Mental Health Writings: NAMI’s Attitude toward Mental Health Consumers such as Me Is—Decidedly Unfriendly!

 I used to call my mental health writings “The NAMI Papers,” but as I no longer consider myself part of NAMI, even though formally I’m a dues-paid member until the end of November 2023, which I explained in detail in the post just below this that detailed Indiana NAMI’s egregious malfeasance toward me, I now call my mental health writings simply “Mental Health Writings.”

 

Simply and directly, I am fed up to my Fish (my last name) fishy gills with NAMI at all levels, national, Indiana, and Indianapolis.  Indiana NAMI’s actions against me on June 6, 2023 (of which I wrote on my last blog, September 19, 2023), was the absolute last straw.  I won’t dwell on the details of what happened then, as you, the readers, can easily read them for yourselves, but I had finally had it with the insensitivity and malfeasance of NAMI at all levels toward me:  from the condescending e-mail sent me by one David Binet of national NAMI (who hoped for me to “heal” after he’d rejected my complaint in its entirety by simply referring to the Executive Directors of both Indianapolis and Indiana NAMI as “professionals,” implying they could do no wrong); the slight and refusal to get back to me as promised by the former Indianapolis Executive Director, with whom, before Covid, I had met cordially once a week, and, because of this, felt validated as a mental health consumer; Indiana NAMI’s Executive Director refusing to respond to any of my e-mails sent her prior to June 6, 2023, but in response to that one only, accused me of “harassment” to the Indiana NAMI Board of Directors, which then reprimanded me, barred me from NAMI activities even though I was a fully dues-paid member, and same as Mr. Binet, said to me that because it and the persons I had contacted in NAMI disagreed with my complaints, that mere statement of disagreement meant ”they consider the matters closed,” to quote directly from Indiana NAMI’s Board of Directors June 6 letter!  (No matter whether or not I considered the matter closed; I was irrelevant.)  Only one person in the whole of NAMI, at any and all levels, has been at all kind and considerate to me:  Dr. Kenneth (Ken) Duckworth, national NAMI’s Chief Psychiatrist, with whom I’ve shared several pleasant e-mail correspondences.

 

But all this horribleness from 2019-2023 was not the first time NAMI had shafted me.  All the way back in 2005, it did a number on me too.  Back then my application for SSDI benefits I was entitled to wasn’t going through, and though I asked about this repeatedly with my Gallahue CMHC case manager in Indianapolis about this, all he’d reply was, “It’s not going through,” though each time I asked me to tell me what he was doing , he refused to do so, which was causing me great anxiety.  (Needless to say, although I was working, a regularly but strictly seasonal job that left me unemployed much of the year, I needed that SSDI badly.)  I complained about this to Indiana NAMI and Indiana NAMI responded by—barring me from further contacting it on this!  However, the anxiety I suffered caused me to be “liberated” from my job, and so I went over to the case manager’s office and asked him pointedly to show me just what he was doing that was holding up my application.  I found out, ruefully:  he was entering as the address of Gallahue CMHC only “Gallahue Mental Health,” an obviously incomplete address that the computer, being the big idiot that it is, was rejecting.  Needless to say, I was appalled, and rightfully so!  So I entered the complete full address, “ Gallahue Community Mental Health Center,” and voila! the application went through, while my case manager stood there dumbfounded as an ape.  Within twenty-four hours all the necessary paperwork was completed, after being incredibly, stupidly, held up for four months!  That was June 2005.  In August, I received all my SSDI, current payments as well as back payments.  I gave my case manager, whose last name was Bell, and whose intelligence clearly was not ringing clear as a bell, the invidious moniker “Dull Thud,” and even wrote a satirical song about him and this incident, “He’s Just A Dull Thud.”  I also volubly complained about this all to both my case manager and my Gallahue psychotherapist, both of whom responded by—refusing all contact with me whatsoever for a year, not resuming contact with me at all until August 2006!  (However, later on my therapist became quite helpful with my other complaints against Gallahue.)

