Before I'm willing to add a link to a discussion forum however, I check it out. I'm looking for a few specific qualities:
Recently, at one of the forums I do participate in sporadically, someone posted a link to the discussion forum of schizophrenia.com. I had been to the site before but wasn't aware that they offered support forums. And so it was that I decided to test the waters...
My first comment was in regard to an Australian woman who had found a treatment program that works well for her. Given the links that are being identified between various forms of trauma and schizophrenia I thought her mention of childhood trauma was interesting and shared this quote in response:
The cornerstone of Read's tectonic plate-shifting evidence is the 40 studies that reveal childhood or adulthood sexual or physical abuse in the history of the majority of psychiatric patients (see, also, Read's book, Models of Madness). A review of 13 studies of schizophrenics found rates varying from 51% at the lowest to 97% at the highest.
Source: The Guardian
A moderator, SZ Admin, responded to offer agreement that "There is definitely a strong link between high levels of stress and trauma and psychosis," however he disagreed that child abuse was a contributing factor. He suggested I read an analysis of Read's work as written by a professor in San Francisco.
I read it, but I didn't agree with it. After all, you're going to have to present a very strong rebuttal to counteract 40 different studies and I didn't feel he had done so. I shared my opinion with the moderator at which point I was chastised: Unfortunately, your comment reveals that you don't actually read or understand what the link I provided on the topic of child abuse and schizophrenia. I hope you can put more effort into understanding what we have on the site here.
Part of the problem is that Read didn't single out child abuse as the sole cause of stress or trauma and neither did I. In fact, I had specifically pointed out Read's emphasis on stress and trauma as contributing factors. The other problem is, am I not entitled to form my own opinions or must my opinion be in alignment with the moderators if I don't wish to be labeled as incapable of reading or understanding?
Meantime, I had made another post as related to the work of Jaakko Seikulla. At this point a second moderator, assistant admin, appeared and invited me to take a "quiz" to test my knowledge of schizophrenia. I was advised that I should pay particular attention to question #7. I clicked the link and was greeted with this message:
Do you have all the facts straight on schizophrenia? Test your knowledge and find out with this quiz!
http://www.healthcentral.com/schizophrenia/quizzes.html
I'm always up for learning new facts so I was down with the quiz. Here we go -- question #1...
To be diagnosed with schizophrenia, a person must:
A: Test positive on a blood test.
B: Experience psychotic, loss-of-reality symptoms for at least six months.
C: Have a "split personality."
D: Be under 30 years old.
Ummmm. Do you see a problem? The correct answer is none of the above although answer B does come close. However, the actual answer is that in order to be diagnosed with schizophrenia, positive or negative symptoms must be present for a minimum of six months. Yet according to the quiz, one must be actively psychotic for six months straight.
Let's think about that... imagine you're experiencing psychosis and are taken to the hospital. Are you placed on observation for six months without treatment? No, of course not. You're given anti-psychotic medication, almost immediately. And what do anti-psychotic medications do? They knock down the psychosis. I've never heard of anyone who has experienced six months of straight psychosis while in medical care. While it's possible that some people might have experienced the same who have never seen a psychiatrist or taken medication, those individuals wouldn't be included in the statistics because they haven't been diagnosed.
I continued with the rest of the quiz and emerged with a score of 10 out of 10 but I also shared my concern with the moderators that the quiz was presenting misinformation.
As for question #7, it stated flat out that psychotherapy is only useful for those with less severe symptoms or those whose psychotic symptoms were under control. Apparently, we are to completely dismiss the work of clinicians like Jaakko Seikulla because the quiz told us so.
Ongoing research shows that over 80% of those treated with the approach return to work and over 75% show no residual signs of psychosis. Official government statistics comparing 22 health districts in Finland found that Dr. Seikulla's district was the only one not to have any new chronic hospital patients in a two year period and led the National Research and Development Center for Welfare and Health to award a prize for "over ten years ongoing development of psychiatric care".
