May 24, 2006

Mental Health Advocacy and Politics

When I spoke with Pete Earley last week, we both wound up lamenting the level of politics in the mental health advocacy world and that we had both brushed up against it recently. Earley told me that NMHA had refused to let its vast network know of Earley's new book Crazy because it leans too heavily on TAC. Meanwhile, TAC won't answer my questions. NAMI National stopped returning my calls months ago, mostly due to a personality dispute. A few weeks ago, I was kicked off a panel on suicide survivorship by the folks at AAS/AFSP because I had argued that psych patients who'd survived suicide attempts and suicidality were survivors of suicide. I was told that only parents of suicides are survivors.

I'm sure Earley or I could piss off DBSA, too, if we asked the wrong questions. And on what I guess you'd call the far left of the mental health world, we have the MindFreedom folks. (BTW, if anyone thinks I am being rough on TAC in recent posts, please check this wild discussion thread on Wikipedia, wherein MindFreedom people and TAC backers go to war over how to describe TAC in its Wikipedia entry.)

What's discouraging to me, and to Earley as well I think, is that we are both essentially moderates in the politics around mental illness. His view is tinged by being the father of a bipolar, who declines treatment. My view is colored by being a bipolar who's had very mixed results from meds and sacrificed his body in the process. Both of those natural biases will create tension with someone in the mental health world. But both Pete and I want this crap to work and to work for patients. The frustration we both feel is that if you don't sit there and take dictation from Group X and repeat their claims in print uncritically, then you are cut off by Group X.

There's not a particular moral or point here, but I have to say that after having observed the mental health world as a patient for 17 years, and as a reporter for the last 5 or so years, that I am not convinced that a movement that is so divided is going to get us the kind of results we need in the real world for the people who actually live with this crap. And that sucks.

Posted by Philip Dawdy at May 24, 2006 12:01 AM
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Comments

You are right.Until the ropes are lowered to reveal a common ground, this is a battle never to be won.

Posted by: Stephany at May 24, 2006 12:21 AM

Parents are not survivors. The end. They are grieving a loss of a family member. Placing this into perspective: What do we call cancer survivors? they are called survivors. Why? they beat it.They went to hell and back, and lived. The person who lives/is alive, is a survivor. I find the ownership of suicide death, by calling the "people left behind" survivors, is rediculous.They have lost a family member, but people do everyday, from many different reasons, illness, car accidents. For the panel to not appreciate,and offer to the audience, someone who has survived, and is present, alive and willing to share a very personal experience is inexpressable. That is the very insight I would want to hear. That person, is the one, that could give those grieving parents/sisters/brothers/friends some insight as to how it feels to live to the point of wanting to die, but living. Anyone who does not want that insight on a panel, truly does not want to do what they claim, is suicide prevention. If I was suicidal, and I called a hotline, I would not want to talk to a survivor of a death of a loved one, I would rather hear from a person who beat the hell outta that moment, and survived it.
The word survivor is tacked on to this, but what people need to really focus on, is why the group did not want someone who could give so much insight on their panel. Maybe they were afraid you would take away their ownership, of 'survivor'. I had a person I knew kill himself. I never thought of myself as a survivor of suicide. If the group really only concerns themselves with parents, what about friends, siblings, co workers? they grieve just as much. I also feel a panel that does not want a real suicide survivor on the panel is afraid to let go of their grief, and move on. They are not moving on, and truly helping, if they keep the doors closed to the pity party goers only. This is a prime example of why I do not use support groups. NAMI included.

Posted by: Stephany at May 24, 2006 07:56 AM

Appreciate your blog,mental health consumers are the least capable of self advocacy.-Daniel Haszard

Posted by: Daniel Haszard at May 24, 2006 11:40 AM

Daniel,
You are right. When feeling on top of things, that is the time to make sure (even if in legal documentation)the one's that "have your back" know what you want to happen if you "go south". I want you to know, that you are able to self advocate though. When you speak up, ask questions, and challenge doctors, you are self-advocating. You self-advocate when you decide what med makes you feel like shit and what makes you feel good at what dose. Take that power. You have more power than you think. Take care.

Posted by: Stephany at May 24, 2006 08:19 PM

I thought I was informed but after reading all night and clicking links (yay) see I am missing some nuance, to put it mildly. That Wiki page you recommended on TAC was very moving, this has got to be the most intensely partisan and underreported real world human rights issue in today's America, and so complex, no wonder few have the wherewithal. And the patients, who the moral authority are in a double-bind, how can an authority lack credibility? You bring credibility, I've know that much already.

But for some of us discussing the issue is re-traumatizing, people understand that to be true for victims of catastrophes, and throw them due sympathy, but she was too much on her own there, of course she's angry, people who have been tortured and abused and denied their humanity are going to have baggage. There's grounds for feminist analysis in this issue as well, as if that day would come. I don't even know if there was a question here or if I'm posting on the right thread, just spewing if that's okay.

Posted by: flawedplan at May 31, 2006 02:00 AM

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