May 10, 2008

The New York Times On "Mad Pride"

There's an interesting piece in today's New York Times discussing how some writers with serious mental illnesses--bipolar disorder and schizophrenia, according to the paper--have taken their writing online. That's of course nothing new to readers of this site which has been tackling the issues around mental illness for three years (and I was tackling them before that in a certain newspaper as well).

The article includes photos of Liz Spikol and mentions Elyn Saks (USC law professor who's diagnosed with schizophrenia), MindFreedom's David Oaks, The Icarus Project's Sascha Scatter, and The Freedom Center. It includes quotes from Charles Barber, author of Comfortably Numb. It also includes Fuller Torrey's assessment of the phenomenon of people with alleged serious mental illnesses writing on the 'Net.

"While psychiatrists generally support the mad pride movement’s desire to speak openly, some have cautioned that a 'pro choice' attitude toward medicine can have dire consequences.

"'Would you be pro-choice with someone who has another brain disease, Alzheimer’s, who wants to walk outside in the snow without their shoes and socks?' said Dr. E. Fuller Torrey, executive director of the Stanley Medical Research Institute in Chevy Chase, Md.

"Dr. Torrey, a research psychiatrist who specializes in schizophrenia and manic depression, said he understood the roots of the movement. 'I suspect that not an insignificant number of people involved have had very lousy care and are still reacting to having been involuntarily treated,' he said."

Always interesting to hear the views of the dark prince of forced medication. Why the author, Gabrielle Glaser, chose to sound out Torrey on this phenomenon is beyond me. The guy is as relevant to a discussion of how patients lead their lives as are testicles to a heifer. And, from what I know, very few of the people mentioned in the article write about their experiences in response to having been involuntarily treated. Lousy care, though, is a great motivator and unites many of us who write about these issues.

Anyway, it's a decent article and it's nice to see some good people get some well-deserved attention.

Too bad the reporter in question decided to overlook this wee website. It's kind of hard to understand why, given (insert apology for self promotion here) that this site has about three times the number of unique readers each month as does Icarus (the "reporter" pegs Icarus's monthly uniques at 5,000. This site's uniques currently run between 13,000 and 15,500 a month, depending on the time of month, time of year, etc.) and given that this site has been kind of aggressive in taking on the issues around mental illness that float around our culture. What's more, it was this site that got the Times's back during the whole Zyprexa documents saga last year, and it's been this site that has been--um, what's the word?--"helpful" to a few journalists who write about mental health issues. In this regard, the oversight feels like a slap in the face, or is proof that a certain reporter at the Times is rather incomplete in her reporting.

Posted by Philip Dawdy at May 10, 2008 11:31 AM
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Comments

Maybe it's just me, but I have a hard time with the term "mad pride".

I laughed out loud at your analogy of "useful as testicles on a heifer". That's a good one. :-)

I'd be a little miffed, too, at the lack of acknowledgment of your blog. Don't worry... we know you're here. :-)

Warm regards,
Michelle aka The Beartwinsmom

Posted by: Michelle (The Beartwinsmom) at May 10, 2008 12:48 PM

Fuller Torrey has managed to brainwash this country with his so-called expert advice. The guy called himself "delusional" so many times when I heard him speak in person I agreed. He was all over the map speaking, and honed in on the virus that he says "we all have been exposed to, therefore could all be SZ or Bipolar, it just depends on who the virus "wakes up in"; speaking about his own sister. The guy collects brains and was in court for gaining them illegally. Let's just keep on trusting this old man's verbal vomit.

Of course he will blame the exact thing he promotes as reason we all BLOG for Christ's sake!

Torrey is not a leading expert in Schizophrenia, he is a leading advocate for involuntary hospitalization and forced medication out patient treatment. Stanley Foundation is working on a Haldol disk that can be implanted under the skin --and Torrey called Haldol and anti-viral medication when I heard him speak, and when I asked him if he could tell me why it was anti viral he said, "No." But he believes in the anti viral properties of it to treat the virus that creates in his mind Schizophrenia. Does anyone wonder where the Haldol disk will end up being used? Forced out patient treatment plans/hospitals/prisons. Why? Because this man is the "leading expert in the field" so everyone listens to him without questioning why they are.

The reporter should have done a little more web surfing. That's not hard to do.

There's a news feed site(wikio) that has my blog ranked at # 55 of the Top 100 "of the most influential blogs in the blogosphere". If we all have so much to say, apparently there must be something wrong with the mental health system in America and maybe that should be considered before a comment such as Fuller Torrey's.

