I joined NAMI yesterday for "the research." Here's what was in my in-box from NAMI this morning: The New York Times (NYT) Patient Voices series offers intimate glimpses into the lives of NAMI members living with schizophrenia or schizoaffective disorder.
This is not just a random NY Times story. It is by and about NAMI members, and, judging from the e-mail below, not just any NAMI members, but NAMI-trained speakers who spread the gospel according to NAMI. Right above this NY Times series is an advertising banner that proudly states "Ask the doctor if NEW 23 mg/day Aricept is for your loved one." NAMI has been heavily criticized, by Senator Chuck Grassley for one, for receiving most of its funding from pharmaceutical companies. If you are familiar with the NAMIWalks program, clicking on the map for just about any state quickly reveals that pharma is a large contributor to this cause.
NAMI turned me off very quickly when I first started to look for help for my son. I felt that if I listened to what they say, my son would be a patient for life, in large part because it emphasized the need for medications every step of the way. It had a dreary view of mental illness that I didn't want to buy into, not just for my "loved one" but for the sake of my own mental health. A lot of my complaints have to do with the fact that NAMI speaks words of sadness and impact, of stigma and of lives less lived. Schizophrenia to NAMI is something to be managed and endured through a thin veil of pervasive sadness. Yes, sad is how it appears to me.
Through compelling vignettes and an interactive website, visitors learn how these illnesses can impact every facet of a person’s life, from relationships and stigma to work and faith. Listen to their stories and then join the conversation on the NYT's Well blog.
NAMI’s In Our Own Voice program (IOOV) brings these kinds of personal stories to life. IOOV is a national, public education program in which trained speakers share their stories of mental health recovery with students, law enforcement officials, educators, health care providers, faith community members and other audiences.*
Personal stories are uniquely powerful. They illustrate how one can manage his or her illness and live a full, rewarding life. They put a face to mental illness and remind us that mental illness affects all of our communities. They show us that recovery is possible and encourage others traveling along their own paths to wellness.
Speakers not only educate others, but also find great fulfillment in sharing their experiences. NAMI members have many inspiring stories to share through IOOV, NAMI.org and our many publications. If you have a story you'd like to share, please e-mail yourstory@nami.org.
With your help, we can continue to educate communities across the country about mental illness one story at a time.
_________________________
*NAMI's In Our Own Voice program was started with a grant from Eli Lilly and Company.
Posts
It's not NAMI, but it's NAMI's message in a nutshell: "To get on with your life, you need to lose hope". Title of a blog post written by a Danish consumer. Sad, yes.
ReplyDeleteNAMI.
ReplyDeleteOh gosh, don't get me started with NAMI.
In my opinion, no single organization has done more harm to more people in the history of this country, than NAMI.
If a person is searching for answers about what we call "mental illness", and does a google search, begins to read... each of the organizations, each of the online sites has a link back to NAMI....
And who is NAMI, what is NAMI?
A front-group for the drugmakers. Period.
Eli Lilly, Merck, Pfeizer.... they make the drugs, and NAMI sells 'em.
Pretty nice setup... especially when one considers that NAMI never gets called into the federal lawsuits, never indicted, never charged, never convicted....
Only the drugmaker, never NAMI.
NAMI lobbies the states, each of them - for more and more off-label prescribing for children.... more and more kids on mind-altering, brain-damaging, body-injurying, spirit-numbing drugs....
Drugs that don't work by the way, unless shutting down the higher functioning of the brain is considered "working"...
In this case, nothing works quite as well as psychiatric drugs, especially the nueroleptics....
NAMI.
Every day, somewhere in this country, NAMI gets praised... for all their "good work"....
I think of Peter Breggin's speech in the 1990's, the one he made in Harlem, about the Violence Initiative, the targeting of inner-city youth with these drugs....
His talk about the 1920's Germany (pre-Nazi)... and psychiatry's training ground for the SS... the extermination of up to possibly 100,000 "mentally ill" by 1940 (long before the Jews, the gypsies, the Roman Catholic priests were targeted by the Nazis) -
http://breggin.com/index.php?option=com_content&task=view&id=288
And I think about our country, where we are today... with psychiatry.
Today, we have NAMI.
NAMI does all the dirty work.
It's behind all the injury, all the premature death of the "mentally ill."
I say, "Friends don't let friends join NAMI."
(Unless of course it's to do some underground research).
Other than that, I have no opinion.
