April 24, 2006

Fun With Families

As I mentioned yesterday, I got booted from a panel for AFSP/AAS's national conference here in Seattle this coming weekend. I was to be the moderator and as I usually do when asked to moderate, I emailed the participants a week out and asked what we ought to talk about. What I ran into was an eye-opener and the worst case of identity politics I've ever encountered in the mental health world.

I should not that all the panelists are what's called "survivors of suicide." That's a broad term that, as I understand it, covers families, friends, lovers, children and so on of people who kill themselves, as well as people who've attempted suicide and survived or been massive ideators. I fall into the attempted/ideator category. I'm not real big on the term survivor since it's part and parcel of victimology, but it's the term we've got for such things.

The first of the panelists, Thomas Joiner, wanted to read from his book. I thought that a bit odd since he'd be selling the book outside afterwards, but whatever. All the others wanted to spend the hour we had detailing their stories of survival. I asked if we might not want to discuss suicide in its broader context in American society since we are all trying to change that dynamic in this culture. I asked, too, if we shouldn't also discuss suicidality and patients who grapple with that reality every day.

NO, came back the answer. What's more, I was told by one of the panelists that I wasn't even a survivor myself. Apparently my own 17 years of fighting mental illness and going to the brink of suicide and somehow managing to get on with my life--sounds like survivordom to me--are nothing to them because my pain isn't their pain. My own thought is that maybe I am exactly who they should be listening to--hell, at least letting me ask them some questions--since it's generally a good idea in life to look for answer to people who are successful in whatever endeavor you might wish to know about. Why is this any different?

That's when shit got a bit nasty and I pointed out to the group that I sure as hell was a survivor and that I was very sick of the mental health movement, such as it is, being dominated by the parents and families of mentally ill people and suicides. As I told them, the rights and needs of patients get trampled on in that dynamic. And the family-led groups like the very powerful NAMI National are essentially wholly-owned subsidiaries of pharma companies. And, when the families get charged up and go talk to legislators and policy makers, it's always about how can we get more patients taking more meds. That's what their grief and anguish gets them--more meds that aren't working so swell jammed down the throats of more patients who end up becoming more screwed up. I am not overstating the case either. I have watched this "we are upset parents, listen to our pain, follow our lead, if only my child had stayed on their meds" prattle no in three states and watched it first hand in a couple of different legislatures.

There's only one problem: NAMI and all the families have been pounding on the "take meds, make meds accessible, end the shame" pulpit for 15 years or so now--and it hasn't worked. By any measure, the status of the mentally ill in this culture and, more importantly, the kind of productive results they have a right to as patients have not improved a bit. And that's by just about any index you care to use--suicide, unemployment, misery and so on.

Their methods are not working--and I am damn sorry to have to say that. I'm glad that families care. I am sorry they hurt. But if they think the answer to the riddle of mental illness in American culture is to get on stage with their grief--um, since when did anyone not know that suicide and mental illness suck?--and jam yet another generation of Americans full of psychotropics that beat their minds, bodies, spirits and souls to the ground without solving mental illness itself, then they are delusional. We've been doing it this way for years. And we are getting nowhere.

Does everyone just want to cry--or do they actually want to do something? Besides, there is so much pain to go around, why are we competing with one another on that score?

It's time someone said this shit, and I'll say more about the whole families thing now that I have finally opened my mouth. This weekend, I found out what the price of saying it is. And I am fine with that.

Posted by Philip Dawdy at April 24, 2006 01:01 AM
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I am sorry for the world. I have been in ALL of the shoes. In the Prozac world of ideations and screaming in the rain on top of a car. I am a Mother. 3 kids, 2 tried to kill themselves, we ALL survive. Survive, not even survived, shit it is day to day ,hour by hour. As one of my kids, I write about here suffers in the darkest pit of mental health possible, ..let me tell everyone what I have been told:
1.Come see her when you look like youve been on vacation.
2.You visit too much.
3.If you know so much about psychiatry, then become a psychiatrist or stay out of it.
4.See her everyday, the ones who get most visitors get well faster.
5.Take care of yourself, go get your nails done.
6.Can you drive home (since youre sobbing so bad)
7.Take her to an ER , you can't take care of her.
8.Do you see a therapist?
9.Who told her to go off meds, you or a Professional?
10. (the worst one of all)"you are a Mother who stops treatment."
Now with that list, which is the most minor of all, Ive been told to go away, "deal with that mother"...bleh bleh bleh.
We all survive all fucking day long. I'm sorry. I want to go to an event, like you described and find real answers, from real people, with real feelings who really live. Every single day I talk to my oldest daughter through rapid cycling suicidal ideations, and she is ON meds. My youngest has always been ON meds. (until a psych took her off)Every comment I listed, have come from Professionals. The ones we pay, and entrust our souls and loved ones souls to "help." When my youngest was home for a very short time, I took her to her psych and he yelled at her not to touch anything in his office, as well as telling me that I was crazy for wanting her home, and what day shall I be taking her to the ER? He didnt want to see her sick. Now WTF. So I take her to the ER at the UW and the social worker with "Fifteeen years of experience." (with her head up her ass)Told me I was an interfering mother. WHAT? OK so I rode in the back of a police car looking for her, gave her meds that could kill her or cause her symtoms, and never stopped stomping doors down for help for her, and this woman, looked down the nose at me and told me that I stop treatment, as I stood in the ER, asking for help, how can that make any sense at all. As I cried today, when I saw my daughter with no change, I commend the staff at the county facility who as a group took me, one gave me kleenex, one said, can you drive home? one brought me water, and one held her hands out without speaking. She said nothing. She held her hands out, open palmed for me to hold. There are people in this world that get it. We are just needing to become our own panel.
Philip, what a sorry bunch of idiots to lose your input. God, you are so above them, they don't even know it.

