Philip, there are two Robin Plan people? I had a thread up last week at my place about being censored at Against Medical Advice, and am wondering if you blended the two events.

Right I wrote Frontline yesterday about the fact it was not disclosed on the air that 5 year old Jessica was already on an antipsychotic when she was being diagnosed as a "classic case of bipolar". I also queried their omission of withdrawal and rebound issues. How many parents are told of the incredible difficulty of stopping such treatments once they are begun, the long tapers required and the weeks of rebound withdrawal symptoms that occur even after someone is off and the prospect of ever worsening mood disorders as a result? Then I also called them on several other points including the fact a suicide increase did not coincide with prescription decreases quite as precisely as they asserted. So far my comment has yet to appear. I doubt it will. Way too controversial but honestly I think my points really added to the debate. Plus I lost my own copy of the letter and thought it was good! None of my comments to the Judith Warner blog have ever made it on the site either. No surprise there. In fact once she closed all comments right after she must have received mine. Thanks to you Philip for letting us all speak out. I really mean that. I think it adds immeasurably to this site.

I've been censored on crazymeds.org when I told people I was withdrawing from meds. They took down the post in which I had the link to my url. They told me "I'm sorry but we are pro-med here." I wasn't telling anyone to be anti-med.

Why thank you Philip!

What a wonderful subject that you’ve addressed and are especially close to my heart as it also relates to freedom of speech.

I’ve been booted from two websites. One is run by Ms. Julie Lawrence of ECT.org and the other by Mrs. Donna Baum of VNS Message Board.

I have through training endeavored to share my opinions by way of my personal experiences, knowledge and research and where possible I’ve made efforts to also cite links to information substantiating my position while avoiding giving advice or telling anyone what to do or not to do. In doing so I also try to avoid words such as them, they, we, you, all etc when in fact I know these words used by participants to this forum too are blatantly incorrect from my own experiences, knowledge and collaborations with professionals and instead I prefer the use of the first personal singular, I.

The fact is like you have demonstrated I too endeavor to practice freedom of speech on my website whether or not one is in agreement with me as opposed to the two forums I cited. Anything which I deem inappropriate and not on subject I have a separate section which I refer to as the “Garbage Pail” so as not to delete anyone’s postings but to allow those who do have interest in rummaging through the trash to also do so.

These two sites like many sites I have visited through the years are what I refer to as “bitch and moan” forums. While there is certainly a need for those individuals to share their dismal or unfortunate experiences the reality exists that all have not shared similar negative experiences and their voices should also be properly heard. Many individuals simply take their medications or therapies and go on with their lives never to be heard on these forums. As was the case in these two instances the entourage of long-time participants to these forums do not take kindly to those who do not share similar experiences and thinking and rather than address issues these individuals level their barrages at participants such as me. The site administrators of these two forms established their sites to present what I consider their biased positions and they in turn censure views along with their entourages to suit their agendas and unjustifiably accuse others and me of attacking their members and hence excommunication.

Most interesting are the derogatory words, defamation and character assassination I’ve endured while being able to record and accumulate from these very same site administrators whose site policies are to prevent such personal attacks. Not that I miss participating in those forums but I do feel sorry for those taken in and deceived by the biased perspective of these sites and their administrators. Needless to say my website and the accumulated information was also hacked and destroyed a couple of years ago but my voice has not been silenced.

Philip, once again, thanks for bringing up the subject of “Censorship On Mental Health Websites” it is a good topic and especially worthwhile in my opinion for those in need and seeking help to understand and question what they read on the Internet. Let us also not forget the various websites that are sponsored and possibly influenced by the service providers and manufacturers of the mental health care products.

Warmly,
Herb
VNSdepression.com

http://www.chicagotribune.com/services/newspaper/printedition/thursday/chi-kickedout_27dec27,0,1793921.story
- I thought you might find this link interesting, its reporting on colleges kicking out students with mental illness to save themselves from liability.

So far, my Frontline bipolar child comment, which very politely raised some questions about some of the assumptions in the show, doesn't seems to have been posted. I read about ten pages of the comments that did get posted, and they ranged from support for heavy drugs to questions about the possibility of reducing 'symptoms' with better nutrition. It reminded me of watching foxnews, where they'll have a debate between an ultra conservative and a moderate, pretend that they're a conservative and a liberal, and thereby define the boundaries of the debate far to the right, with all the underlying assumptions not only going unquestioned, but actually being strengthened by being left unexamined. If a debate (not likely to be had on fox) is between raising taxes a huge amount, and just raising them a little, it really discourages people from questioning whether taxes should be raised at all, or whether there should even be taxes, or anything else out of the box. I'm not trying to get into a political debate here, these are just for examples.

