NAMI has two sides to their story; we all do.

Mental health advocacy is much more complex than most people want to admit.

Recently it has become fashionable in mental health civil rights communities to bash NAMI. It’s almost reflexive, “They take drug money.” Well, they’re working on it.

Yes, NAMI has harmed many people. But they have also helped many people, and the harm they have done was, for the most part, unintentional. Some NAMI people, not all, are looking for answers. When we reflexively bash their mental health advocacy efforts, it’s hard to keep a conversation going.

Corinna West talking to Tomas Hernandez from NAMI Kansas City about mental health advocacy

Corinna West talking to Tomas Hernandez from NAMI Kansas City about mental health advocacy

We are always looking for people to join our conversation: What do we do if medications and labels help some but hurt others?  Creating these solutions is the goal of our UnDiagnosing Facebook Group. Please join us.

I went to a national conference hosted by the Foundation for Excellence in Mental Health Care,  the nonprofit inspired by Robert Whitaker’s award-winning book Anatomy of an Epidemic, that says that psych meds help some people but hurt others.

Some NAMI people have found this book and are starting to ask for more information. It’s important not to scare them off. Keep in mind something I heard at this FEMHC conference from Pablo Sadler, the Mental Health Medical Director at the Bureau of Mental Health for all of New York City:

“You can’t call me a butcher and then ask to sit down with me.” This is not effective mental health advocacy.

Yes, there are some problems with NAMI and their mental health advocacy approach:

Of course, we need to be honest that NAMI has done some things that harmed people. We also need to lump in DBSA and Mental Health America, the other two national mental health advocacy organizations for all “mental illnesses,”  that have many of the same problems.

In our UnDiagnosing discussion group, we’ve had to learn that we can’t really get anything productive done talking about NAMI. We’re mixing people who have experienced profound harm from NAMI with current and former NAMI staff and members, who have spent their whole lives doing their best with limited information.

So instead, we talk about what we can do to make things better. We are trying to develop some kind of future communication to explain how emotional distress can be described without illness terminology. This language shows immediate ideas for solutions.

NAMI is really none of Wellness Wordwork’s concern except that we need help from NAMI members that are getting offended by some of our fellow civil rights workers.

The NAMI Kansas mental health advocacy booth at the 2011 Recovery Conference

The NAMI Kansas mental health advocacy booth at the 2011 Recovery Conference

The basic trauma is that NAMI’s past mental health advocacy said, “You have a biochemical imbalance and may be sick for the rest of your life. Recovery involves taking meds for the rest of your life and there’s no such thing as complete recovery.”

But no one really came through with any evidence for a genetic or biochemical imbalance. This lead people into medications and labels that may be harmful. The recent NPR story on serotonin not being linked to depression said, “We know it’s not biochemical but we just tell people it is so they’ll take their meds.”

This is a national beef against NAMI’s mental health advocacy. If the meds do indeed increase disability, then “stay on your meds” is a problematic thing to say. And that exact sentence was on the front page of NAMI’s website for a while.

Why we need to not scare NAMI people off.

When you dig, though, it turns out 99% of NAMI members didn’t cause those problems.  If the disease model is all you’ve heard, and you haven’t had time to research the data yourself, it makes sense to call things a disease. Few NAMI members and staff have done this research, so they have no idea what we are talking about when people like me say, “You are killing us. You are committing genocide.”
Rick Cagan, Cherie Bledsoe, and Gary Parker accept the Collaboration Award in 2011 for passing a consitutional amendment removing discrimnatory language

Rick Cagan, Cherie Bledsoe, and Gary Parker accept the Collaboration Award in 2011 for passing a consitutional amendment removing discrimnatory language

So then of course NAMI people say, “No, I’m not. I’m  just out here doing my best.”  And most of them have done it for free, and for years. It hurts to get questioned like that.
Then they walk away from my pain and rage and anger because it doesn’t make any sense at first glance. Just like how cops that who are called racist have a hard time hearing black communities experiencing prejudice.
But if we want our research to enter the mainstream, we can’t go around calling people butchers. That’s the point of our group. We need everyone to build the message to make it plausible.  And if we believe in the ability of people to recover completely, we also have to believe in the ability of the mental health advocacy organizations to make changes.
As Ken Braiterman, the chairman of my board says, “Every NAMI chapter is different. Some are much more progressive than others in their mental health advocacy. If you’ve seen one chapter, you’ve seen one chapter. That’s all you can say.”

