Why I Took the National Alliance on Mental Illness (NAMI) off my Page

I like to put services that I think are helpful, or quotes I really like, on the side of my page. I had NAMI up as one of them. Because I’d never really needed to use them before and thought they were a useful place. Until I needed to use them. Now, they may be good at getting things done on a large level. I have no idea. I do have to note that their page does have some good resources, so I’m not throwing the baby out with the bathwater, so to speak. There are a couple of reasons I’ve taken them down I feel I need to mention, though.

1. They have launched a campaign to lower the number of people with mental illness in prison. This is a well meaning campaign, and I signed up as someone interested in following it. But things came up with another issue, 2., which made it clear that they weren’t quite thinking the whole thing through.

2. I was trying to seek advocacy for a friend with depression involved in a court case where the people involved have no understanding of mental illness, and, I feel, are mobbing her. I thought, “I’ll call NAMI. They’ll know what to do.” I was very wrong about that. They told me: “NAMI has no attorneys on staff and doesn’t have the capacity to provide advocates for individual cases.” They went on to say, “If your friend thinks she is
being discriminated against because of her mental illness, then Disability Rights Oregon might be able to help.” This was the state office of NAMI, and they said they forwarded my request to the local office, where the man here was on his honeymoon. That was on June 8th, so that’s a heck of a long honeymoon. There’s a caveat in here that I’ll explain in a minute.

3. I wrote them back, saying that if they really intend to keep people with mental illness out of prison, wouldn’t a system of legal advocates in the court system be a really good way to go, that way they’d keep people with mental illness from ever ending up in prison in the first place? Cricket. Cricket. No response. Because that’s the right way to go about it, IMHO. How are people with mental illness going to be kept out of prison if there isn’t an independent intermediary in place in the legal system to help them advocate for themselves to all the people who haven’t a clue about mental illness or how being locked in jail/prison without treatment is so damnably detrimental? Not to mention inhumane, unethical, and whatever else you care to call it. It’s a bit like shutting the gate after all the sheep are gone. Let’s wait until they’re all in the neighbor’s yard, then go get them. It’s too much work to fix the pen. What we  really need are advocates in the courts. I am very, very convinced about that, and NAMI’s non-answer was disturbing and sad.

4. I recently joined a group and found out how far-reaching NAMI’s non-involvement in personal cases goes. What the cost is in terms of lives lost. If they aren’t going to help people when they really need it, they shouldn’t call themselves the National Alliance on Mental Illness. They should call themselves a government action group and be done with it. To me, an Alliance is something that helps other when they are in need, not something that turns its back on people when they are desperate and at their wits’ end, and the cost is someone’s life, literally. And the effect that loss has on the entire family and circle of friends of that person. The demoralizing effect on other people with mental illness (and their families) as they see or hear of another person like themselves who succumbs to their mental illness because of lack of treatment, or lack of treatment facilities, or just plain lack of understanding.

5. The Office of Disabilities Rights refused to help as well, because it’s a Family Law case, and they don’t get involved in those. I don’t particularly blame them, because that would take up all of their time. I used to work for Protection & Advocacy, in California. I replaced NAMI with Protection & Advocacy, a nationwide, federally mandated organization who helps people with disabilities, and families with children with disabilities, on cases involving SSI/SSDI, Special Education law, and matters like that. I think they are an important organization, and I know they made a difference where I worked. Like every other federal agency, they are underfunded, but they do the best they can. If people have problems because schools aren’t adhering to their child’s IEP, or someone is having problems with Social Security over SSI payments, they’re the ones to go to. So even though they couldn’t help in my particular case, I still feel they are a good organization well worth putting up on my page for people who need help with those things. Because there are a lot of people who do need help with those things.

Treatment and recognition of mental illness is something that is sorely underfunded in this country. Probably many countries. Yes, there are many people with mental illness in prison, but why does no one look at why they’re there and not in treatment facilities? Why does no one question the fact that courts are woefully underprepared to deal with people with mental illness, treating them as if they are stupid and deliberately defying them? Truthfully, I believe they would rather work with drug addicts than people with mental illness–you can put addicts in treatment with timelines that fit into court schedules (I won’t go into the issue of addicts with mental illness). Mental illness doesn’t just “go away” to suit people like the Department of Human Services, or lawyers, or judges, just to make their lives easier. Mental illness isn’t “convenient.” Just because it’s an invisible disability doesn’t mean it isn’t there. The whole foray into the court system makes it worse. Adequate mental health care shouldn’t be a struggle, it should be a right.

Which is why we need independent Mental Health Care Advocates in the courts.

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