Many Thoughts On NAMI

On Friday, I opened my big yap about NAMI--and by that I meant NAMI National, not your local, mostly-volunteer NAMI. And, um, were there ever a ton of responses. By the end, it had become one of the best comment threads in the 18 months or so that the site has been around. Here's a few responses:

"I appreciate this comment you made: "They aren't the only ones pissed at NAMI and the mental health system in this land...Many, many patients are sick and tired of being told to shut up and take their meds and go sit in the corner." I think what's so frustrating for me is that my voice doesn't count. Only patients that have something positive to say about psychiatry or psych meds are taken seriously. Any patient or former patient who questions some of the practices in psychiatry is immediately labeled as an antipsychiatry extremist or a scientologist (I'm methodist, not that it matters), or it's their mental illness acting up. It can't possibly be that maybe, just maybe our opinions have some validity, also."

And:

"Two nights ago I told a local NAMI group that if I simply thought my meds would make me better that I would be living in a cardboard box. Guess what? Members of NAMI know the system is broken, they're as frustrated as we are, they are looking for more than the standard psychiatric answers, and they are receptive to patient-driven recovery. And they are also very decent people. But to find that out, first you have to be willing to talk with them, and to hear their stories, and to be willing to walk a mile in their shoes."

Good points. NAMI National hasn't returned a call of mine in more than two years. And:

"I always talk about the major disconnect between the local DBSA/NAMI/MHA groups and the national organizations. I work with people at the local DBSA and NAMI organizations and many of them are not paid for what they do, and they do a lot. They are weary of the positions, politics and programs of the national organizations, but they also know that the programs they conduct, like NAMI's 'In Our Own Voice', Family-to-Family education, Support Groups, make a huge difference in the local communities."

And:

"Last year while trying to get ahold of my gramma's lobotomy records all the writers, academics and institutions told me to call NAMI for help. These records are sealed, destroyed and hidden, and everyone told me the NAMI folk will be sure to stand up for you. I called them, left 2 messages and when they finally called back they left the message 'We will not assist you in this matter. There is no need to return my call.' Click."

There is more, all of it pretty good.