This has been a crazy week here at Camp Other.
I was originally going to post my usual Friday Four science column, but it may just slide to the Saturday Six or something like that.
I have something else to say now, and I'll post more science later.
This post isn't about being banned from a forum, if you were expecting to hear more about that... Yes, I was puzzled why I got banned, and so were others. It happened, I wrote about it, and then I was going to move on.
However, I can't completely move on without saying a few things about the comments I've been receiving.
Right now, what I'm hearing and seeing is that people have been asked on the forum to not even mention the name, "Camp Other".
Not to speak about it, and any attempts to discuss it will lead to the thread being closed. A request was made to PM the moderators about anything having to do with Camp Other instead.
And I'm also getting comments and reports about other people who think they've been censored, and think censorship on various groups has gotten out of hand.
Why I'm being censored now, I don't know - I consider this the hallmark of absurdity.
First banned, now censored?
This is a blog about science and social issues surrounding Lyme disease and other tickborne infections.
Mentioning this blog anywhere really shouldn't be that controversial... I don't think anything I've said anywhere online is that particularly controversial, other than occasionally I mention the somewhat-controversial-to-mainstream-medicine-IDSA-guidelines idea that Lyme disease might be a persistent, chronic infection.
But I want to say something about the people left behind, because what is happening there is controversial:
People shouldn't have to be in fear of what they say getting taken out of context, or be afraid to ask or be asked a challenging question - or be afraid, perhaps, of not saying something quite the right way using the right words.
What we need to do when people disagree, or challenge assumptions, or ask for more information is to simply respond to that: Have a dialog. Talk. Discuss.
A lot of misunderstandings that people have can be cleared up when they have a meta-discussion - which is a discussion about how we discuss things and why we discuss things the way we do.
Shutting people down, kicking them out, closing the door, and putting earplugs on doesn't make them go away. They're still out there, saying something to someone - maybe even about you - only now you can't hear them.
Even if you can't hear them and they are far away, chances are the ideas they hold dear and the values they possess may be found in the next person who comes in the door, a stranger who greets you, or a random person who shows up on an online forum.
And then you will have to deal with those same ideas, same values, and other things you may disagree with or be challenged by.
People will also have an effect on those they leave behind whenever they go away - there are always ripples in their absence, whether they left because they were banned, left of their own free will, left because their computer died, left due to poor health, or any of a number of reasons.
Because when it comes to being amongst other patients - we all ultimately share in the same suffering and want the same things. And we notice that absence.
What makes a support group what it is is the patients, more than anyone else. And the needs of patients are what is paramount: building community, research, safety, understanding, proper diagnosis and treatment, and support. And just knowing that we're reaching out to others who are going through - or have gone through - the same things we have.
Maybe how each of us express our needs for those things differs, and maybe how we hope to achieve it differs - but the bottom line is that through dialog we can discuss those differences rather than deny them, or push them away.
Censorship is not the way to go. More communication is, in my opinion. Even if it's somewhat messy and misunderstandings take place. That's what compassion and forgiveness are for - allowing mistakes and accepting apologies.
If someone is truly being egregious in their behavior on a forum, that's one thing - and I think one has to draw the line somewhere. Somewhere reasonable.
I may have only been on this one forum for a few months, but that's enough time to see how things went - and it's particularly telling how things went after I've been gone. When people voluntarily leave due to censorship and people try to leave because they want out, that's saying something about the atmosphere they're in.
I don't like it.
I want anyone who posts comments to my blog to know that I will do my best not to censor any of you and let you speak your mind. Obviously you have to follow Blogger's terms of service - I have no control over those - and I have a rule that when you're discussing personal physicians, that you do not use their name or initial (use "my doctor" or "a friend's doctor"), unless it's in relationship to something they said in the media or a published paper.
That's it. I really don't have any other rules, other than don't spam my blog or phish for information.
I think the time is ripe for more meta-discussions that I don't see anyone having, and those are the discussions about discussions which get shut down before they even start.
My main question is: Have you been censored and what can we do about censorship on patient forums?
If you are a Lyme disease patient and you want to discuss being censored or being banned online yourself, please leave a comment. You can still be Anonymous or use a username - either way, I'll post your comment after it clears my spam filter.
If you are a Lyme disease patient and you want to bring up the discussion of censorship in general - especially in what changes you'd like to see in the way discussions online are handled - please drop me a comment.
Let's open dialog up, and see what happens.
This work by Camp Other is licensed under a Creative Commons
Attribution-NonCommercial-ShareAlike 3.0 Unported License.