thing, I didn’t mean we should ignore the media or chase them away; of course we’ll want to keep sending them press releases at appropriate times. But we need to understand their reason for being there and shouldn’t put a lot of effort into trying to convince them of something that, as corporate state spokespeople, they are not interested in understanding beyond the point of learning to use our own words against us From what I understand (anyone with the actual statistics should chime in here) the 5 major media corporations receive the bulk of their advertising revenue from Big Pharma. I am particularly opposed to tailoring our activities and choosing our spokespeople to fit images that the media find acceptable, a road which would inevitably result in us ditching “anti-psychiatry” for a nicer sounding term.

    if we don’t fret some and bring it into the public’s eye when we can, I feel like no one even knows they have any opposition whatsoever

    Absolutely we need to fret, scream and whatever else it takes to bring things into the public eye. The question is how, and my point is that trying to appease the corporate media represents a strategic dead end. I totally support and would participate in efforts to educate (and shame) the left, for example; or taking the struggle directly to “survivors” caught up in groups such as NAMI by leafletting their events w/bullhorns. (Now, exactly what analysis such leaflets or speeches would reflect is a subject in need of organized discussion since there is at present still no unifying “line” which represents the majority of the anti-psychiatry psychiatrized and our allies.) This is how we will reach the grassroots, not by waiting for them to read about us in the Washington Post. Not to say that we might not want to have a proportionally small task force to work on corporate media matters, but this should not be our focus, and we should not view such coverage as a yardstick of either our success or our lack of it.

    Frank brought up the 2012 APA demonstration. An example of what I’m talking about can be found in the coverage of that demo the next day in the Philadelphia Inquirer. Excuse me if I’m wrong, but I’m pretty sure MFI portrayed this article as evidence of the event’s success, when in fact it portrayed us as unfocused, mindlessly ambling around, and unable to carry out simple directions from our minders when it came time to perform our skits. I think it’s time to get over this “any publicity is good publicity” mindset and to start working on ways to control our own message.

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    • Oldhead,

      I don’t disagree with what you say, though I didn’t attend the 2012 APA demonstration and so don’t know much about that part. I do run into the painful lack of investment and interest from mainstream media on a fairly regular basis and the worthiness of our cause doesn’t seem to be what is likely to catch their attention. I’m also not a fan of canning our messages and beliefs in ways that are designed specifically to be ‘palatable’ to these people because far too much gets lost in the process and I swear that many of the people who participate in that exercise get at least partially lost, too. (Although, I will say that I do think there’s SOMETHING to be said for being aware of who your audience is and reflecting that in the parts of your argument you choose in that moment.)

      Perhaps what I struggle with the most are *effective* methods to reach people sucked in by the NAMI message, etc… I see that sort of reaching happen slowly through – for example – things like our Hearing Voices Facilitator trainings… But there are so many more people to be reached by that, and often the initial reactions to these sorts of challenges is fear and anger. It’s also a puzzle how to do a better job organizing ourselves to arrange for some of these efforts… I’m still amazed that even on-line petitions against the Murphy Bill don’t get absolutely huge responses. How to energize hurt, tired, busy, etc. masses in our movement is not a straight forward task.

      Anyway, thank you for your clarifications.

      Sera

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  15. I have yet to read all of your posts on this article; but, I will. However, I would first like to say I challenged the MHA on their stand that “medication” was the foundation for treatment and recovery. I received an email back saying ;” oh we really didn’t mean that, totally, blah, blah, blah…” Second, I realize it is probably prudent to separate those who got to NAMI for help and the NAMI elite/management. What does happen is that the “sufferer” gets hooked into the falsehoods of NAMI; just like they did with the “mental illness tolitarian conspiracy.” Sadly, they, too become horribly brainwashed and now their health and well-being is at risk. Before, the “mental illness tolitarian conspiracy” people did “recover” from their suffering and go on to contribute to the well-being of the world. Perhaps, most of our greatest generals, writers, artists, leaders, scientists, etc. Well, probably, almost everyone. People may be sinful; but, they are not defective or even diseased as the “mental illness tolitarian conspiracy” would led us to believe. Before their “imposition” in our lives; we did just fine despite the “naturally occurring mind altering substances” available such as opiates and alcohol. You see, God built the human being to survive and even thrive– until the “mental illness tolitatianr conspiracy” came into their evil existence. Finally, I fully and completely believe and each day; the sun is shining forth slowly and surely on our cause. WE ARE ON THE RIGHT SIDE OF HISTORY!!!! WE WILL PREVAIL !!!! Never lose hope. Thank you.

