NAMI and Me
Every soul has to learn the whole lesson for itself. It must go over the whole ground. What it does not see, what it does not live, it will not know. (Ralph Waldo Emerson)
For years, I have spoken with passion and rebelled against the purported medical “incontrovertible truths” that mental illness is the result of a broken brain, non-contextual, and manageable but not curable with an array of psychiatric drugs (with little discussion of the potential life-long adverse effects on body and mind). NAMI, as a national organization, has held fast to its uncritical support of psychiatric drugs, while being rewarded with major financial support from Big Pharma. NAMI has reflected the polar opposite of my beliefs, promoting policies I have railed against, most particularly in their denial of hope and change. I write now about both of these – to passionately re-state my absolute belief in hope, and to acknowledge humbly the change I have witnessed in myself –towards many things, including my stance towards the families that make up NAMI. But I do remain strongly opposed to policies that lobby for easing forced treatment requirements and more hospital beds instead of less restrictive interventions.
The shame of it is that this massive organization may be the only one that offers solidarity and community for families. When one becomes a member of NAMI, a family can find a common bond with other families that have loved ones whose distress has been inexplicable and beyond the help they have sought from experts. Many find solace in not being alone and isolated. They are taught that no one is at fault because their offspring suffer from a biologically-based illness. The NAMI literature advises families to regard treatment and outcome as similar to how one deals with diabetes. Also conveyed is the explicit message that since it is a disease, there is no stigma attached to it and that members can join an important mission of NAMI – to fight stigma. Paradoxically, research and common sense experience have demonstrated that stigma is not eradicated by adhering to an illness model. A much greater impact accrues from strategies that combat stigma by making it easier for people – all people – to be integrated into communities where there is safe affordable housing and employment with a livable wage.
So what propelled me to speak to a NAMI meeting? I believe that after decades of activism, the passion and anger that drove me has changed. I believe the anger is gone and the passion that remains is imbued with greater compassion towards the people who seek understanding and community that local NAMI groups offer. I have become more open, more aware of complexity and I have a greater recognition of how much I don’t know. When I looked around that meeting room, I was acutely aware of how much pain and suffering those who were there had experienced and how those emotions still remain close to the surface. Clearly, the mental health services they had sought had failed them and NAMI was the default organization that gave them support and sustenance. NAMI’s positions were reassuring and also instilled the belief that promoting the work of NAMI was a contribution they could make and be proud of.
Last week when I spoke at the Boulder County Annual NAMI meeting I described the Hearing Voices movement and other alternatives that were emerging that were showing positive research outcomes. I said that I was encouraged by the budding recognition by state and federal funders of the benefits of employing peers who were experts by virtue of their lived experience. I saw eyes opening in curiosity and I would like to believe hope. I was surprised. There is so much more that we know is now available which supports the individual road to recovery and infinite possibilities of yet untapped potentials.
People in all their diversity must be valued and raised up above the rigidity of dogma and old paradisms. We have only begun to explore what is possible for the mind and soul when working in synchronicity. May we all remain open and Never Give Up!