A recent episode of 'Justice Talking' on public radio had a debate between someone from E.Torry Fuller's Treatment Advocacy center and a really unassertive civil rights lawyer. Instead of debating the merits or ethics of involuntary treatment, it soon became a debate (which I think the TAC guy won) about whether there should be greatly expanded coercive treatment. Later in that episode there was a long interview with someone who now has a successful career after being repeatedly involuntary treated, including being tied down for many hours, and now is grateful for that treatment. I say, hats off to her, she's lucky things worked out. But since the show had no rebuttal, or any real dissenting voices, it seems that most listeners would be left with the impression that the only debate is whether it is more humane to coercively treat 'the mentally ill' early, before they become dangerous, or let their diseases progress for a while first. Certainly, no one would be led to see, let alone have a healthy skepticism about, the mountain of assumptions which that debate is perched on.

I don't post to many sites anymore (being barraged by people telling me, usually in all capital letters, to 'JUST SHUT UP AND TAKE YOUR MEDS' and that I would be a murderer if my posting of skeptical views discouraged someone for 'getting the help they need', got old after a while). While I respect peoples' right to call me a murder if that's what they think, I especially like the Furious Seasons blog (long time reader, second time poster) because it includes a variety of view points in such a civil way, it almost seems possible that just maybe we might actually learn a little something from each other.

Anyway, my point is that suppression of dissenting/ minority/ unpopular views, especially in the USA, is often a lot more subtle than overt censorship like banning books or erasing posts.

I found Herb's comment particularly interesting, since it describes things from an opposite perspective, i.e. an advocate of a radical biological treatment feeling maligned on opposition sites, though I must point out that to describe people's descriptions of being brutalized by the psychiatric system as 'bitch and moan' is itself quite derogatory. I'm happy for anyone who's found improvement in their lives, however and wherever they (sorry, I mean 'those individuals') have found it, and would of course want everyone to know about all the possible options, and of corse would not excuse or defend anyone's abusive or defamatory language. But its hardly surprising that participants of the tiny minority of psych-related sited that are on the skeptical-to-anti spectrum would not take too kindly to the encroachment of the pro-biopsych view that dominates the vast, vast majority of discussion about mental health. The majority view being cenSURed (i.e. vigorously argued against) in minority-view forums seems to me to be quite qualitatively different from dissenting views being cenSORed (i.e. prevented from being shown at all) on mainstream sites. To me, it seems highly unlikely that a naive person could get the impression from reading psych-related web sites that biopsych is 100% terrible for everyone and no one ever has positive experiences, but quite likely that a persons reading the vast majority of sites would conclude that everyone believes in the mainstream view except for a few scientology cultists, when the reality is that psychiatry is great for some people, terrible for others, a mixed bag for most, and at the very least it is a highly controversial subject.

UnderTheThresher@hotmail.com

Abby, thank you for posting the link to the Tribune article. It makes me sick to my stomach, but it is good to call attention to it.

I am new to this site, but I definitely appreciate that we do not all have to agree and can recognize that everyone's experience is unique. I would not describe myself as either pro-med or anti-med, and it is nice to know I do not have to pick a side and to hear from others with mental illnesses and mental health advocates who do not feel the need to judge everyone. In the last month I have been to two conferences on mental health law issues. At one, a representative of Mental Health America talked to me about "those people who talk about these people having civil rights," so can not think of her as an advocate for me after that, and a treatment provider who made jokes about homelessness and how no EDs like to see "my patients" come in the door. So tacky!

there is no censorship on the Icarus Project discussion board or on the Muzzles off e-zine...just knowing a person is free to speak their mind without censorship is very freeing.

I don't have a problem with bloggers deleting or not printing comments for whatever reason. I think it's a right bloggers have. However, blogs that fail to post comments that reflect various positions generally fail to generate readership.

Altering a comment on the other hand should be illegal...it just ain't right, however, I suspect that if a blogger did such a think the blogosphere would respond appropriately, i.e. complaining to the host, not commenting, etc.

Hi UnderTheThresher,

“I found Herb's comment particularly interesting, since it describes things from an opposite perspective, i.e. an advocate of a radical biological treatment feeling maligned on opposition sites, though I must point out that to describe people's descriptions of being brutalized by the psychiatric system as 'bitch and moan' is itself quite derogatory.” --- UnderTheThresher

Thanks for your comments as I too appreciate your perspective. To add to your understanding I am an advocate for education and informed patients and treatment choices and not singularly “a radical biological treatment” of which I do not personally believe it to be radical. Of those choices I also advocate for doing nothing, diet and nutritional modifications and supplements, medication holidays, holistic approaches, talk therapy etc. I am for whatever the patient determines is of benefit to oneself.