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  16. My problem with the most outspoken “advocates” is more complicated. First, mentally ill doesn’t automatically mean stupid. I do not need someone to speak for me. More importantly, I don’t need someone to speak for me only when it serves their purpose or doesn’t rock the boat. Where were these advocates when the news media invented “serious mental illness” and began randomly insinuating mental illness (never specific or any medical history of note) as the cause for acts of senseless violence? Where were the advocates speaking out to have our voices heard? oh yes, drowning those voices out with their own. There seems to be an assumption now that we are unable to speak for ourselves, and no one seems to be correcting that.

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    • Acidpop5, I think many of us are trying to correct that! And it was also one of the early points in this blog. The problem is (or part of it, anyway) when we say that they should not speak for us and we can speak for ourselves, few are listening because they’ve already written us off… and even if they haven’t expressly written us off, it’s they who have more credibility.

      Tonight, I’m going to an event called ‘Hear From the Experts.’ It’s all about suicide and one of the topics they’ll be speaking on is ‘living with suicidal thoughts.’ Incidentally, none of these ‘experts’ are people who themselves have (at least admitted to) suicidal thoughts. They’re all clinicians. I directly challenged the organizer (the medical director of a particular hospital) who honestly didn’t seem to even begin to understand my concerns and ultimately sent me a patronizing e-mail about how she’s ‘sorry this has been so upsetting’ for me. Ugh.

      When your truth *starts* with, ‘of course it’s the people who are NOT ‘sick’ who are the experts,’ it’s hard to even have the conversation for we have such fundamentally different starting points.

      Anyway, thanks for reading and posting. 🙂

      -Sera

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      • So that you can go in with twice the knowledge of any of the clinicians on the subject of living with suicidal thoughts, No one can give you a reason to live and commitment is just delaying the inevitable. You have to start simple apparently. My husband brought home a very sick turtle in the early fall five years ago. I knew nothing about turtles, and the only advice I could get from turtle rescue groups was to put him back outside. His eyes were swollen shut, he had a terrible respiratory infection, his shell was laquered in nail polish, and there were larvae between the scales on his legs. That winter I got out of bed because someone needed to care for the turtle. On the really bad days, I lived because, without me, no one would be there to care for him. It’s ridiculous, I know. Turtles are prone to anxiety, stress, depression, OCD’s, and even suicide, and I felt oddly … connected to the little creature. On the nights when all I thought about was the end of all the chaos in my head, I would let him burrow under my knee on the couch. It was interesting to be, for the first time, the strong one in any type of relationship. I don’t remember when I stopped getting out of bed for Turtlez or when I stopped reminding myself that I couldn’t end it until he was well. He’s been with us for five years now.

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  17. I have so many issues with this article, I am not even sure where to start. As a person who has lived experience with mental health conditions, including hospitalizations, this article is incredibly judgmental and completely contradicts itself. Who are any of you all to judge anybody based on whether that person believes in taking medication, where that person decides is best for him/herself to get support, or to minimize the experiences of family members and those “directly” impacted by mental health conditions (or mental illnesses — and yes, there is a distinction)? Furthermore, where are your facts? These are all unfounded, anecdotal claims — nothing like the evidence-based practices and the data collected which far supports the far-reaching impact of NAMI, MHA, and other mental health organizations have put into place. You see, I KNOW that my voice is valued and heard within NAMI, just as much as anybody else’s who has lived experience, whether it be direct or indirect lived experience. By the way, just because NAMI was originally founded by parents/caregivers of people with mental health conditions does not mean that it cannot expand to also represent the voices and experiences of people who have “direct” lived experience, like myself. Also, I do not know where you all have had contact with NAMI, but “recovery is possible” is a phrase that is CONSTANTLY touted in the groups and events which I’ve attended. NAMI does not push it’s members towards one mental health treatment over another — unlike the people on this article’s Holier Than Thou attitude. I would learn a fact or two, and try not to perpetuate the stigma of mental health conditions as many of you have done if I were you. Although I understand that parents who abuse, neglect, or inflict any sort of trauma on their child could be blamed for their child’s mental health conditions, this logic simply doesn’t hold true in most other cases. I’m still trying to gather my thoughts about this article, but for now I think this is enough. I guess one really can’t take an article written on a site called “Mad in America” but so heartfelt.

