I’ve alluded previously to the resistance of chronic illness forums and communities to thinking skeptically or critically about treatments and medications. In the past I haven’t named any of them, because it’s not necessarily the fault of the forum posters who get positive benefits from those forums; often it’s the moderators.
I wrote my post about recognizing a quack and then decided to go back to butyoudontlooksick.com, the forum to which I was referring in my earlier post. Although I left that community for the reasons I’ve explained, my genuine desire to share what I think is a vital skill for chronically ill and disabled people got the better of me, and I started a thread including my post. The thread got some interesting responses and I was looking forward to continuing the discussion.
Then it got locked “due to spam,” and when I privately contacted the appropriate moderator for clarification, I was ignored. Let me be clear that the rest of what I’m about to say is not directed at the forum posters and their positive contributions.
I’ve been thinking a lot about my topic of “Compassionate Skepticism,” which I proposed as a TAM paper and will be writing about more in a week or so. It’s about how skeptics can hopefully shift some of their assumptions and presumptions when dealing with people who have constant, chronic physical pain and cognitive dysfunction.
But you know what? Skeptics need to be met halfway. And this behavior is just half-assed. This is exactly why many skeptics simply write off those people as stupid. I don’t believe that to be true, but I can’t say I find this action particularly bright. To me it simply backs up my previous assertion that the moderators foster a warm ‘n’ fuzzy closed circle that excludes the controversial, even if that information could save someone’s life. As mentioned in my older post, previously that “controversy” was someone posting an article reporting the plain facts of a girl who died from eczema because her homeopath father wouldn’t treat her with conventional medicine. And now my attempt to encourage sick people to think critically is labelled spam, without even a word of explanation to me.
The last thing I wrote here was wondering whether I’m just preaching to the converted. Certainly getting called a spammer in return for reaching out in a friendly way to the possibly unconverted doesn’t improve my optimism on that score. I am really glad that at least a couple of people seemed to find the blog post beneficial. Obviously I’m not going to shut up here, or elsewhere. But I truly am done with that site altogether at this point. Management’s motto seems to be “Let’s pat each other on the head but never ever use that head.” And my apologies to all the forum members to whom none of this applies…but I can’t stomach it.
UPDATE: The thread has now been unlocked.
In other, much happier news, I am now a staff writer for AbleGamers. This is a website of the AbleGamers Foundation, whose mission is “to empower the disabled population to enjoy the digital revolution that is taking place in gaming.” The very first time I read those words, only a couple of months ago, I immediately knew I wanted to be involved somehow. You can read and/or listen to a great NPR interview to learn more, and you can also read my first story for the site. It’s not an easy road for them, as developers are far more interested in creating the next technological blockbuster than in adapting that blockbuster for a marginalized population. But as part of that population, I share the foundation’s optimism that positive changes can and will come.
That, by the way, accounts for this week’s missing blog post. In other news, last week Paul and I fostered a kitty and never let it be said I missed an opportunity to post cat photos. I won’t go into the circumstances as they’re kind of depressing and a lot of you already know about it anyway, but in the end we were able to save the life of an elder but wonderful cat, and transport her to another safe and loving foster home. If you should know anyone accessible to San Diego who might wish to provide a calm forever home for this lovely lady, please contact me. I send you off with Wynne (renamed by us, obviously):
Fourteen years old and so beautiful.
Like all Burmese, she loves exploring...
...and affection.
