“So, when I say, or hear, that NAMI doesn’t speak for us, it is because they speak for my mother, my father, my brother, but not me”

The Mental Health Awareness campaigns of modernity (e.g. Mental Health Month), commonly associated with “friendly” and person centered staff in your local non-profit agency & government sponsored program is a giant step forward since the days at Willow-brook. In the 1970’s, the state hospitals serving the mental patients of that time & long before it were deplorable.

I wasn’t born then. I wasn’t a patient at Willow-brook. In fact, the unit at Binghamton State Psychiatric Center I lived in for six months, is no longer in operation. That’s a good sign. Things are changing. But how much of what was going on, still is for some people left in psychiatric hold? Who is to blame for the systems broken aspects, discovered, but left unresolved by those running it?

The Mental Health movement was a civil rights movement, but what happened? At the root of it, there has been a caesura, a split, in motivation and ethical stances within the discourse & more specifically within the movement. I have experienced this first hand as a person with lived experience who has chosen to practice social work. On the face of it, the disconnect evolves out of a question of “person-centeredness”, “mutuality” and “authenticity“, but, the split couldn’t go deeper.

To be as transparent and candid as possible, let’s look at the history of the peer movement. In the beginning, there were no peers. These people were first ex-patients who were coming out to their employers and friends as a person who was mentally ill. The language has since changed from the 1980’s. People today may be carrying diagnoses but back then, you weren’t just institutionalized in hospital, you were institutionalized by your label and by friends in an intolerant society. At least today, the mentally ill have allies, right?

I would hazard to say this might not be the case at all. As a language expert, or at least a person that speaks English; I know there is a giant difference between the words “ally” and the type of allies found at NAMI (The National Alliance of Mental Illness). The split in the movement isn’t so much a split in ethical stances on mental health it is anger from the last generation of peers about not only not being heard after all these years, it is due to betrayal. It was at the very moment the U.S public accepted mental health as a valid cause requiring government reform that the civil rights movement died. In fact, Chamberlin (1987) suggests that “newly forming ex-patient organizations that had mixed membership was indeed destructive” because, without fail, organizational problems devolved into what was referred to as “mentalism” and “sane chauvinism” or, relating to people with mental illness with a set of common assumptions, the beginnings, if understood in today’s terms, as stigma.

I am not suggesting that NAMI betrayed people carrying a diagnosis, the organization betrayed ex-patients twenty years ago when the peer movement gained political and social traction within the community as a cause worthy of government resources and attention. If you don’t think this is the case, follow the money, and the history unfolding around the blossoming peer movement. The money poured into states for mental health services during the 1980’s & 90’s as the peer evolved into a professional, and today we have national accreditation as peer professionals. Back then, however, as peer networks developed, different theories evolved on how these organizations would be run. As Chamberlin (1987) notes: ” Groups were united by certain rules and principles” and anger towards the system as “legitimate” not a “symptom of illness”. But, despite the challenges from within, and without, the movement moved forward.

Organizations like NAMI, and many other groups that exist “claim to speak “for” patients, that is, to be patients’ advocates” but are they the voice of people carrying a mental illness? Is NAMI , the National Alliance for the Mentally Ill (NAMl) people, the very people whom green-lighted Forced Treatment, real authentic supporters, advocates, of consumers of mental health? On the NAMI website, the organization puts out writing as clear as day, suggesting in their own publication that: “Now we know more….We would argue politely or harshly, that the evidence was they were ill and needed treatment. But we never win on the strength of our argument. We win on the strength of our relationship”. So, according to NAMI, it is their relationship with people with mental illness that licenses them to speak and advocate for people carrying a diagnosis. In simpler terms, peers, ex-patients, and consumers of mental health services alike should accept that evidence on forced treatment proves people with a mental illness will get better. The theory, that people need treatment, and will, under the auspices of organizations that protect their rights, accept forced medication and hospitalization because it will be fair, respectful, and all the other great aspects of care the Office of Mental Health espouses in its mission.

If NAMI isn’t a friend or ally of the mentally ill, who are they allies with? After reading the New York State Office of Mental Health Strategic Mission, and comparing it to the NAMI literature circulated in the community, the language is very similar. In fact, NY-OMH makes it visible to the pubic in their mission when they state : “The New York State Office of Mental Health promotes the mental health and well-being of all New Yorkers…. to support children and families in their social and emotional development and early identification and treatment of serious emotional disturbances”. With this said, it wouldn’t be too much of a stretch to say NAMI, OMH, and other organizations which employ peers today, are simply supports for family members of people with mental illness. The justification, as stated by NAMI & OMH is exactly what the peer movement feared. People with mental illness can’t speak for themselves. Due to disorganized thinking, psychosis, or some other psychiatric justification for involuntary treatment, NAMI and OMH will speak for them.

And so the story goes. So, when I say, or hear, that NAMI doesn’t speak for us, it is because they speak for my mother, my father, my brother, but not me. They never have spoken for me and will probably never be the voice of the consumer unless they change their stance on Forced Treatment.  NAMI is certainly not the voice of the ex-patient or the psychiatric survivor,  who was stabbed in the back by these organizations who take responsibility and justify Forced Treatment, or this writer with lived experience. As a person who has been forced into treatment, I can tell you all, first hand, that mental hygiene law trumps the voice of the peer every time and always will until the money and funding is dislodged from the systems of care which employ peers in a hierarchical machinery supplanting mutual support with it’s negotiated voice. The very voice that sold out its people out too early before the civil rights movement could change the face of mental health treatment in the United States forever.