 

Although mental health consumers such as myself should be the raison d’etre of NAMI’s existence—after all, it’s official full name is the National Alliance on Mental Illness—sadly, not only are we not, but the above experiences that other mental health consumers and I have had with NAMI only show that we are essentially held in contempt.  Although we who suffer mental illness are urged to overcome the “stigma” associated with psychiatric treatment and get psychiatric treatment ourselves, we are considered by NAMI to be far less important than “caregivers,” i.e., those families and their members who care for mentally ill persons as adult dependents—which is both classist (only the rich can afford to care, perhaps for a lifetime, an adult dependent who does not work, or works only part-time) and counterproductive to actual mental health recovery.  As I found out ruefully when, suffering from my devastating disorders of borderline personality disorder and acute depression I lived far too long under the same roof as my abusive, blaming parents, my recovery made vast strides when I lived independently of them, and had to function as a self-sustaining adult.  (By the way, neither of my parents would’ve been caught dead at a NAMI meeting or contacting NAMI:  they blamed me for seeking psychiatric help, saying I brought “shame” upon the family by doing so!)  Independence from my alleged “caregivers” was liberating for me, as it is for so many other mental health consumers. 

 

Unfortunately, too many families as well as NAMI and mental health professionals don’t see it that way—they see “recovery” as only being dependent and perhaps qualifying for a pittance of SSDI or SSI funding, and not at all being independent and actively participating in the workforce like “normal” people.   Now I grant, not all mental health consumers are capable of doing this:  triage is in order, and some consumers will need to be cared for as dependents, some perhaps for a lifetime, and completely unable to work, while others will only be able to work part-time; but many others can recover fully, and recover well, only all too often they’re not enabled to do so; neither by the psychiatric system, by NAMI, by the overtouted Clubhouse system, nor by their alleged “caregivers.”  However, now in my full recovery, living a completely “normal” life and making a decent income, I am mentally healthier than I ever was.  For which I owe much more to my own gumption than I do to NAMI or psychiatry; and although I benefitted massively from sixty-nine months of excellent psychiatry, my life was also put on hold and I was reduced to a desperate, dependent outpatient by forty-seven years of malfeasant and inept psychiatric “help.”   Further, despite my mental illness, I also earned a college degree; I would make an excellent mental health aide to NAMI if I qualified, but alas I don’t, simply because my college degree is in economics instead of social work or psychology, which is but a most arbitrary distinction.  (NAMI’s peer-to-peer recovered mental health consumer assistants are required to have either social work or psychology degrees; but as far as I’m concerned, too often psychology or social work degrees are merely akin to degrees in the storied, infamous “basket-weaving.”  My college degree required mastering math and logic skills as well as learning a foreign language, I pointedly note.)

 

So, goodbye, and good riddance, NAMI!  Don’t let the door hit you on the way out of my life!     

Mental Health Writings: I criticized Indiana NAMI. Indiana NAMI “Read” My Complaint—and Banned Me!

 

I’ve been a dues-paying member of Indiana NAMI since December 2019, which also makes me a member of Indianapolis and national NAMI.  I had planned on attending Indiana NAMI’s Leadership Summit on June 17, 2023, its first live meeting since Covid.  However, I was unable to get the day off work.  So I e-mailed Barb Thompson, Indiana NAMI’s Executive Director, on June 6 informing her I would not be at the meeting, and thus would not be able to “confront” her (my word; I meant verbally, of course) for ignoring all my earlier e-mails to her raising issues about the Circle City and other Clubhouses (a most inadequate “mental health recovery resource” I’d participated in), as well as Indiana and Indianapolis NAMI, numerous e-mails to Ms. Thompson she never had the courtesy and respect for me ever to respond.  For which I properly felt miffed.  Well, this time Ms. Thompson “responded,” sort of.  She took my June 6 e-mail as “harassment,” reported it to Indiana NAMI’s Board of Directors, which acted on her complaint that very day, and, sure enough, later that day I received a copy of a letter written to me by the Indiana NAMI Board of Directors, dated that very June 6, informing me that henceforth I was “barred from attending any forthcoming NAMI Indiana in-person or virtual events, [Emphasis added—GF] specifically including the leadership conference.  If you trespass, appropriate steps will be taken, no matter how much NAMI Indiana would regret the need.  Additionally, you are barred from contacting NAMI board of directors, staff, or members and from appearing at NAMI Indiana’s offices.”  However, I was not removed from being a member of Indiana NAMI or any other NAMI body!  I simply could not attend or participate in any “forthcoming NAMI…events” indefinitely, nor could I contact NAMI in any way.  A perfect Catch-22 statement from Indiana NAMI’s Board of Directors!