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    • JohnnyBoy, I think you misunderstand the intent of the blog. I’ve *always* maintained in all that I write and say that people can and should be supported to make their own choices, and that I don’t find particular value in trying to force people to believe in NOT taking psych drugs.

      The objection I much more typically express (against NAMI, MHA, DBSA, and the system at large) is in regards to the way they convey that there is only one way, and they do it often *with* pharmaceutical dollars. Really, there’s more objections than that, but none of them are about individual people and what choices they make for themselves (beyond wanting them to have full information with which to make those choices).

      Interesting, this claim you make about evidenced-based practices. I wonder what you mean? First of all, most ‘evidence-based practices’ tend to be the ones offered by those who had the money to pay for the research that could manipulate the data in the first place. It’s often a status symbol of sorts. It often doesn’t mean as much as we want it to mean.

      But more importantly, exactly what evidence-based data are you claiming that NAMI, et al are operating with? And what data would you like to see that supports the perspectives I’m offering? I’ve actually found that there’s a (growing) boatload of data that supports what I’ve offered here and in other blogs, but it gets routinely ignored by the general public in so many instances because it doesn’t fit the expectations. Additionally, calling people’s personal stories ‘anecdotal’ as if they’re worth less than other types of research isn’t fair. I often find much more value and truth in people’s real life experiences, and there’s a growing movement toward using and raising up that sort of research with more frequency as well.

      Great that you’ve found support through NAMI, and as with all national groups, you’ll find some people/offerings that are better than others. However, have you looked at their websites? When I say they push one model over another, at least a part of what I’m referring to is their consistent use of ‘mental illness’ terminology and promotion of medicalized ways of understanding people’s experiences. I’ve looked at many NAMI websites and brochures, and that is what I consistently see. Nevermind what I know of their ‘In Our Own Voice’ program and their support of the Murphy Bill… Lots of people used the term ‘recovery’. I actually don’t myself, but when I hear it, I find it tells me very little about what people actually believe is possible in the lives of those who have been diagnosed/hospitalized/etc. So, I wonder what you mean when you say that they are open to all approaches?

      I’m sorry that you’re so upset by this, but many of us are watching people be hurt emotionally and physically and live limited lives and/or die early as a result of not knowing there’s anything else. And we’re being further threatened with worse versions of the same terrible things through the Murphy Bill, which both NAMI and MHA seem to be supporting.

      Anger seems appropriate given all that.

      -Sera

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    • Johnny, what evidence based practices and what data supporting the impact of NAMI etc are you referring to? Can you provide specific references beyond opinion?

      How do you understand the distinction between mental health conditions and mental illness? How is mental illness different in terms of etiology and how does one identify it as distinct from mental health conditions?

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    • While you are correct that some local branches of NAMI can be quite supportive of survivor voice and choice, and while NAMI on a national level appears to be trying to emulate that effort, my direct experience with NAMI programs tells me that recovery almost always means “recovery with medication.” The classes are organized that way, the national promotional material looks that way, and the politics clearly leans that way. Look at NAMI’s support for the Murphy bill, as an example. How can they claim to be pro-survivor voice and choice and advocate eliminating SAMSHA, who has been the biggest cheerleader and funder of efforts to increase survivor participation in decision making and shifting to a recovery focus? How can they support more use of force and a lessening of the civil rights of individuals with “mental illness” and maintain that they are pro-recovery and pro-voice and choice? How can they be anti-stigma and yet allow Murphy and Torrey and their ilk to continue to peddle the disproven concept that mass shootings are caused by “untreated mental illness?”

      NAMI may be mending their ways in some respects, but they’ve done a HUGE amount of damage over the years in promoting the medical model and the medication-first treatment paradigm for decades, and they have a lot to answer for. If you can’t see why folks would be appropriately suspicious of their motives, given both their behavior and their primary funding base, you perhaps need to try to extend the empathy for other points of view that you’re asking for to those who may have had a very, very different experience than you with NAMI and with psychiatric treatment.

      — Steve

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