CENSORSHIP FROM POZ MAGAZINE – HIV STIGMA WITHIN THE HIV+ COMMUNITY
By John Strangis
After testing positive on an HIV antibody test, and taking medication for more than a year, I became aware of the dissident perspective on the matter. After carefully comparing the orthodox and dissident sides of the issue, I made the personal decision to stop medication.
At the time I thought this decision would be no different from a cancer patient choosing to follow an alternative treatment plan instead of following the classic options prescribed by oncologists. I never dreamed I would be subject to abuse, derision, and finally censorship.
I was naïve. I decided to comment on a thread posted on POZ.com, the website of POZ magazine–a magazine for HIV positive people. Well, what happened next left me in stunned disbelief and only reinforced the idea that the path I chose was the correct one. Something was definitely wrong.
What follows is a description of what happened the first time I tried to connect with others on POZ.com’s forums:
It began when I replied to a comment on POZ.com which described the alleged death of a person with AIDS after this person stopped taking HIV medications. Another member of the forum posted a reply to this comment claiming he had stopped medication because he was convinced that what was being told to everybody was not the complete truth. Considering that I made this same decision, I decided to post a reply of my own describing why I made this decision and the alternative plan I decided to follow.
In my post I included references which would help people understand why I did this, both to back up my claims and to spark a thought in people’s minds. I did however mention that I am not stupid; I was aware of what might happen if my decision was incorrect. This comment was deleted by the moderator and her questionable replies prompted me to document all that followed.
Just to clarify, Schedir81 was my screen name on the POZ forum:
After my first comment, the moderator wrote:
Schedir, I deleted your post. We do not allow denialist crap on this website and that’s exactly what your post was – denialist crap. Do it again and you risk being banned.
Consider yourself warned.
No problem, I expected my post to be deleted. I did not post denialist crap; I posted my own comment which was only meant to spark a thought in those who would read it. However, I will not mention it again. Like I said, I did not intend to offend anyone with what I wrote and it seems obvious I had a good reason to do so.
Ann wrote back:
I’ve been around long enough to recognize when someone is parroting denialist propaganda when I see it.
If you want to go down that road, that is your choice. Just don’t expect to use this forum as a means to temp others to follow you into a preventable death from eschewing necessary hiv treatment.
Again, consider yourself warned.
I wrote back:
Yes, I have been warned and just to inform you, I was not spouting propaganda. You read my post and I have been on this forum for a while you can see that clearly. However, I will not post anything like it again, don’t worry.
Incredible! Since when did discussing opposing scientific views become something that angers people so much? This censorship reinforced my belief that the dissident arguments may be correct and it was obvious that what I wrote was something these “moderators” do not want other members to be informed of.
What gets to me the most is that I have been on that forum for a while and the members there know I have been diagnosed HIV positive, so you can see I am not just some person randomly popping up on the website to lure people into following the “denialists.”
The replies to me from Ann made it appear as if I was on a political forum, not one where people are struggling with a medical condition.
I did not post anything offensive, I only described what I am attempting to do for my own health and why. I also emphasized that others who read my posts should not attempt to do the same, that this was just me speaking for myself.
These people always speak of stigma, and here they were stigmatizing and shunning me just for stating that I have stopped taking medication, treating me like a very bad child who had to be punished. I am a grown man for heaven’s sake. So is everybody on that forum–a grownup.
I thought this was the end of it. My ban lasted for several months until one day I noticed it had been lifted. I knew it was the software which lifted the ban automatically after an expiration period, something the forum moderators were happy to point out to me once I decided to post another message on their forums.
I thanked them for restoring my privileges but I did point out how they (moderator Ann) infringed upon my first amendment right by banning me for asking valid questions in regards to an alternative view on a medical condition.
The moderator who replied, arrogantly, explained to me that my first amendment rights “do not apply” on the forum–that I should learn more in regards to the constitution and that I should think twice about coming back to taunt Ann.
Well, I did explain to him that I was well aware that my first amendment right does not apply to private entities, but also that the American people do not take kindly this sort of thing, private entity or not and especially when it has something to do with a medical condition, civil rights etc.
I left it be, we said what we had to say and I promised never to speak of anything controversial again. It seemed as if the story was finally over with, based on his response:
“I’m all for moving on but let this be the last warning to indeed move on.
You broke the rules so your banning was warranted and for the record, no one had second thoughts and lifted your ban, the software was triggered that your ban was up. So sorry bud, no change of heart or even a thought was given about your being allowed to return.
I’m going to take you at your word that you don’t want to spend any more time on this and lock this thread, so let’s move along and talk no more of this.”
I looked up the forum’s rules, and lo and behold, there it was:
“Actions that may result in an immediate and permanent ban include the following:
1) HIV/AIDS denialists. Any member who posts denialists propaganda — including direct links to information produced by denialist entities or language encouraging members to research denialism — will be banned immediately. More benign questions or comments about denialism, especially when raised by a long-term member of the Forums, will be handled on a case-by-case basis.”
My question here is, why? Why are people banned for speaking of alternative views in regards to a medical condition? Are people banned from cancer forums for asking questions about alternative treatments? They might be told that those alternative views are not supported or to speak to their oncologist before considering such an option, but I have never seen anyone being banned.
Why are the people who speak of “HIV denialism” shunned and swept aside almost like a heretic being sentenced to die at the stake during the times of the inquisition? Are the FDA and Big Pharma God? Why do people have to believe everything they say without question?
I proceeded to create a new thread on the forum posting the link to a naturopathic protocol and telling people to consider a few options on it because it might help them while on HAART. WHILE ON HAART. [Highly Active Antiretroviral Medication.]
After posting this message, I was banned again. This time through an Ip address ban which would not allow me to access the forum itself–at all.
As funny or tragic as it may seem, the message displayed on my screen when attempting to access the forum read:
Sorry Schedir, you are banned from using this forum!
Go away you denialist.
This ban is not set to expire
What was the reason this time? What rules did I break? Is telling people “drink this juice” or “eat these vegetables” considered dangerous information, and a reason to ban an HIV positive person from the forum?
It seems to me that these people do not want their followers to hear about the other side of the argument, or even be permitted to enhance their health in any way other than through chemical medication. Is the HIV orthodoxy really this far gone, this out of touch?
People need to be made aware of this because POZ is the largest HIV magazine in existence, and many people who have been diagnosed turn to them for help and support. This is way different than a discussion group banning you for posting opposing religious or political views. This is a medical condition and people should feel free to speak about whatever they feel might be beneficial towards their health.
The time has come for people to wake up, and ask a simple question, one that perhaps a child would ask. It is one word:
The Truth Barrier obtained some additional information. “Ann” is Ann Smith, one of two listed staff moderators.
Posting at POZ.com is not free. All prices and rules are detailed below, cut and pasted from POZ.com.
Some things really stunned us. For example, this update indicates that members are only allowed to post 3 times for free on the Am I Infected? forum; This restriction only applies to this forum.
[There is no "dissident" or "rethinker"HIV forum that charges members any money for participating in discussions about HIV/AIDS.]
Posted Tuesday, August 28, 2012
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Research credit: Mark Harris, Truth Barrier contributor