Meantime, I was curious about the quiz writer and since a link was offered, I clicked on that and was transported to the personal profile of Christina Bruni. Ms. Bruni is a diagnosed schizophrenic who presents herself as in remission -- good for her is all I can say. Meanwhile, one of the items I read on her profile alarmed me:
One Friday night, she became paranoid and had racing thoughts, and exhibited odd behavior all night, unable to sleep. The next morning, her mother drove Christina to the ER, where she was diagnosed with schizophrenia and placed on the psych ward.
Everyone remembers the correct answer to quiz question # 1, right? Did Ms. Bruni omit some critical details for the sake of brevity or was she really diagnosed with schizophrenia as based on a mere 24 hours of symptoms? That's a disturbing thought, isn't it?
Having been formally baptized into the wonderful world of schizophrenia.com by the quiz, I wondered, was this their idea of the epitome of knowledge and information?
[Update: This thread has since been substantially edited by SZ Admin. assistant admin's response to me has been removed, as have my responses to them. In its place stands a new response from SZ Admin that he made after he banned me with the full knowledge that I cannot possibly respond to it. Seikulla's work meantime has been called out for being "dated" in spite of the fact that it's only a few years old whereas the paradigm of non-recovery that SZ Admin clings to so ferociously has been around for more than a century.]
Moving on...
In the area of the site dedicated to book recommendations I suggested Robert Whitaker's Mad in America. The post was deleted. For the sake of politeness I suggested that I had accidentally forgotten to make the post and only previewed it instead (there is no preview option). I re-posted my recommendation. SZ Admin tagged it with a scathing rebuttal from E. Fuller Torrey.
I responded that I'd had trouble taking Torrey seriously ever since he came out of the closet with his cat-poop theory on schizophrenia, and that I was especially dismayed by the techniques of his Treatment Advocacy Center (TAC)"who may rightly attempt to address the needs of the very small proportion of schizophrenic individuals who are violent while systematically tarring the entire lot with the same brush and thus, contributing to the ongoing stigma of the vast majority of schizophrenic individuals who are not the least bit inclined to violent outbursts."
I included a lengthy quote from Dr. John Grohol who addressed those issues very well, including giving a firm reprimand to the TAC "for their fear-mongering ways and promoting the “10 times more likely” number as fact."
SZ Admin came along to trim that quote back to nothing but a link although the Fuller quote was allowed to stand in its entirety. The thread was then locked.
[Update: The posts I'd made recommending two books (Whitaker's Mad in America and John Weir Perry's Trials of the Visionary Mind) have since been removed by the administrators.]
By this time, I'd noticed that a couple of the posts I was certain I had made had disappeared so I was quite intrigued when another user by the name of lunar_wire initiated a thread titled: What They Don't Want Discussed. He noted that he'd been there a few months previously but left when the moderators began deleting his posts and insulting him. That sounded rather familiar.
Meantime, the moderators carried on gleefully: editing posts, radically modifying posts, deleting posts, locking threads. I saw more posts deleted and amended in one 24 hour period than I've seen in the entire history of other sites.
Overall, I can best sum up the moderators' behavior as disturbingly cultish.
To heighten our awareness, Them and Us identifies four basic cult behaviors that influence our thinking:
1) compliance with a group,
2) dependence on a leader,
3) avoiding dissent, and
4) devaluing the outsider.
These forces operate in all aspects of society. The core process is devaluing the outsider, resulting in Them-versus-Us behavior.
Source: Them & Us
At the end of the day, how did schizophrenia.com score?
Civility: I have to give credit where credit is due. With the exception of the moderators, the participants were kind, courteous, supportive and empathic.
Expression: Expression is only permitted within a narrow framework as defined by the site moderators. Any other personal perspective will be modified or deleted by the moderators.
Quality Information: The schizophrenia.com site is large and I'm not in any position to determine the quality of every single article there. You've already seen what I saw, so I suggest you make your own decision as to the quality of the information offered.
Balanced Moderation: It was the most controlling and heavily moderated environment I have ever witnessed in any online community.
schizophrenia.com will make it to my links section, but only in the warning section.