I shall disagree with you that all individuals as you may perceive it are not “brutalized” by psychiatry and in fact, aside from my spouse, I know of many that have achieved wellness through their collaboration with psychiatric professionals. My remark as to “bitch and moan” pertains to forums I had participated in some 8 to 10 years ago and some more recently where the same core group of individuals is still repeating the exact same experiences and thoughts without any proactive and/or positive discussions as to achieving wellness. Additionally those sites are devoted to a specific treatment option and not necessarily “the psychiatric system.”

Unlike you and your position and statement I do not find “brutalized by the psychiatric system” derogatory but one can certainly construe that from your remarks especially those that have achieved wellness and the compassionate and caring licensed professionals. I simply find your thought interesting and from my experiences untrue but then again I am not naïve to the fact that all do share varying experiences. I personally am not complacent and I try not to waste my efforts bitching and moaning about past failures but learning from them and directing my discussions and sharing toward alternatives and/or adjunctive options to achieve wellness.

Warmly,
Herb
VNSdepression.com

there is no censorship on the Icarus Project discussion board ..just knowing a person is free to speak their mind without censorship is very freeing.
Posted by: Denise at January 16, 2008 09:31 AM

My posts have been deleted from the Icarus Project.The radical cure for SZ that I propose is too much for them. SZ is a disorder not a super power.
Roky

I was censored, given a "week probation" if I came back and stopped posting about SSRI and suicidal ideation using antidepressants on CABF bpkids dot org when it was a free site for parent support for kids w "childhood bipolar".That was in 2001 before the black box warnings and based on personal experience with my daughter and Zoloft. It got to the point we were demanded to write "based on personal experience"; then it went as far as to require us [parents in a parent forum]"I am not a doctor, this is not medical advice". CABF had/has their own disclaimers, obviously the views of forum commenters do not reflect the site, and these were parents obviously in that forum. In the end, I was ultimately banned from posting, where I could read but not log in to add a comment. One person who was a moderator that quit, wrote emails to people telling them CABF had a "list" of posters [I was on it] to monitor, edit[yes edit],delete[yes delete, which would throw the context of threads off]or ban.One person was banned and told she could post only if Martha Hellander read and APPROVED the comment first. That person declined as you can well imagine. Now they want ppl to donate money to read or post. They can stop mailing me those cards for donations and stick them where the sun don't shine, and that's not Seattle.

Interesting threat to ban Spiritual Emergency from the Candid Psychiatrist site; in the Schizophrenia article thread. Candid Psych assumed she was a man due to her bad internet manners. I am not impressed with Minot due to that discussion. Finding the link to the site from this one, maybe I'm late in the game to his other opinions that people are impressed with.

I would rather have words with someone who found me objectionable than find they quietly removed my posts, without even talking to me about them, which seems punishing. But then it seems what I like about Minot has alot to do with what some people can't stand about him. I like a psychiatrist who has issues, I won't even work with one who pretends they're not human, pissed, authentic, difficult, and etc just like me. Most play god, he doesn't, and makes that abundantly clear.

I'm sorry if my threat to spiritual recovery was heavy-handed, but the text of my comment to her says it all. My site used to have a forum, and she opened numerous threads there so she could copy and paste huge swaths of information (including images) from her website rather than just posting links. It got to the point that she certainly occupied more memory than all of the other posters combined. That (and spam ads for porn, etc.) led to my decision to drop the forum altogether.

After I updated my website her first post not only challenged my article (which was fine), but she had the audacity to tell me that I should have informed her before I terminated the forum. (???!!!) (FYI, I had to screen the emails of each registered user on my old site before sending out notice of my site update, and did NOT delete SR's email, despite the above.) THAT admittedly pissed me off, and I didn't want her messing up this website the way she did the other one, so I confronted her with her history of bad internet etiquette to nip it in the bud. It had NOTHING to do with the content of her posts, which is why they remain unedited on my website today.

The fact that I mistook for a man was an innocent mistake, which I apologized for in the comments.

I appreciate the clarification, and look forward to reading further.

If anyone has any questions about MY site www.vnsmessageboard.com, you are more than welcome to ask me or any one of my members. The garbage that Herb spews about my site and ECT.org is based on the fact he has been banned because of his atrocious behavor towards members and obsessive stalking.

He's pissed because he in not welcome nor allowed into the sites. This man has caused more disruption and personal attacks on members than any spammer or hacker could even dream of doing. Most of the epilepsy sites have banned him for the very same reasons.

Go check it out for yourselves. Even his own site is nothing more than a thinly disguised personal vendetta against Juli, myself and any other site owner who has banned him. No one even bothers to post there. He sacres them away with his droning tirades.

WOW, so Herb is what he appears to be isn't he?

and he has the nerve to sign it all "warmly". Well, after being attacked by him, I can safely say thanks for this comment 'birdbomb'.