 

Further, the Board accused me of stating “publicly” (I did so only by an e-mail to Ms. Thompson, not through any other forum.  I didn’t even tell personal friends of it) that while I would “confront” (the Board of Directors did get that right) Ms. Thompson, I would do so, I allegedly stated (which I didn’t) I would do so for “her behavior” (which is false; I did not use those words, which in the Board’s letter to me were put in quotation marks as though I’d stated them verbatim), when I was only going to confront Ms. Thompson on refusing to honor me by responding to at least one of my several e-mails to her!  Anyway, I had e-mailed Ms. Thompson on June 6 precisely to inform her I would not be attending the June 17 Leadership Summit, as I’d earlier planned, because I—was scheduled to work instead!  All of which was clearly stated in plain English! 

 

As to the original e-mails sent Ms. Thompson, which uttered specific complaints against the Clubhouse system (of which I was a member, by the way, though a deliberately inactive one) and the speech given on the Clubhouse system by one of its leaders back in 2019 (a speech I said at the time, in a private online chat, I though was nothing but empty public-relations fluff), for which I was barred by Ms. Thompson at that 2019 virtual meeting, and my $40 registration fee confiscated, I registered my obvious dissatisfaction, for which I had every right.  Indiana NAMI’s Board of Directors didn’t see it that way, however, as the Board wrote me on June 6, “The various individuals you contacted heard your complaints and responded to you their disagreement; they consider the matters closed.”  While Ms. Thompson did have what she euphemistically called a “conversation” over the phone with me about the Clubhouse, and I did receive one very condescending e-mail from one David Binet of national NAMI, it is simply not proper for only one party to a dispute to render the matters “closed!  As the old saying goes, “It takes two to tango,” two parties to a dispute to decide if the matters are closed.  Obviously, on my part, they were not.  However, I will give Indiana NAMI’s Board credit for doing one thing properly: it sent me a check by mail for the $40 improperly confiscated from me, which was the only thing the Board did appropriately.

 

I mentioned above that while I was barred from participating as a fully dues-paid member of NAMI (which I was, and still am, until the end of November 2023), my NAMI membership was not rescinded—I was simply suspended in midair, held in a state of limbo, by the Board of Directors.  I was soon made aware of this when I received unsolicited e-mails from Indiana NAMI asking me if I’d like to volunteer for certain NAMI activities (from which “forthcoming” NAMI activities I was indefinitely barred), would like to vote for NAMI officeholders, and would even like to attend the Indiana NAMI State Convention!  Yes, Indiana NAMI directly asked me if I’d like to participate in “forthcoming” NAMI activities I was barred from attending—and no, you can’t make this shit up!  I noted this discrepancy once again in an e-mail to Ms. Thompson (which I was at least technically barred from sending), but once again, as per usual, I received no response.  This, the personal slighting of me by Indianapolis NAMI’s former Executive Director, the degradingly condescending e-mail mentioned above by national NAMI’s David Binet, and the deliberate and ongoing slights and insults from Ms. Thompson and the Indiana NAMI Board of Directors has made me seriously rethink my NAMI membership; so, most likely, in fact, 99% assuredly, I will not be renewing my NAMI membership when it expires the last day of November 2023.