Posted by: Stephany at May 10, 2008 12:59 PM

A side note: Bipolar Blast is ranked #41, my blog is #55 and Liz Spikol's is #58 on Wikio.

Too bad the reporter missed many blogs for the article, but the reporter went for the mainstream obvious, no homework done article.

Posted by: Stephany at May 10, 2008 01:11 PM

Oh my god, where to begin? The inclusion of Fuller Torrey in a piece about Mad Pride is a faux pas of such magnitude there's nothing to do but headdesk.

Her failure to mention FS is flummoxing, your numbers are right there on technorati, did she not do a simple, five minute comparison? Gack.

But I can think of no greater crime in a cultural study than ignoring historical context. Mad Pride was founded by Pete Shaughnessy, a huge, inyerface personality with links to the English punk rock/ DIY scene, the roots of which were in the confessional poetry made famous by Sexton, Bukowski and Lowell. This is such a rich and rewarding study, it breaks my heart to see Mad Pride represented as an Internet phenomenon, a lot of crazy pioneers went out on a limb with the comix/spoken word/lecture circuit scene before the *strength in numbers* afforded by the digital age, where people sit alone in a room typing bravely on a keyboard.

Posted by: flawedplan at May 10, 2008 01:24 PM

geez i didn't even know about wikio. yet another feed site to register for!

Posted by: Philip Dawdy at May 10, 2008 01:24 PM

Sorry about the link fail:

http://www.mentalmagazine.co.uk/pete_shaughnessy.htm

Posted by: flawedplan at May 10, 2008 01:38 PM

i didnt know about wikio either until they contacted me telling me my site kept coming up in searches. it's an interesting thing when one google's 'soulful sepulcher'!

Posted by: Stephany at May 10, 2008 01:56 PM

I agree that "Mad Pride" sounds a little strange.
And guess what?
In Orkut - the social networking most used by Brazilians - some people are using Mindfreedom as an "anti-psychiatrist movement" and "Mad Pride" is being totally misunderstood.
:(
God! It's hard!

flawedplan,

I can imagine how hard it must be to see it as an internet phenomenon.

Philip,

If my opinion is of any value I have already searched on Icarus and didn't stay there.
I first heard about your blog on an article and I'm here since the first day I found it.
You really do a great job.


Posted by: Ana at May 10, 2008 02:23 PM

I hope that when Torrey retires his family does the compassionate thing & loads him up on a shitload of antipsychotics.

Posted by: Lisa at May 10, 2008 02:46 PM

thanks all. like robin, i am kinda flummoxed over the juxtaposition of torrey and mad pride. the writer--a freelancer, not a staffer, as i now know--sure as hell wasn't real smart lending any credence to torrey's views on this matter. she should';ve contacted psychcentral who is in a much better position to assess these things, especially as they relate to the net.

so you all know, i almost never use the term mad pride. why? a) i don't feel mad personally (just furious!) and b) because it strikes me as a term from the 60s trying to glom onto all the other 'pride' movements in america and elsewhere at that time and i dunno it just doesn't ring as true to me, but c) i do like the tongue in check nature of the term.

and thanks for the kind thoughts ana.

for the record, i like both liz spikol and icarus and have promoted their works on this site.

Posted by: Philip Dawdy at May 10, 2008 02:47 PM

I've just found from where I discovered furiousseasons

http://wweek.com/editorial/3421/10752/

I didn't even notice it was you, Philip, who was the author of the article.
When I saw your description at the end and the link to the blog I've clicked.
It's strange because I don't have the habit to visit blogs.

BTW: I'm the Brazilian man "Joao Assis Brasil" that made two comments. :)

I can assure you that I don't have multiple personalities but I don't like to say my name, which of course is not ANA either, and it's good to write as a man on this subject because it gives more credibility.

Please all women that are here!
Try to understand that a Brazilian has not a chance to be heard.
If it's a women it's much harder.
Forgive me.

Posted by: Ana at May 10, 2008 03:06 PM

The article is in the fashion and style section of the NYT which strikes me as odd. I like Liz Spikol but I can't imagine a world in which she's a "MadPride" type, and Torrey, well it's bizarre but the cool thing is the article implies that he is speaking against forced treatment which I bet will have him groping in the cat litter searching for viruses;), but it's cool that they gave David Oaks more space than Torrey, and it's outrageous that your blog isn't mentioned.