Duane
"Other than that, I have no opinion."
ReplyDeleteI love getting people started on NAMI! Please, more!
"More?"
ReplyDeleteHopefully, we will have some U.S. Senate subcommittee hearings soon...
What did NAMI know, and when did they know it? (re: the injury and death to children from these drugs)
A full investigation by the FBI...
The case assigned to the U.S. Dept of Justice - with prosecuting attorneys digging through file cabinets, and seizing computers of the top-brass with NAMI national....
These are not civil matters....
NAMI is involved in criminal activity.
It's called Medicaid Fraud, and NAMI has been involved in it for years.
Years!
"More?"
Prison time for NAMI's Executive Director, Michael Fitzpatrick.
"More?"
Stay tuned.
You'll see more....
Plenty more!
Duane
And, how does NAMI get its followers? Vulnerable family members and newly diagnosed "patients" are fed to NAMi through the courts system in this country. Drugs convictions = NAMI membership. NAMI is revered by doctors who do not want to get involved with "difficult to treat patients". NAMI's marketing makes them look like the go-to organization for compassionate understanding when faced with the devastating .... blah blah - the jargon of the psychiatric industry. The language of chronic sickness is their hook for so many people who are first slammed with mental health issues.
ReplyDeleteNAMI puts the onus on the families of people in mental distress to keep the "patient" on the drugs and following the doctor's orders. (NAMI's literature even says something to the effect that families should not listen to the person suffering with the mental distress when they insist that the drugs are not working. Keep encouraging them to take their prescriptions.)
NAMI is, just as Duane has said, a front for the pharmaceutical industry. The latest figures were up to 75% of their funding comes from Big Pharma.
I am with Duane, let's call attention to NAMI's criminal behavior. Only, this boils down to the the money trail - which is too thick and too connected to deep pockets and government. Is there anyone other than Grassley who has even attempted to draw attention to this industry?
"The language of chronic sickness is their hook"
ReplyDeleteExactly. You've identified what I object to about this organization.
Kristen and Rossa,
ReplyDeleteThey were once the 'National Alliance for the Mentally Ill'... now, the 'National Alliance on Mental Illness'.
I think they should go with, 'National Alliance for Mental Illness.'
No other group is as Pro-Mental Illness as NAMI!
They call themselves, "America's voice on Mental Illness.".... Well, they are... they're the experts, alright, on "mental illness" (whatever that is!)....
They know nothing about mental wellness. That's the problem...
Just recently, reluctantly, they've begun to look at recovery...
Kinda late in the game... Too little too late.
But that's what happens when a person or group tries to "serve two masters"...
NAMI simply cannot be objective, they cannot be trusted to be true advocates, and/or on the side of people/families who suffer from these symptoms (they are not "illnesses," they are symptoms) if they have such enormous amts of money coming in from Pharma....
NAMI.
"America's voice on mental illness."
Yes, they are.
They do "mental illness" better than anyone!
Duane
So, how do we fight 'em? The problem with creating a group, joining an organization, is that they all have a party line and, of course, it is impossible to address all the specific concerns of the individual members. I guess I'm too independent to swallow everything. On the other hand, sometimes you've just got to band together.
ReplyDeleteMarian - you were the first commenter but your comment went in my spam box, and I just found it. I'll run the Danish blog through google translate - google translate is getting better and better.
Rossa,
ReplyDeleteYou raise a good question, and I'm not sure of the answer.
I've met people who are pro-orhtomolecular, etc, who are convinced that once the body is strong, the mind will follow...
Others who believe that changing beliefs, building relationships, cognitive therapy, etc will run any physical conditions outta town....
People in these groups may have a common mistrust for psych drugs, especially with kids....but it's quite a dilema to find common ground.
On the other hand, I think it would be safe to say that the public, at large is beginning to get the news on psych drugs, and the fallout from long-term use especially.
I do think that it's time for NAMI to be investigated by the FBI, and then charged by the U.S. Dept of Justice... I know it sounds crazy to some, but there has been law-breaking going on at NAMI for years.
I've called on the FBI in Dallas to conduct an investigation... Anyone can do so, by contacting their local FBI - The Alliance for Human Research Protection has some good links to pass on to the FBI - www.ahrp.org (keyword, 'fraud')....
Jim Gottstein defines Mediciad Fraud in his initiative -
http://psychrights.org/education/ModelQuiTam/ModelQuiTam.htm
The drugmakers continue to get charged/convicted of Medicaid Fraud..