 

On my “Politically Incorrect Leftist” BlogSpot blog, I specifically criticized both the Circle Clubhouse, and implicitly the Clubhouse system, in blogs on April 18 and May 12, 2023, and specifically criticized all levels of NAMI, Indianapolis, Indiana, and national, in a blog also on May 12.  I stand by these criticisms 100%, and according to the letter I received from Indiana NAMI’s Board of Directors, these blogs caused consternation within NAMI.  Well, tough beanies!  Free speech is free speech, and if I’m wrong, let the Clubhouse system and NAMI prove me wrong!  As for me, I proudly refer all interested readers to my blogs, where the articles I’m referencing are very easy to find. 

 

            

A NAMI Paper on NAMI: Malfeasance at All Levels, Local, State, National

 I’m a member of NAMI (National Alliance on Mental Illness), have been since December 2019.  I joined as a mental health consumer hoping to find support in my recovery from my diagnosed psychiatric disorders, borderline personality disorder with chronic depression, and also to advocate for my fellow mental health consumers, to ensure they get the excellent treatment they deserve—treatment not only competent and evidence-based, but also given with empathy, compassion, and understanding.  Alas, I was to be disappointed.  Despite that they should be the focus of any group supposedly advocating for mental health, I soon found out that mental health consumers are given short shrift in NAMI at all levels, delegated to the “back of the bus” in favor of rich “caregivers,” i.e., families that can financially afford to support dependent adult children with mental illness, as well as also favoring both the Psychiatric Establishment and Big Pharma.  Tellingly, all three are major donors to NAMI.  As the old saying goes, follow the money.

 

Prior to Covid, in 2019 and into early 2020, I was feeling quite positive about my relationship with NAMI.  I met weekly with then-Greater Indianapolis NAMI Executive Director Julie Hayden, in friendly and extensive chats that made me feel valued as a mental health consumer.  I attended Indianapolis NAMI’s Christmas party and Hayden encouraged me to write on mental health issues (I am an extensively published writer and poet).  She even sent me a Christmas and birthday present (my birthday’s in December) on behalf of Indianapolis NAMI.  But all changed with the onset of Covid restrictions, which, it certainly does seem to me, NAMI at all levels—local, state, and national—used as a pretext not only to shut down operations, but to also have its staff members use as an excuse to take extended vacations, leaving ordinary NAMI members in a lurch.  Certainly, that was true of both Indianapolis and Indiana NAMI Executive Directors, the aforementioned Ms. Hayden, and Indiana NAMI Executive Director Barbara Thompson, who simply became unavailable for the next three years (Hayden went to another job), as well as NAMI local and state presidents, who neither answered phone calls, letters, or e-mails.  Which I, as a blue-collar Essential Worker grocery stocker, who had to keep on working in a public setting, and thus faced coming down with Covid myself (though I did get all my vaccinations, including boosters, as available), found not only wrongheaded but unconscionable.  Ms. Thompson has yet to respond to any of my e-mails over this period of time, which, quite frankly, I find rude and vulgar.  Same goes for one David Binet of the national NAMI staff, who sent me one very condescending e-mail in response to my expressed concern on both Hayden and Thompson being so incommunicado, and who also has never responded to any other e-mails from me.  Seriously—if NAMI employees lack the courtesy to even answer e-mails, how is that not egregiously rude and dismissive?  Does it not indeed show contempt for the rank-and-file NAMI dues-paying membership?  However, I do have to state that national NAMI’s chief psychiatrist, Dr. Ken Duckworth, has been unfailingly polite and responsive to my e-mails sent him!  The one sole bright spot in this whole affair.

 

In 2021 I attended two Indiana NAMI statewide virtual meetings by Zoom, and in both meetings, I was wrongly treated.  In the first, a supposed Leadership Summit, not only was my mute off, I responded only by silent “chat” to the remarks by a spokesperson for Indiana’s Clubhouse system, which, quite frankly, I found to be only public relations fluff, and lacking in substance.  For this, Ms. Thompson abruptly removed me from access to the meeting, thus causing me to forfeit my $40 registration fee.  She later contacted me (only once, and the only time she’s ever contacted me, in a period of two years) to have what she termed a “conversation” about this, where it was clear she had a clear misunderstanding of what I’d actually done, and the “conversation” was left hanging.  I have e-mailed her repeatedly on this, but she has not responded, and, as far as I’m concerned, Indiana NAMI owes me my $40 wrongly forfeited.  Indiana NAMI is having its first in-person meeting, another Leadership Summit, in late June of this year, 2023, and I promise all, I will confront Ms. Thompson on her behavior!

