In a previous blog about NAMI NH, I provoked many people in a way I did not intend.
There is no defense for forced treatment and confinement, outpatient commitment, the chemical brain disease theory, or Big Pharma money. NAMI supports all that, and many people are angry at them. Some people were hurt personally and lastingly by the mental health system, and give NAMI a share of the blame.
I apologize to the people I triggered. I was hurt by the system too, and some of that is a continuing source of pain in my life.
My mentor in the empowerment movement, David Hilton (click here for Part 1 of 3 of his story), blamed NAMI for all the forced medication and confinement he endured his whole adult life. He was angry all the time, but he was also brilliant. He did more than any other individual to bring a culture of recovery to New Hampshire’s mental health system.
I embraced his ideas, not his anger. It had taken me 50 years to get past my anger enough to function well, and I did not want to borrow anyone else’s.
“NAMI-hater,” the term I should not have used in my blog, was actually accurate for David. When I used it in a blog intended to stop people from bashing one another, I bashed people. Several readers scolded me for that – rightly so.
It’s tough, and an oxymoron, to criticize people for being too critical.
As Paul Cummings says, “Ask yourself if you have helped one person today, are you building something or showing a better way? Or just telling people that their way is wrong?”
Like all advocates, I sometimes get emotional, and go beyond the constructive point. It’s a very fine balance.
I was angered to see my friends hurt. They worked for free, or paid to work, all their lives to help people as best they could. They were given the same inaccurate information we were. We are all victims of dishonest storytelling.
A couple of people, in comments on my blog, asked why they don’t change, why the 80-year-olds I called “NAMI Mommies,” the founders of the organization, don’t start writing e-mails saying their story was wrong, and working the system to change it.
First, though it happens occasionally, it’s not in the nature of most 80-year-olds to deny their life’s work, and get active trying to undo it. They fought their fight with the system, for their own children and all children. The next fight is up to the children.
I had to stifle a scream when Rona Purdy, a former NAMI NH board chair and national board member, rallied the people at the NAMI NH annual meeting by reminding them of their group’s greatest achievement: convincing the medical profession, and most of the public, “that these are no-fault diseases, genetic malfunctions of the brain.”
That’s her story after her 30-year struggle with the system, and in her own family, and she’s sticking to it. I did not scream, or even argue with her, because I honor the pain she went through with great courage, and her lifelong struggle against prejudice.
As I reported in my original blog, I had private conversations with a couple of old NAMI women from that generation about my current activities and beliefs. I’m closer to these two women personally than Mrs. Purdy, whom I hardly know.
One listened with interest, and the other listened worried that vacations from meds might make her 50-something daughter sick again, like her previous unsupervised med vacations did in the past. Peggy Straw might have heard me when I said a med vacation might be OK for her daughter if she did it the right way, with the right kind of support.
About 10 years ago, NAMI’s national director (he was fired abruptly a few years later) told me NAMI’s future was as an alliance between families and consumers. But it had to be an evolutionary process because NAMI has an “old guard,” who worry that all the modern talk about trauma “will take us back to the bad old days of blaming families,” he said.
I was in the room in 1977 when my doctor and social worker blamed my parents to their faces for making me sick, and keeping me sick, by telling me I was a writer. They were undermining my treatment plan, which was to convince me I was a cab driver, not a writer, and there was nothing wrong with driving a cab. To be happy, they said, I had to accept my handicap, and let go of my writer fantasy, which they said was arrogant, manic grandiosity.
Those really were bad old days. Fortunately, my parents listened to their hearts, and what they knew about me, not to them.
At the 2006 NAMI national convention, the national board chair, Dr. Susan Vogel-Scibilia, a psychiatrist with disclosed bipolar disoorder, told a session that “in 20 years, NAMI would be a full partnership between consumers and families.” You mean I have to wait till I’m 80 to be a full partner here, I said.
But NAMI National has changed in the last 20 years. It is more receptive to trauma- and recovery-based services. I doubt it will ever change fast, or completely, enough to satisfy us.
Affiliates like NAMI NH are ahead of that curve. Except when they present a united front supporting funding for community-based services in the state Legislature, they are among the change-averse mental health centers’ sharpest critics.
I can’t convince NAMI NH to break that united front, and tell the Legislature to fund less expensive alternative interventions that make people well, instead of keeping them as life-long patients and tax consumers. They’re afraid to give our Tea Party Legislature an excuse to cut what’s there, replace it with nothing, leaving the people NAMI NH cares about, who need state services at least for now, high and dry.