Posted by: Stephany at April 24, 2006 06:40 PM

I always have one more thing to say. I have been in a loop with the Top Gun docs, 4 hospitals and a lovely assortment of Professionals connected to all of that crap. Not one of them said anything profound, that I already didnt know, or most importantly, no one told me "It is OK." Philip has told me "it will get better" etc and Philip, you must know, with the many people I have had to deal with, over the last (12 months)your words have been the kindest, and what I needed to hear. Shit, to survive a daily stuggle, for anyone, is easier than being dead, and worth asking the person, and learning, how?? How do you do that? I cannot believe that a so called survivor, a family member of a loved one who is dead, did not entertain death themselves as a way of coping. Liars they are if they dont speak the truth. Life is light and life is dark.The ones that fight the darkness are the heroes. There needs to be a panel that is called "Why I live". What makes us take the safe way home, on the nights we want to go off the road? what stops us from the end? Why did my neighbor shoot himself at the post office and why havent I?
Any panel not willing to hear that kind of discussion are not worth the time.
I am tired of so many topics being under the big ass rug. Fear drives human beings. Once fear, acknowledged as an energy, and used in a positive way, things can and will be changed.Silence is not golden is it.

Posted by: Stephany at April 24, 2006 07:31 PM

One more comment. It is one thing to wake up everyday and make an effort to end the day alive, and it is another to "walk" or "light a candle" for those we lost.
That is it.Two very different levels here. The ones who grieve, and have lost, know nothing about how hard it is to stay alive, and the ones who have stayed alive, need to be celebrated while they live.Celebrate while we live. I would rather have someone walk for me, for my kids while we live, to show concern, for instance, now, if my daughter died...this sounds like shit but here goes...I wouldnt want any one of the fake sobbers at her funeral. Show you care when we struggle damn it.
When were dead, we wont know.
I have no idea if my words make sense to anyone else, I hope I can be clear some how, chronic is the word, who doesnt applaud that chronically ill cancer patient for sticking to it no matter how bad they puked or when their hair fell out? when someone tells me at the end of the day they didnt kill themselves....daily mountains to climb. To survive suicidal thoughts. To that I say BRAVO.

Posted by: Stephany at April 24, 2006 07:59 PM

Well I am going to Olympia. Not about meds. Mental health parity/equality. If someone ever went to Legislator here, enlighten me on what they got accomplished, so I can know what they didnt finish.

Posted by: Stephany at April 24, 2006 09:54 PM

"That's when shit got a bit nasty and I pointed out to the group that I sure as hell was a survivor and that I was very sick of the mental health movement, such as it is, being dominated by the parents and families of mentally ill people and suicides. As I told them, the rights and needs of patients get trampled on in that dynamic. And the family-led groups like the very powerful NAMI National are essentially wholly-owned subsidiaries of pharma companies.."

Now, tell me why I should go to NAMI.

Posted by: Stephany at May 15, 2006 06:04 PM

"nd the family-led groups like the very powerful NAMI National are essentially wholly-owned subsidiaries of pharma companies. And, when the families get charged up and go talk to legislators and policy makers, it's always about how can we get more patients taking more meds. That's what their grief and anguish gets them--more meds that aren't working so swell jammed down the throats of more patients who end up becoming more screwed up."

Well said. I really couldn't have put it better myself.

"f they think the answer to the riddle of mental illness in American culture is to get on stage with their grief" I couldn't help but briefly think of Cindy Sheehan here even though she has nothing to do with mental illness. (debatable by some people)

Posted by: Marissa Miller at January 13, 2007 06:24 PM

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