It's NAMI's turn. As per the earlier email... The drugmakers make them, and NAMI sells 'em... Illegaly, through state Medicaid programs, and promoting their use privately as well.
I think if we could have a criminal charge stick with NAMI, we could turn things around.
It would send the message needed to rally people toward a change.
Things would then have to change
People would want to help kids, and would realize that NAMI National was filled with lawbreakers.
There would be the incentive needed to form something new, and it would get done, by some good people... somehow, good people would come together, and get it done... Even if they disagreed on some issues.
Duane
"How do we fight them?"
ReplyDeleteBy not wasting a moment's energy fighting them. Stay focused on the primary objective: recovery of your loved one.
I think we get fixed on, and fixed on opposing, these factions because we doubt the validity of our own arguments.
We need to move beyond the traditional conversations of right and wrong and validation and invalidation to a conversation of possibility and action. There is nothing to be gained from diverting attention to these causes. The manner in which they will be defeated is by demonstrating one person at a time that there is a better alternative, measured by the result and not by winning an intellectual argument.
I don't know about that. You can show them all the anecdotal evidence and longitudinal studies that exist that show a better way. They are willfully blind.
ReplyDeleteWe do need to confront them, because we need to create a different paradigm for people who want OPTIONS
So that others don't get sucked into SCAMI
Rossa: the essence of the post is that you'd have to give up on any hope to ever succeed with anything in life (and the author equals success in life with the usual values: a well-paid job, a nice home, a nice husband, nice kids... everything "nice") when you "have a mental illness". It will prevent you from achieving any of the mentioned niceties, no matter how hard you struggle. So why struggle at all. Have "insight", pop your pills, and be a "good patient", and you'll see how much better you'll feel, than while you still fought the idea of being chronically ill and incapacitated.
ReplyDeleteThe voice of a patient, a good one, a model of a consumer, you might say. I ask her, if there maybe was a third option beyond either being "normal", and having all the niceties, or being "mentally ill", and having "insight", a monthly SSDI/SSI-check, and the pills. No answer. (And I didn't expect any either. I once commented on another of her posts where she vented her indignation about being compared to a junkie, her "meds" being compared to recreational drugs. Guess what I wrote... and guess if she -- and everybody else at the journal -- was offended by me calling a spade for a spade...)
Another thing: I've thought a lot about how to fight them most efficiently, and I still do. It may not always look like that (on my blog), but I agree with anonymous and brainzaps. "What you resist, persists, what you fight you get more of." -Carl Jung. They operate like a cult, you can't get at them with logic. So, creating alternatives is probably the most efficient thing to do. It doesn't need to be a Soteria House, or a hearing voices group to start with. Presenting alternative perspectives, like you do it here on your blog, IMO already is creating an alternative.
ReplyDeleteSome time ago, I watched a debate about "depression" on TV. The participants were one of Denmark's leading "experts" on the matter, and pronounced ect-proponent, Tom Bolwig, representing the bio-medical view, of course, and psychologist Allan Holmgren, representing a cultural, socio-psychological view. Now, this debate could very easily have developed into an open war between the two, as debates like this very often do. But instead of playing Tom Bolwig's game, instead of doing nothing but reacting to his bio-medical arguments, trying to prove them wrong, and thus focussing entirely on the bio-model, Allan Holmgren kept his cool, and replied in a calm "yeah, but..." fashion, which allowed him to present his own, cultural, socio-psychological model. It was probably the best debate of its kind I've ever watched, at least on Danish TV. And guess, who came out of it as a clear winner, with Tom Bolwig visibly getting more and more uncomfortable with the situation, his arms more and more firmly folded, his eyes more and more frequently fixed on his shoes. Because all he'd been prepared to do was to defend the bio-model against an open attack. But the open attack never came.
So, we just keep plugging away, doing what we're doing. When it begins to look like an exciting alternative, when somehow pharma has kept its deep pockets out of it, or people no longer trust pharma, then maybe, maybe. . .
ReplyDeleteStephany has a piece in a recent post involving a doctor who is corresponding with Robert Whitaker about the patients he sees, and from what I'm reading, he is struggling to plant seeds with a public only too used to demanding drugs even if they are clearly miserable on them. And then there of course is Will Hall not being allowed to speak at the Alternatives Conference in Anaheim, of all things! Maybe things are looking up if Will is getting into the category of people disinvited to a conference.