Posted by: Sally at May 11, 2008 06:17 AM

I wish the journalist would have written about Active Minds-a student run organization that has grown in the past five years to be on 135 campuses nationwide--that's a real movement, and it's a youth movement. I also don't relate to mad pride. Not to the mad part. Not to the pride part. I'm proud to have kicked depression and bp over and over again--I'm not ashamed to have it but I'm not proud to have it either. If I were gay I would be proud to be gay--it's a beautiful thing. If I were black, I'd also be proud. But I'm never going to be proud to suffer with mental illness. And I ALSO disagreed with the superpower thing--I was depressed for three weeks this winter and couldn't do much more than make brown rice and take naps with my cat. Nothing superhuman about it, sorry.

Posted by: lizzie simon at May 11, 2008 08:32 AM

I think the article has all sorts of insidious undercurrents myself. Like I don't think the author is really glorifying Liz or even Saks -- in fact I think she's almost denigrating them, especially Liz. I mean she sure is harping on the way Liz likes to revel in some of the more off putting aspects of her treatment -- incontinence from ECT and drooling from meds -- please -- is this being respectful to Liz -- are these the things that we remember about Liz when we read her blog? Ach -- no. I wonder if Liz is angry about this. I think I would be. And David Oaks -- well to me she's kind of making fun of how he is controlling his purported madness as if it's naive. She quotes Torrey because he's of the school that thinks "mad pride" is bloody dangerous and maybe Gabrielle Glaser does too. All in all I do not think leaving Philip out of this article had anything to do with a deliberate slight. I don't think he fits with this group at all. He doesn't enthusiastically embrace his label and his treatment like Liz and Elyn Saks; he doesn't go around saying he has dangerous "gifts" that need to be harnessed but not through meds like Icarus. He doesn't really come across as "kooky" about mental health/illness like the rest of this group probably does to mainstream thinkers. (But don't get me wrong -- I don't think the group is really kooky -- I have enormous respect for David Oaks and even Liz and maybe Elyn.) I know Philip would like to be featured in an article in the NYTimes but I don't think this is the one where he belongs.

Flawed Plan -- that was really interesting about Shaugnessy. Thanks for the link.

Posted by: Sara at May 11, 2008 12:52 PM

I wish the poor (probably pellagrin) sister of Torrey could try Niacin, Vitamin C and zinc for a year or so. The fifty-year cover-up of simple, natural, harmless and cheap nutritional protocols for mental health must end. Follow the money!

Posted by: Lilly NC at May 11, 2008 09:51 PM

i relate strongly to mad pride. and i wish i could be more elequent a writer on the subject because i think it is so important.
it is so important to have pride in one's self, not nessesarily in each individual sand grain of thought, feeling, or action collected over a lifetime, but in the broad solid base of self.

and i cannot have a solid base of any sort if who "i" am and what "my illness" is are as dis-integrated as dr. jeckle and mr. hyde.

i have read books, read blogs, talked to friends, sat in the current psychiatrist's office and been told i am not my illness, that the deviance of my labled malady does not define me, that i must keep my symptoms walled in one corner of my soul and walk off to face life a survivor.

this take on things feels to me so pervasivly dishonest,judjmental and wrong. it feels like selling myself out, selling myself short, buying for myself a fradulent guilt-ridden existance.

if however i widen my concept of self to include each part of myself, each part of myself "(mad" or not) valid, real,and a resource to call upon (an option), if i integrate i am a whole person, a strong person, a real person, a person with pride.

mad ass pride.

Posted by: jenna at May 11, 2008 10:50 PM

I think you're onto something Sara. I've been in a bad mood about that article 2 days now, and wondered if I was being cynical or jealous or whatnot. But you nailed it.The column pretends to support what it's actually discrediting just as you describe. The whole thing is to mock us and for that it deserves our umbrage.

Posted by: flawedplan at May 12, 2008 02:08 AM

I think the article is mocking, and the photo depicting Liz peering through those slats under a heading of Mad Pride just takes away from the entire story; it actually buys into America's preconceived mainstream media attempts at making anyone with a psych label appear "crazy". Think about how many people read a Sunday magazine feature and leave that as their source of "understanding mental illness". I'm glad this blog wasn't featured this way, and agree it needs to be highlighted, but not in an article like that. The photo of Liz in my opinion (peering thru the slats)took away more dignity and she's been through a hella lot to have that happen. Maybe she feels differently, I'm just speaking from my own personal opinion.

