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NAMI doesn’t Speak for US

NAMI doesn’t Speak for US

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Tired of politics? So am I! This is why I decided to get away from politics and go to Mental Health. Big mistake! Politics are as alive and rife in Mental Health as the presidential campaign of 2020. 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 and government-sponsored program, is a giant step forward since the days at Willow-brook. In the 1970s, 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 the 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? There has been a caesura, a split, in motivation and ethical stances within the reform movement. More specifically, within the activism at its root. I have experienced this firsthand 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 more in-depth.

To be as transparent and candid as possible, let’s look at the peer movement history. 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 1980s. 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.

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 being heard after all these years and betrayal. 

At the very moment, the U.S public accepted mental health as a reasonable 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.” People with mental illness are relegated to various shared assumptions, the beginnings, if understood in today’s terms, as a stigma.

I am not suggesting that NAMI betrayed people carrying a diagnosis. The organization crossed 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 1980s & ’90s as the peer evolved into a professional, and today we have national accreditation as peer professionals. However, back then, as peer networks developed, different theories became 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 (NAMI) people, the very people whom green-lighted Forced Treatment, real authentic supporters, advocates, and mental health consumers? 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 significant 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 the supporters? 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 public in its 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 that employ peers today, are simply supports for family members of people with mental illness. 

The justification, as stated by NAMI & OMH, is precisely 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…

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

NAMI never has spoken for me and will probably never be the consumer’s voice unless they change their Forced Treatment stance. NAMI is undoubtedly not the ex-patients voice or the psychiatric survivor, who was stabbed in the back by these organizations who take responsibility and justify programs like Forced Treatment and others that push compliance over adherence. 

As a person who has been forced into treatment, I can tell you that all mental hygiene laws trump the peer’s voice every time! Until the money and funding are dislodged from the systems of care that employ peers. Hierarchical machinery will continue to supplant mutual support with a negotiated voice and push medication and hospitalization over patient objection. The very same agent that sold out its people out too early before the civil rights movement could forever change the face of mental health treatment in the United States.

About the Author

J. Peters

Bold 10 Under 10 award recipient Jacques Peters ’08, MSW ’12 . Through his work as a Licensed Clinical Social Worker (LCSW), therapist and disability rights advocate, Mr. Peters fights for those without a voice in various systems of care, such as the New York City Department of Social Services, the New York State Office of Mental Health or the city’s Department of Corrections. Jacques is the author of University on Watch: Crisis in the Academy, which he published under the pen name J. Peters in 2019, and First Diagnosis, published in 2020. Jacques refers to his stance on recovery in his journal articles as “Too big to fail.” No obstacle too big, no feat out of reach, Jacques let nothing stop him in his path to recovery and healing.
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