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.
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 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.
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.
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.