(6-5-17) The president of the board at the National Alliance on Mental Illness sent out an email last week about “small tent” and “big tent” thinking.
Members inside small tents were described as those who want to focus exclusively on serious mental illnesses, defined as schizophrenia, bipolar disorder, and severe and persistent depression (SMIs). Big tent members were described as wanting to expand NAMI beyond SMIs to include autism, ADHD, and eating disorders as listed on the NAMI website.
This argument has been painful for me because I care deeply about NAMI. Because I do, I reject the “small tent” and the “big tent” thinking.
There should be “one tent” with enough seats inside it for different points of view.
Being pragmatic, I realize strongly-held opinions can divide us. But I also believe NAMI can work through whatever dissension exists by accepting five Cs — civility, compromise, consensus, communication and cause. While we may not agree on every issue, our joint “cause” must be working together to help individuals with mental illnesses. There should be no “us” vs. “them.” There should be “we.”
What is NAMI?
To me, the soul of NAMI is not its board or its national staff. They are reflections of NAMI. To me, NAMI is its people.
I have had the privilege of visiting NAMI chapters in every state except Hawaii and Mississippi.
Every local chapter I have visited is concerned about severe mental illnesses, especially individuals who are homeless.
Every local chapter I have visited endorses Crisis Intervention Team training and wants to end the inappropriate arrest and incarceration of individuals with severe mental illnesses.
Every local chapter I have visited wants to end emergency room psychiatric boarding, wants more crisis care beds, and more meaningful community services for the sickest of the sick.
Within these chapters, I have heard strong disagreements about the use of Assisted Outpatient Treatment, the value of the recovery approach model and empowerment, the necessity of engagement and the role of peers.
But these arguments are about how to best help someone. They are not disputes about whether or not NAMI cares about individuals with SMIs. Based on what I have witnessed at the NAMI chapters I have visited, it’s clear to me that NAMI members care deeply about people with serious mental illnesses.
SMIs are what bring nearly all of us into the NAMI tent – and with good reason. Baltimore psychiatrist, Dr. Dinah Miller, co-author of COMMITTED, theorizes that individuals with non- SMI-psychiatric illnesses generally get treatment and then continue on with their lives, often leaving NAMI behind.
Let’s talk about Branding.
On the national level, Board President Steve Pitman and Executive Director Mary Giliberti have said that NAMI has always and will always focus on SMIs. While doing that, they want to increase NAMI’s brand recognition and growth, in part, by establishing partnerships with other organizations.
I do not believe forming alliances with other groups needs to weaken NAMI’s focus on serious mental illnesses.
Several years ago, I noted in a blog that many politicians in Washington D.C. care about two things: votes and money. I wrote:
A possible solution would be for groups such as the National Alliance on Mental Illness, Mental Health America, the National Alliance for Research on Schizophrenia and Depression, the Treatment Advocacy Center, the Depression and Bipolar Support Alliance, the Bazelon Center for Mental Health Law, and the Depression and Related Affective Disorders Association would be for them to put aside their individual differences and agree to meet together as part of an umbrella lobbying group for better mental health care…There are dozens of advocacy groups scattered across our country that could be part of a larger coalition. If other stakeholders, such as the National Sheriff’s Association, American Bar Association, the American Psychiatric Association, and AARP joined us, then politicians might finally start listening because there is strength in unity.
Creating collaborative relationships can help us gain political clout and a stronger voice in Washington. If teaming with the NFL helps us become a household name, that’s truly amazing and wonderful because most people currently do not know who to call when a psychotic episode happens. I didn’t know who could help me.
I want NAMI to be that first call.
The question now causing dissent on the national level is whether NAMI can create these alliances and grow without abandoning its original focus on SMIs. Are these two goals mutually exclusive? I don’t believe they have to be.
Why do some feel left out?
The board needs to hear members who feel their needs are not being met.
From my perspective, much of this disappointment is based on how we talk about recovery. Telling a family that recovery is possible when they have an adult son stuck on the “homeless-jail-streets” cycle for twenty-five years because of a serious mentally illness is hurtful. These are destructive illnesses and we shouldn’t minimize that – especially to parents whose adult children have ended their own lives. On the flip side, showing only tragedies are not representative of the whole. Most people diagnosed with a mental illness do get better.
Which brings us back to the central question. Who should NAMI represent?
Psychiatry is among the most inexact of the sciences.
Defining and diagnosing mental illnesses is not as clear cut or simple as it might seem. Consider this heartbreaking email that one of my readers sent to me in 2011.
