Tag Archives: compassion

Weekend sendoff: See you at TAM!

No, I haven’t gone on hiatus again. My last post garnered a lot of unexpected attention, so I decided to leave it up a little longer. I’ve been told that Newly Nerfed may get a plug during the TAM paper session, and I had intended to write something all serious and connected to my thesis of “compassionate skepticism” so that any new readers wouldn’t be confronted with my mooning over videogame characters. (At least not initially, but they’re in for it if they keep reading, as you know.)

Anyway, I wrote that post a little prematurely, apparently, but I’m gratified that it got people talking about the subject, since it’s one I care about passionately. Heidi Anderson was kind enough to repost it at She Thought, and I spoke with Kylie Sturgess on the Token Skeptic podcast about the post as well as some other topics, like Deaf culture. I will be posting a sequel of sorts next week that goes into more specifics, and after that I have no idea how long it’ll be until I recover from TAM to start blogging again. (It’s going to be awesome, but a major physical challenge at the same time.)

I’ve seen some criticisms lately of TAM itself and more generally of social skeptical events. The charge is that the social aspect — seeing celebrities, partying, etc. — diminishes or distracts from the more important skeptical work, either at TAM or in general. I can see the point. But I don’t entirely agree. So much of what we do these days takes place at a physical distance from our fellow skeptics, on blogs and podcasts and on Twitter and Facebook. Of course there are tons of in-person skeptical groups and events. But there are also people who don’t get much if any meatspace interaction with other skeptics, due to location, time, finances, family, disability, and so forth.

Someone made a comment to…I think it was Heidi, but I can’t find the page now, sorry. It had to do with civility and tone, and one of the points he made resonated with me. It’s very easy to spew insults and vitriol to people who are only pixels on a screen to you. As a former general-interest forum administrator, I encountered this frequently when I had to do the equivalent of breaking up kindergarten slap-fights between posters. Things were said that I can guarantee you would not have been said had any two given opponents been face-to-face.

No matter how well your online and offline personae match up, you’re still just a name, or an alias, to someone who doesn’t know you. There are people I’ve met online and then in person, and even if the meeting was exactly as I expected, it still affected how I saw the person online. Even if the message doesn’t change, there’s context behind it. And in my experience, that context can change a relationship for the better. Maybe that context will come from a serious interchange at a workshop. Or maybe it’ll come from getting squiffy together after a long day of workshops. In my opinion, each one has its benefits.

Well, I’m boring myself now, so I’ll sign off. I’m really looking forward to meeting anyone reading this who’s going to TAM. I’ll be the gal with the rainbow cane, as seen in the picture on the About Me page (and probably dressed the same). And to my fellow countrypeople, have a safe and happy holiday weekend. Apropos of nothing, I send you off with this little-known gem: Louis Armstrong doing death metal.

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Bitten and shy

There is an ongoing war, as well there should be, waged by the proponents of medical science against those who reject, demonize, deny or misuse it. The war takes place on many fronts and on many levels, and some successes include the continuing downfall of Andrew Wakefield and the pronouncement by the British Medical Association that homeopathy is “witchcraft.”

Skeptics generally don’t have much use for people who have rejected medical science, or “allopathy” as some of those people would have it. (A term, by the way, invented by the guy who made up homeopathy.) Such people are usually characterized as, variously or in combination, stupid, ignorant, denialist, uneducated, brainwashed, crazy, deluded, superstitious, and even dangerous, to themselves or others.

And some of them are. The homeopath who killed his daughter by refusing actual medical treatment for her eczema is dangerous and possibly crazy. Religious objectors to blood transfusions and chemotherapy are superstitious. The scared parents of autistic children who throw in their lot with the anti-vaccination movement are poorly educated on the topic of vaccines. And then there’s people like the Health Ranger and J.B. Handley and so on, people who I won’t dignify with a link, but to whom I am happy to apply some if not all of the above epithets — and worse.

But there’s a certain population that I believe deserves greater compassion and understanding. People with long-term, incurable chronic illnesses may often come to reject science-based medicine because they themselves have come to actual harm from it, and sometimes repeatedly. I’m not talking about hypochondria or persecution complexes. I’m talking about people who have undergone actual trauma, mental or physical, at the hands of medical doctors. For example, this link is not from the most reliable site, but the incidents related are far from unheard of in the ME/CFS community — misdiagnoses, harmful biases, lack of understanding about the illness, and worse.

Don’t get me wrong. I’m not giving anyone a pass. I went through a hellish time when I was diagnosed with Graves’ and the incompetent idiot of an endocrinologist overdosed me so heavily on anti-thyroid medication, it took a year for me to recover from being seriously hypothyroid, during which time several other problems arose that have left me disabled. After that it took uninterested doctor after uninterested doctor before I found one who not only gave a crap that I was no longer able to function, but even cared enough to treat me! Oh yes, I was bitter. But rejecting science altogether because of your bad experiences is like never reading a book again because you thought Twilight was a piece of excrement. All of this taught me how to better evaluate doctors, and since then my experiences with physicians have improved greatly.

So this is not an apologia, but rather a plea for understanding. The people I’m talking about haven’t simply slipped into a life of hippy-dippy naturopathy due to the toxins in the air and the mercury in vaccines. They have been physically injured, had their illnesses worsened, been humiliated and brushed off and laughed at and completely invalidated by physicians, all the while struggling to cope with being sick or disabled. Not only has science “failed” these patients (as they see it) by not having provided a cure or even a treatment for some of those illnesses, but its individual representatives have personally failed them as well. These people don’t just imagine they’ve been done wrong by science, like the antivaxxers — they legitimately have been, just as my being overmedicated and spending months in “hypo hell” were not figments of my imagination.