 

At a later meeting in 2021, I was victimized by another Indiana NAMI staffer, who pulled a bait-and-switch on me.  I submitted a query to the panelists, mental health professionals who had been mental health consumers themselves, asking for their feedback on the 47 years of inept and malfeasant psychiatric “care” I’d received at Indiana CMHCs and university clinics, which had put my life on hold and reduced me to a desperate, dependent outpatient not receiving the help I really needed.  The staffer host read my question, which pointed out the bad care I’d received, then asked the panelists to comment—not on the bad care I’d received, but on the good care they’d received!  This soon degenerated into a back-and-forth on art therapy, and I signed out of the meeting in disgust.  Again, this was neither addressed nor redressed.

 

As for national NAMI, the same indifference to my concerns as a mental health consumer NAMI member have prevailed, with the sole exception of Dr. Duckworth, who expressed warmth toward me and a wish that he’d been able to interview me on my experiences for his recent NAMI book, You Are Not Alone.   I have submitted my mental health writings to the appropriate NAMI body for publication, but they have not been published, because, quite frankly, I write in an adult style and format for adult readers.  I simply do not write in that breezy, superficial 6^th-8^th -grade-level way NAMI demands of its writers (including the hapless in this regard Dr. Duckworth), so that even a half-literate housewife does not feel intellectually “challenged” by NAMI’s message, which comes across to me, a college graduate, as ofttimes far too superficial and saccharinely overoptimistic.  NAMI would do well to behoove itself of both George Packer’s “The Moral Case Against Euphemism,” his devastating critique of “woke” language and fashionable “dumbing down” in the April 2023 issue of the Atlantic; and the late trenchant writer Barbara Ehrenreich’s Bright-Sided (Picador, 2009), her equally devastating critique of “positive thinking” and eternal optimism (for which she urges substituting—realism).  As a NAMI member, of course, I receive its state-affiliate newsletters and its national magazine, the NAMI Advocate, which I routinely find hopelessly superficial and tritely breezy in their presentations, and overoptimistic to the point of being treacly in their subject matter.  No, this is not good writing, not by a long shot.  It’s not even conventionally adequate.  No, it’s just irritating and simplistic.  Certainly, all that comes across in the latest issue of the Advocate (Spring 2023), in its articles devoted to “Identity and Mental Health,” where “identity” and “culture” are given, in tune with the superficial approach of postmodernism, very static and set-in-stone connotations.  Reality, needless to say, is far more complex and flexible.  While I personally have a superficial “identity” of cis white male, I also have deeper and more substantive identities of blue-collar unionized Essential Worker; university graduate in economics with a strong math and statistics background; extensively published writer and poet, even at the national level; ex-Catholic militant atheist who has moral as well as intellectual objections to religion; abused child and adolescent, victim of multiple abuse from parents and relatives, teachers and bullying classmates, ignored when not denigrated; and that far from exhausts all my various “identities,” which all come together to give me my own particular, integrated, unique personality!  (I should also add, not just “mental health consumer,” but “victim of psychiatry” as well!)

 

Thus does all this sum up my thumbnail sketch of objections to all levels of functioning that characterize NAMI today, of which I am, as well, a dues-paid member who will renew his membership at the proper time, and who also promises to fulfill my “proper role” as a NAMI member by being critical of it when it deserves criticism, at the local, state

NAMI Papers on and about the Circle City Clubhouse

 A fit retort, these three mental health articles of mine below, on the pretensions and ineffectiveness of the Circle City Clubhouse, the Clubhouse system generally, and what real mental health recovery looks like.  Sadly, mental health consumers such as myself have few resources available, and in fact, more pseudo-resources than actual resources-- among them the Circle City Clubhouse and Indiana NAMI, bot of which I'm a member of, but a highly distressed one. --GF.