In 2010, I did not support funding mental health centers as I had for 12 years, and maybe a few people noticed my absence. I might oppose funding next year, if I’m willing to do it alone, and lose all my friends in the state.
The personal cost to me is probably too high for what I’m sure would be a satisfying but futile gesture that might harm innocent people who need services. I only start fights when I think I can win, or advance the cause by losing.
Most likely, I’ll sit out the next state budget process, and advocate for alternatives a different way.
The blog triggered a long list of comments on this website. Many expressed anger at NAMI, or disagreement with me. It was all remarkably measured and polite, far more than the NAMI debate on the Alternatives Facebook page that stimulated my blog to a large extent.
When transferred to a Word document, the exchange runs 44 pages so far. It could be summarized as “NAMI sucks. No, NAMI’s not so bad. No, if you think NAMI’s not so bad, then you suck.”
We had a couple of exchanges like that on Wellness Wordworks’s “Undiagnosing Emotional Distress” FB page, until we banned them. People just repeated themselves, insulted each other, and upset other people. Insults shut down conversation when different elements in our movement need to communicate. As Jesus said, “I sit down with the tax collectors because they’re the ones who really need the message.”
Only one of the comments on this Mad in American website bothered me: someone suggested that the old NAMI mothers I mentioned by name in my blog must have traumatized their children. That’s what his (or her?) ideology says must have happened.
These women are my friends. Their children might have been traumatized, but I know their mothers didn’t do it. It upsets me when a total stranger, based on a belief system alone, with no evidence or knowledge, accuses them of child abuse. David Hilton, based on his ideology alone, accused anyone connected with NAMI of abusing him personally.
I’ve found that all ideologies have inherent limitations, because they are created by people with inherent limitations. Trying to apply an ideology to everything can lead to terrible mistakes, like the Vietnam and Iraq wars. I get particularly irked when people deny or ignore evidence that runs against their set beliefs, instead of examining their beliefs.
In polarized situations, I always jump to explain each side to the other, and try to get them to communicate. I am a Libra, born under the sign of the scales, always seeing all sides and looking for balance. But the explanation for jumping toward the radical center “is not in my stars, but in [myself],” as Cassius said to Brutus in Shakespeare’s Julius Caesar.
The current political landscape is defined by polarized issues where people can’t talk to people on the other side without hostility, much less with an effort to understand each other, even when they meet at family occasions: abortion, global warming, etc.
Both sides of these issues have ideologies, and there are some absolutists in each camp. I think absolutism is a personality type, more than a belief. I think a different way, even when an absolutist and I think the same things. I don’t agree with anybody about everything.
I don’t necessarily think we in the empowerment movement should spend a lot of time reaching out to NAMI. But we should not shut down potential allies just because they affiliate with NAMI. That’s shooting our movement in the foot.
Activism and outreach require measured anger, judiciously applied. Some people are too angry or hurt for it. Others are not angry enough. David Hilton (click for Part 2 of his story) always wondered if I was angry enough. I didn’t hate the people in NAMI and the system he called “the enemy.”
My adversaries were never my enemies. It was bad for my health, and bad for the people I was advocating for.
I was just angry enough to be assertive, not aggressive, in dealing with our adversaries, and have cordial personal relations with them outside our meetings and negotiations. I could (and did) kick it way up when the community’s essential needs, rights, and services were threatened. People noticed when I got angry because it was unusual for me.
It’s a skill I learned as a young advocate in Washington, before the government turned into a series of armed, hostile camps, trying to destroy one another.
As director of the state Office of Consumer Affairs, and chair of the state consumer advocacy council, David and I were a good team of advocates. Though he was the one with a job in the bureaucracy, he stayed outside the room feeding me ideas, while I was inside talking to “the enemy,” forming coalitions and translating David’s ideas into achievable proposals.
As for people in pain, who hold NAMI partly or completely responsible, like David Hilton, NAMI is responsible for a lot. But that anger can damage you. It helped kill my friend David (click here for Part 3 of his story).
David and I organized the NH consumer empowerment movement into a grassroots lobby that succeeded on two major issues while I was Council chair. We saved our state’s consumer-run peer support centers when the permanent bureaucracy tried to ruin them, and we changed the state guardianship law to give more legal protection to diagnosed parents who came under pressure to give up guardianship of their children.
These things happened because of grassroots consumer activity, not because of us, but it could not have happened without us.
I doubt we could have accomplished those things without support from the Good Straight Solid Respectable Citizens in NAMI NH. We did not agree about everything, but were very effective when we did agree. That’s why we should not write off all NAMI people, even if we write off NAMI.
Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.