My son died of suicide. He was 36… My son was a sensitive highly intelligent child and adult, diagnosed with Major Depression, Dysthymia, Anxiety, Borderline personality disorder, Obsessive compulsive personality disorder, non 24 hour circadian rhythm, chronic nightmares and sleep apnea. In addition he had chronic pain in the thoracic area for which he was on Fentanyl. We were with psychologists who did not know how to address my son’s multiple problems. He was afraid to go to big hospitals where there might have been professionals (who might know) how to help him. He was afraid they would tell him that he was crazy. He was not, and your son was not either. That word scares the general public and medical professionals. I can see a lot of smaller attempts to help mentally ill. There is no big comprehensive movement to do so. Can you or somebody you know, start the movement and get millions of us parents to join you? We are a huge population that want to do something but don’t know what to do and where to turn.
When we think of individuals with severe mental illnesses, we tend to picture someone who is homeless and severely ill.
Okay, let’s look deeper.
Here is where the really difficult questions come into play.
What if that individual is homeless because of PTSD, which does not fit into the three SMI definitions? Should NAMI ignore the 20 veterans who kill themselves each day? Should we reject them because there are veterans groups available that could/should be helping them? Do we say the homeless are not our problem because there are groups fighting to end homelessness? Do we say a person who is self-medicating because they have a mental illness needs to get clean through Alcoholic Anonymous or Narcotics Anonymous before they can enter the NAMI tent?
Some say that Mental Health America is the organization that addresses all mental illnesses. This is why NAMI should only focus on SMIs. That viewpoint discounts the powerful impact of the Treatment Advocacy Center that, I would argue, focuses exclusively on SMIs.
When I first heard SAMHSA being mocked at a Capitol Hill hearing because it sponsored anti-bullying programs, I was quick to join in condemning that agency. What does bullying have to do with serious mental illnesses? Now I question my reaction. What do we say to the 14-year old girl who becomes a cutter and suicidal because of depression brought on by being bullied? When does her mental condition reach the NAMI-should-care level? Do we wait for her first suicide attempt? Her second? Do we tell her that trauma does not fit within NAMI core issues because we serve only those with illnesses that we consider genetically based and the most severe? Where does the husband whose wife has borderline personality disorder go for help? What about more routine diagnoses such as OCD, panic disorder, generalized anxiety – all of which can be crippling?
I understand that NAMI can spread itself too thin if it attempts to represent the nearly 300 mental disorders listed in the DSM-5. There must be priorities in every organization. But where do we draw our exclusionary line? As the largest, grassroots mental health non-profit organization in America, shouldn’t we want to be that first phone call when someone is having a mental crisis?
The question remains: where should NAMI focus?
The answer: SMIs should always be our core constituency. But I believe we can move forward on a path that remains focused on serious mental illnesses while also helping others before they reach Stage Four. My son and I were turned away from an INOVA Fairfax emergency room because he didn’t pose an “imminent danger.’ I was told he was not yet sick enough. I would never want NAMI to follow that same rationale.
What Do I Want NAMI To Do?
Everything.
I want better access to psychiatrists, therapists and better medications and holistic approaches. No one should have to wait 72 weeks between being diagnosed to actually getting treatment. I want recognition that treatment requires more than simply sticking a pill into someone’s mouth and shoving them out the door. I want decent and affordable housing. I want job sharing for those who can work. I want clubhouses and peer support so people do not feel isolated. I want decent, compassionate places for those who are so sick they are incapable of caring for themselves. I want individuals whose only real crime is being sick diverted from our jails and prisons. And that’s just what’s on the top of my list.
Some will argue there is not enough money for all of these services. Money has to be taken away from one group to support another. I disagree. Money comes from power and power comes from many voices demanding political action.
Most of all, what I want from NAMI, is hope. Oh God, give me hope. I want to believe that what we do in NAMI is moving us forward, that we are making a difference and are improving the lives of those who come to us for help. I expect NAMI to give me all of that and more.
I have spent time speaking to NAMI Executive Director Mary Giliberti and a story that I posted a few weeks ago speaks about her leadership. In 2009, there was an argument about what cover to put on the Grading the States report. Some argued that the face of recovery should be on that grim study. Although Giliberti was not director, she argued in favor of a photograph of a homeless woman. When Giliberti was hired to become director, she had that photograph hung directly outside her office inside NAMI’s headquarters. She did that to remind herself and everyone who came to see her where NAMI’s focus should be. At the same time, she has worked diligently to find new ways to make us more powerful so we can help more people. To me, she sets a good example.
I am not endorsing any candidates seeking election to the five open board seats. The truth is that I am in favor of specific candidates who hold differing points of view. This is because I know them personally and respect their opinions even though they are at odds with each other and may not be the same as mine. I know that some of my most faithful readers will strongly disagree with this post. But I have always attempted to write honestly about my opinions and I appreciate you reading them, even when you don’t agree.
Votes should be cast in each affiliate after every NAMI member carefully considers each candidate’s beliefs. Do your homework. Listen to the different points of view. Think for yourself. All of the candidates deserve your consideration.
After the votes are tallied, my hope is that every board member will walk into one tent. It may be filled with many voices. That’s fine. All need to be heard. But it still should be one tent, our tent.
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