If you put yourself into that position, I don’t think it’s too hard to see why someone might eventually give up on science, especially someone who has undergone years if not decades of these problems. Maybe they turn to homeopaths and naturopaths, who of course profess deep caring and understanding because they literally have nothing else to offer…but it’s attractive to patients who have been routinely dismissed by “allopaths.” Or maybe they glom on to what looks like science — such as a single, as yet unreplicated XMRV study — but refuse to let the actual scientific process take place before canonizing its researcher and creating a cult of personality, not of logic or evidence. Neither situation is positive and, again, I am not excusing people on the basis of what they’ve gone through. It is very hard to hang on to one’s critical thinking in these situations, but that doesn’t make it okay to give in to paranoia and superstition.

From a page titled "Nazi Connections to Allopathy." Seriously.

When it comes to winning back the minds of patients who have retreated from science as a reaction to their experiences, perhaps skeptics need to take a different tack. Some people go down the rabbit hole and never come back, of course. (And I always wonder about those anti-science converts and what’s going to happen on the day that science produces a cure or treatment for their illness, the one that homeopathy will never come up with. Will they reject it on principle? Unlikely.) I’m not talking about them, because why fight a battle you can’t win? But I truly believe skeptics need to stop lumping all these “denialists” into the same camp. Promoters of science-based medicine will occasionally throw a bone in the direction of “feeling sympathy for these people but…“, a statement unlikely to reach someone who has heard this line zillions of times. True compassion, however, just might.

We skeptics constantly exhort people to stay open-minded and thoughtful about these subjects, but the same onus is upon us. Assumptions about the reasons and motivations behind people’s rejection of medical science do nobody any good. Sick, exhausted, cognitively impaired patients do not deserve to be tarred with the same brush as those who actively seek the defamation and destruction of medical scientists. To people for whom there is no medicine other than Western scientific medicine, any rejection of that may seem intolerable, no matter what the reason. But the reason truly matters, because when you ignore that, you may be ignoring someone you could help, if only you hadn’t written them off like they’ve been written off so many times before.

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Compassion only goes so far

TinFoilHatAreaSkeptics, in some circles, have a reputation for being cold and devoid of emotion, with a bleak view of the world as seen only though the sterile lens of science.

Well, bullshit, obviously. You can’t generalize a group like that, and even if you could, it doesn’t take a whole lot of reading in skeptical blogs and literature to see plenty of humor, passion, and wonder going hand-in-hand with inquiry.

But the stereotype is what people like the anti-vaccination proponents would like you to think. Their message goes further when “the opposition” — also known as medical science — is painted as heartless, solely profit-driven, and without a thought for, who else, the children. (This argument of course falls flat when you consider how many children, or entire communities of children, are harmed when parents decide not to vaccinate.)

In an earlier post, I wrote about how even as I was being targeted by a bottom-feeding snake-oil salesman, I could understand what had driven him to that point. As unpopular as it may be for a skeptic, I’ve tried to do the same thing when it comes to antivaxxers. By this don’t misunderstand that I’m talking about supporting their position. Rather, I think it’s worth it to disprove the stereotype and look at the debate from an emotional standpoint.

Reading through the stories of parents whose children became ill or died from either a proven or imagined reaction to a vaccine, I find it hard to be entirely unsympathetic. When this happens to a child, be it an actual side effect or a sad coincidence, I can only imagine how devastating it must be. I understand that the parents must desperately want someone or something to blame.

Combine this impotent anger and grief with the ease of finding antivax networks all over the Internet, though, and some parents get steered off course. They must have understood once that vaccinations benefit both their own child and the entire community, or they wouldn’t have done it in the first place. But when something happens to their child, suddenly all their knowledge about how many lives are saved through vaccination vanishes. Instead, they are provided with validation that they can blame something: the vaccine. This emotional validation is supported by bad, cherry-picked science, and sometimes by the unfortunate cachet of people like antivaxxer Jenny McCarthy. To me this is no different from the chronically ill person who gratefully grasps at the snake oil, because it’s being sold by someone with whom they share a terrible experience and who finally has an answer and a scapegoat for them. It’s not an excuse for poor critical thinking, but it is a reason.

Then there’s the sad case of Natalie Morton, who died on September 28 shortly after being vaccinated against HPV with the drug Cervarix. Antivax networks picked up this story and ran with it, naturally. But then it turned out that she was seriously ill with a tumor at the time she was vaccinated. And here is where my compassion for the antivaxxers vanished. Any critically thinking (or even just “thinking”) person would recognize that Natalie’s death, while tragic, doesn’t make a case for ceasing all vaccinations, due to her condition.

Instead they went all conspiracy theory.

I can’t hold any respect for people who consciously deny or distort reality in order to validate their delusions, and I certainly can’t continue to be sympathetic. I truly understand the way pain can short-circuit logical thinking, but there is no excuse for twisting facts or outright lying in order to further your cause. Your personal pain is no excuse to endanger others’ lives. The ideal of skepticism is that when faced with evidence that disproves our beliefs, we take that evidence into account and may change our beliefs accordingly. What’s happening here is the exact opposite of that.

I plan to continue this theme on a more personal level on Friday, but if I wind up chickening out, don’t judge me too harshly.

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