Do NAMI and MHA Suffer From Anosognosia?

Sera Davidow
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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:

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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.

      • 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.

  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.

    • 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.

  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.

  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”

    • 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!

  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?

    • 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.

  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.

    • 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.

      • 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.

          • 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!

  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.

    • 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”….

  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.

  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.

  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.

  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.

  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.

    • 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.

      • 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.

  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.

  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.

  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.

  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.

  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.

    • 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?

    • 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