Some signs that NAMI is looking toward a future with distress model mental health advocacy

  • NAMI of Westside Los Angeles has invited Robert Whitaker to be their keynote speaker.
  • Some sources say that NAMI National has resolved to stop taking pharma funding (although their website lists current pharma support)
  • NAMI did separate themselves from the Treatment Advocacy Center a few years ago.
  • NAMI is planning on renaming their “consumer council.”
  • They talk about recovery as an outcome much more in their mental health advocacy.
  • Their national board includes people in recovery who know all about the true outcomes research and have made presentations on the lack of long term efficacy for medications.
My friend and frequent guest blogger, Edward Duff,  worked with NAMI for 20 years as their policy analyst. This is another word for political expert or mental health advocacy lobbyist. He has now completely come off medication after coming to Robert Whitaker’s talk here in Kansas City about a year ago.

Edward Duff talks about NAMI mental health advocacy:

If someone said, a car drove by in the road, and I had seen a truck, I would say, “I saw a truck go by, myself.” Nobody but us would know if we saw the same vehicle go by, or if what we saw happened at or near the same time and place. I read a stereotypical comment. I said that I read one and that it was not true in my own experience, and I thought it to be disingenuous to compare a valuable mental health education, advocacy, and support alliance that is doing its best with an uneasy coalition of stakeholders with varying agendas and viewpoints, with dogs in different hunts, so to speak.

My “opinion” of NAMI’s national Consumer Council is from direct on-scene experience, from personal acquaintance with many of the key participants, and extends over a 12-year period. I volunteer for NAMI and have mever been their employee. I have some rather bad things to say about several affiliates, and can point out the best one in the entire nation at NAMI of SW Missouri. They do vary a lot, and I prefer the consumer-sensitive ones. Others have different interests and infrastructure, financial support level, and take on all who wish to join, so it is really a grassroots, volunteer-propelled organization with a growing level of consumer-derived policy advocacy output.

Of course, the family members who have been injured by diagnosed loved-ones have very different concerns than those loved-ones with the diagnoses. Some of us actually straddle these silos or competing interests and find it to be an often uneasy alliance for a very good cause, finding solutions to what the mainstream calls “mental illness.” It is very apparent to me that there is no such thing, but if I were advocating about “the blues”, or “rapid ideation,” most people would not understand initially what I was talking about. The same problem crops up for the term, “consumer.”

I spend too much time explaining that we are trying to gently and respectfully talk about the circumstances of many, often feared, people. These people have been rented out to homes and institutions like cash cows, and incarcerated for being different than others, even if they had been doing nothing illegal. Hospitals, jails, and nursing homes are keeping people locked up who could live independently, and it’s starting to look like that can’t be separated from a profit motive.

The basic point is that NAMI is not going to provide any radical and quantum mental health advocacy changes like the revolution that we are proposing. However, NAMI bashing is a good way to exclude their members and staff from helping us to make this quantum change possible. Sometimes we have to put aside our past traumas in order to build a future for everyone.

We need all hands in truly honest mental health advocacy. Who can you reach out to today?

Wordworks Blog Author: Corinna West

Corinna West is the founder and creative director of Wellness Wordworks, and is an Olympic Team Member and has a Masters Degree in Pharmaceutical Chemistry. Her Instant Peer Support might be the first in the mental health sector to remove the need for government and charity funding by creating a profitable interaction involving only our business and our direct customers.

11 comments to NAMI has two sides to their story; we all do.

  • ce harph

    No one in NAMI has ever insisted that I take medication. Neither would NAMI stop stating that medication when properly prescribed and used can be helpful if they no longer recieved money from PHARMA. I have been a NAMI member for seven years now. NAMI has used money from Astra-Zeneca to train me and 1000 others as peer support group facilitators. Even so I do not see that NAMI has any sort monopoly on truth. In fact, I doubt anyone has the “Truth, the Whole Truth and Nothing but the Truth.”

    What I do see is that earnest, thoughtful people from disparate perspectives of society have nuggets of value to others. I am thrilled to see thoughtful people such as Corinna West and Tomas Hernandez and Rick Cagan and others listening to each other. If such complex issues as the current societal and legal implications of an MI diagnosis are to progress to a better understanding and improved lives then all people of good will must be heard and their contributions incorporated into the outcome. For so many decades we have allowed first one loud voice then another to dominate the arena. When we all talk together in calm and thoughtful dialogue our united wisdom can lead us to a better outcome.

  • This is the problem with Astroturfed organizations: The hard work of people of good will is exploited to legitimize a propaganda conduit, often without their knowing.

    What looks like grassroots is artificial.

    And NAMI is not even the worst offender among Astroturfed mental health organizations! Some are nothing but a lobbying office near Washington and a board of directors packed with the usual bought-out MD suspects.

    When NAMI was spreading the “biochemical imbalance” story far and wide, loud and often, it was a mouthpiece for drug company interests cynically using the influence they bought by funding the organization.

    I’m sure for the most part the folks doing real, local grassroots work were not making those public relations decisions.