A very intelligent user from the schizophrenia.com site happened to pass a few details on that I thought were quite interesting. That user wished to express that they didn't agree that the mods behavior was cult-like although they thought I had some valid points. They also noted that most of the posters adhere to the genetic/medicine model and E. Fuller Torrey has a number of supporters there, including those who consider him to be "God-like". (I guess that explains why my cat-poop comment didn't go over so well.)
I felt their comments strengthened my comparison considerably.
four basic cult behaviors that influence our thinking:
1) compliance with a group: In this case, the group is composed of a dominant mindset: the genetic/medical model
2) dependence on a leader: E. Fuller Torrey seems to fit well here.
3) avoiding dissent: My experience and the experiences of others, such as the individual identified as lunar_wire, are an excellent testament to this point. The last time I looked at that discussion, the members themselves we're getting into the fray. lunar_wire was accused of being a "scientologist" who should "get off you ass" and "stop posting all your crap". I noted, with some concern, that these personal attacks were ignored by the moderators. Apparently, these same actions have been taken against lunar_wire before and he only returned because he's concerned about others not getting the opportunity to be exposed to anything other than the genetic/medical model.
4) devaluing the outsider: This was evident in the very first response SZ Admin made to me: "you don't actually read or understand. The implication is that I'm dumb; I'm stupid; I don't know how to read; I'm the new kid on the block and they're going to push me around. The problem was, within the Them & Us model, I had identified myself as a "Them" by my unwillingness to comply with their mindset. This was then confirmed by the local authority, the primary administrator. From there on in, it was open season... on me.
Within a healthy environment a range of differences are easily tolerated within a broad spectrum. Within an unhealthy environment however, the spectrum narrows considerably and any deviation must be punished. The dissenter must be brought back under the control of the prevailing mindset for the mere fact that he/she is different could lead others away from the fold and this would weaken the stability of the core group. For this reason, being different is equated with being threatening.
I highly recommend the Them & Us article to everyone for this exact same dynamic unfolds in numerous relationships within our public and personal lives; not necessarily within a cult setting. Such relationships always rely on a power imbalance as a means of either forcing compliance or punishing non-compliance. In the old days, town authorities might round up a posse while townsfolk would start to gather stones. Within the online environment, moderators-as-authorities use their tools of selective censorship, banning, and scapegoating while those within the community begin to gather into a henpeck. There is a price to be paid for being different.
Does that mean that individuals who find the "genetic/medicine" model to be most relevant for them shouldn't get together to swap notes, share stories, and offer support? Not at all. The problem here is that the site presents itself as a model of inclusiveness when it isn't -- it's highly exclusive. It's quite possible that the problem is that if it would advertise itself as the exclusive model it is it might not get as many members. Not only would that reduce the potential membership, it might even go so far as to affect ad-generated revenue that the site might be dependant upon to function.
Meanwhile, how many individuals might wander in there who are a little bit different and find themselves bullied, scapegoated, hounded, silenced, and pushed around as a result? I think it's particularly reprehensible when these kind of actions take place in environments that are supposed to be "healing". Those kind of environments tend to produce a lot of scars.
What's really interesting about this particular little scenario is that right away, I picked up on the theme that "scientologists" are the bad guys, because they're a cult. What the moderators seem blithely unaware of is that they have internalized this exact same dynamic and are possessed by it; their very behavior mirrors that which is the mainstay of a cult dynamic.
Not healthy. Nope. No way.
It's interesting to note that the board moderator has since issued a blanket-wide warning in regard to Anti-Science, Anti-Progress, and Anti-Psychiatry People. My name was mentioned once or twice and just in case there was any doubt about what camp I was in, my name was specifically linked to Thomas Szaz, a confirmed enemy of the genetic/medical model. I've never read Thomas Szasz and I don't believe there is a single quote or link to him or any of his material on any of my blogs. Still, I'm starting to get the feeling that maybe I should track down some of his books.
See also: Bias & Stigma Within the Medical Community?
schizophrenia.com, Schizophrenia Discussion, Schizophrenia Forums, Cult Behavior