I would like to see a blogger convention of sort gathered with some of these excellent blog authors, Philip, Liz, the outspoken doctors, etc. and a panel discussion with an audience would take it far more seriously without Mad Pride or bad photos promoting it. This is serious stuff. I appreciate the efforts of any group attempting to remove stigma and bring awareness to what they believe in, but in this case I wouldn't want to be attached to that.

Posted by: Stephany at May 12, 2008 09:17 AM

Stephany,
You are right.
Not only the media covers it in the worst way but after reading some discussions I'm appalled by the lack of unity of people who should be together fighting the same war.
Psychiatry has on it's side not only all the power it has achieved in the last 4 decades by renaming diseases and being helped by all the ways we know.
It has on it's side the label "anti-psychiatry" that is used to all initiatives that put in jeopardy it's kingdom.
I believe that some people are still not aware of the damage that this division is doing.
I've seen fruitless discussions that leads nowhere and only make more confusion than enlightenment.
The post that has more number of comments has some examples of the issues that are being discussed that creates more and more divisions.
I would like you to tell me if the discussion about the origin of mental illness - social, biological, genetical - can be accurate and is of great help as basis to construct a powerful agenda to fight the psychiatric overdose.
I would like to know why people get angry at each other even though they agree.
Honestly I'm don't see how it's possible to unite people when there are so many different ways and views on issues that are not of great importance and only promote the change of focus on the real questions that should be considerated in order to concentrate efforts of every person that is related to the problems of psychiatry.
I'm sure I'll hear the "-You're are a anti-psychiatrist - scientologist. (shut up)" for a long time.
Even on psychiatrists advocators Blogs and sites on the Web the mockery is not only related to Mad Pride.
It's to all of those who are writing any line, saying any word, asking any question about any harm of a psychiatrist treatment.
Psychiatry as it is right now will be around for a long time.
Unfortunately infuriated people does not have the ability to unite efforts and even cast stones on each other.
What a pity!

Posted by: Ana at May 12, 2008 12:24 PM

I forgot that we are on thin ice.
When I said that it's useless the discussion about the origin of mental illness I don't mean that the biological theory is right.
All I know is that till the present nobody can say for sure the origin of any emotional, mental or whatever name people want to use, problems.
At least I didn't receive the memo till now.
I've learned a good lesson today: silence is golden.
I will keep on writing my book, it seems it has no end for everyday I find more and more data, and that's all.
Philip,
Your work is precious. Thank you for dedicating your career, your life all your efforts to this cause.
Because of people like you we find strength and motivation to keep working.

Posted by: Ana at May 12, 2008 12:53 PM

on a side note, i just wanted to say that although the topic is what it is; i am happy for Liz and the others who did land in the NYTimes. after reading Spikol's post about it, it reminded me she is just like me and everyone else, (who would be)beyond excited to be in the TIMES at all, if ever and how her mom and friends were so excited to see this(in print). with that i must say, congratulations to her.

Posted by: Stephany at May 12, 2008 07:56 PM

I agree, Stephany -- it's a huge thing to be featured in the NYTimes with pictures and all and be a lead article in the Styles section. I am sure she's over the moon about it. Her YouTube videos got her there in my opinion. They are too funny and ironic for words. I think I've said it before -- she could have a future as a stand-up comedian. I hope if opportunities come her way as a result of all this she will be able to take advantage.

Posted by: Sara at May 12, 2008 08:24 PM

I'm in agreement with Sara and flawedplan...the article has irked me too but I was unable to articulate exactly why. Although I had no problem articulating thoughts about Torrey's presence in the piece---it's downright insulting to have him speak for survivors of any stripe.

Posted by: Gianna at May 13, 2008 07:56 AM

I did my post on it yesterday, took all day long! This is getting a lot of coverage, I've met 2 new cool bloggers and even Feministing gave it their upbeat GEN X seal of approval.

Yes, congratulations for sure go out to Liz, Scatter, David Oaks, people we've been reading for years wishing the rest of the world would get hip to their jazz.

Posted by: flawedplan at May 13, 2008 10:07 AM

Hey flawedplan, thanks for quoting me in your great post. Always glad to be considered insightful! It's going to be interesting to see exactly what fall out -- good and bad -- there is from Glaser's article.

Posted by: Sara at May 13, 2008 12:14 PM

hey robin that is a great post you wrote, good work.

(i still stand by my comment that if i was in the nytimes or any newspaper i would not want to be shown peering thru slats and being equated with a true photo visual of "crazy paranoid" that still bugs the hell outta me,and i would decline a news story just for that!)

Posted by: Stephany at May 13, 2008 03:34 PM
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