NAMI's Identity Crisis

The upcoming election is about involuntary psychiatric care.

Posted Jun 05, 2017

The National Alliance for Mental Illness (NAMI) was started in the 1970's by the parents of people with serious (often psychotic) mental illness. Parents suffer as they watch their children suffer, and NAMI's mission of support and education continues to be invaluable to those will psychiatric illnesses and to their families.  With time, however, NAMI has grown to include those with less severe mental illnesses. It's left the organization with an ongoing rift: Who do they support? Is their message recovery, hope, and ending the elusive problem of stigma? Or is one that supports those with severe mental illness over and above those with more treatable disorders who often recover? 

One in five Americans will suffer from a psychiatric disorder over the course of any given year; half of us over the course of a lifetime. The numbers are much smaller if you include only severe and disabling disorders, such as schizophrenia, bipolar disorder, or severe and chronic depression. NAMI has an identity crisis, it's been going on for years and we talk about this in our book, Committed:The Battle Over Involuntary Psychiatric Care.

On his blog, Pete Earley talks about the upcoming NAMI elections. The president of the board of directors says the election brings the organization to ask the question of whether they are looking for a "big tent" or a "small tent." There are 16 candidates running for five open seats on the board, and elections take place at the group's annual meeting on June 30. Earley notes that four candidates are running with a focus on serious mental illness. (Earley's blog has quotes and letters from the involved parties.)

I would contend that the issue is not one of tent sizes. When you poke, it narrows down to who is in favor of requiring people with psychotic illness to get treatment, even if they don't want it. The pro-serious mental illness forces typically fight hard for laws for outpatient commitment and for liberalizing the criteria for inpatient involuntary admission. And treatment is not about psychotherapy; it's about medications and giving them to people who may not want them. And it's often about diverting resources away from those who want treatment to those who don't, with the idea that those who don't know they need help are society's sickest and most vulnerable people, and so they need our help the most.

Johns Hopkins University Press, with permission
Source: Johns Hopkins University Press, with permission

My thoughts? The Treatment Advocacy Center does a great job of advocating for those with severe, chronic, and disabling mental illnesses. In the clinical practice of psychiatry, diagnosis can change over time, and we're not always sure what's wrong with someone. People who look very sick can get very well; it's not always clear who those people with serious mental illness are. And people who function perfectly can be in terrible psychic pain: they may not define themselves as seriously mentally ill until after they've died of suicide. NAMI is a big organization with advocacy power. I worry that if they pick the small tent off the shelf—if they focus too much on forced care—they will lose their base and their voice.

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