    Exposing pharma’s influence in Astroturfed organizations is essential to debunking distorted public relations messages and government lobbying bought by pharma.

    NAMI has fairly come under fire for its part in this.

    Criticism of its public relations role (and that of its Astroturfed brethren) may have accomplished some good. Perhaps the time to bash NAMI has passed.

    With the discrediting of the “chemical imbalance” theory and the decline of simplistic biopsychiatric solutions, the mental health discussion has become much more complex.

    If NAMI as an organization is now alert to its own conflict of interest, it may be able to salvage credibility.

  • The NAMI Board of Directors voiced thier position on forced outpatient treatment in 1995 –

    http://www.nami.org/Content/ContentGroups/Policy/Updates/Involuntary_Commitment_And_Court-Ordered_Treatment.htm

    As their website points out, the decision to back forced treatment came from listening to the grass roots of the organization.

    “Friends don’t let friends join NAMI.”

    Duane Sherry, M.S.
    discoverandrecover.wordpress.com/freedom

  • Correction

    The NAMI Board of Directors is in favor of “involuntary commitment” and “court-ordered treatment.”

    I guess they think it’s okay to lock people up as well as drug them down.

    Duane

    • NAMI has been involved in Medicaid Fraud for a number of years… by promoting the “off-label” prescribing of drugs to children and youth. In fact, they haved been charged with “co-conspiracy” with drugmakers in federal court.

      This article gives the details on what constitutes “Medicaid Fraud” –

      http://psychrights.org/education/ModelQuiTam/ModelQuiTam.htm

      In short, NAMI gives its approval for forced treatment, and helps Pharma illegally push its drugs on children and youth.

      I’m not quite ready to hold hands with NAMI members and sing Kumbaya.

      NAMI does not need to be reformed.
      It needs to be replaced.

      Duane Sherry, M.S.
      discoverandrecover.wordpress.warning

      • I would love to hear any ideas you have about how to replace NAMI. I agree that there are some serious problems with the organization. My of my friends have been deeply traumatized by NAMI but also some of my friends have spend their lives working for NAMI. I hate their position on ECT. 1995 is a long time ago to still be a position paper on their site. The question is just, “How do we best get the message out that medications help some people but hurt others and may be increasing disability?” That it’s time to update their information?

        If starting from scratch is the best way to get this message out, then I’d love your ideas on how to fund that. For now, I don’t really care what NAMI does, I just want their members and staff to be able to hear our message so they can find their way to bring it to their local organizations or to find a way out of the organization. Whatever works. I like R. Buckmininister Fuller’s quote, “One can not change an existing system; one must create a new system that makes the old system obsolete.” I would love, love love to hear your ideas on how to do this.

  • Denver Nobles

    The one thing that gets me going is the organizations do not recognize first that mental health issues is what they have in common which in its way is almost discriminatory. Mental health organizations have not taken in consideration the duplication of what each is doing to work on,let alone recognize the fact that the duplication is the unsuccessful part of being able to work on Recovery issues at hand. MH organizations are no different than PHRMA in the context of what their are doing for maintainenance of diagnosis and meds with no true existence other than printed material for education that is not being used to its fullest. No matter what conference you go to those of us find the commonality and have answers to move away not repeating or changing mental health in my forty one years of diagnosis. The above mentioned about how organizations within an organization are different are resisitant to what is working and what is not backed up in black and white in confirmation that one organization is better than the other. So those of us with Mental Health cannot get correct info based on the very difference of the said organizations to realize the one thing they have in common is that recovery cannot occur if they are on different pages doing the same thing and not recognizing the working together doing different things instead of the same having enough of education for Recovery.

    • If you click through the links on this site you’ll find plenty of organizations doing things in a different way, and plenty of people who have found complete recovery.

  • I work doing outreach for a NAMI chapter in LA County. To be honest NAMI is a very good organization here however we do go by what is being confirmed by NIMH. I am a firm believer in alternative and complementary therapies for mental health which isn’t studied by NIMH from what I know. We had a presentation with a practitioner who does neurofeedback and it was very popular. I have never been told that’s not part of NAMI’s beliefs. I’m even presenting a health and wellness discussion at a meeting in November. It is hard to get young people involved in NAMI. As we get more people who are in their 20-40’s involved the new treatment options will become part of NAMI. The older people who are almost all volunteers are tough to present revolutionary ideas to. Almost all the material I see for their programs is updated yearly. It takes a lot to bring about change in treatments and luckily LA County is a strong NAMI area and it’s open to alternative therapies. The more we get the word out about all the treatment options the better it is for NAMI and for everyone’s mental health. This site is a great resource. I’ll keep checking back and passing it along to NAMI as well as use it in my home.