Getting All Het Up: Won't Somebody Think of the Children?

A few years ago I went to a national health-profession convention where delegates could propose resolutions to be debated and possibly adopted. The quality of these fell equally into three categories: worthwhile, innocuous, ill-advised. Having previous experience in such things, the group with whom I attended encouraged me to be a delegate. They demanded that I continue to be a delegate for their own amusement after witnessing my participation in the first session.

As some might know, I don't suffer fools gladly at that goes double at events like this. If you're going to take up time at a once-a-year national meeting, you'd better have your ducks in a row and not waste it on poorly written inanities and resume padding, "I wrote a proposal that was approved blah blah blah." On the first day, I tore through a few of the more egregious proposals to the delight of my compatriots. I supported quality proposals as well, I'm not an obstructionist.

Down the agenda I could see a few odd proposals of which I couldn't make sense. The way I understand it, a few years before I attended someone proposed focusing on a relatively uncommon disease calling on everyone to "raise awareness" when they returned home. Worthless. Not only could you practically guarantee that no one would do it, focusing on an uncommon disease—what constitutes raising awareness anyway—isn't a good use of limited time and resources.

This convention, there were several candidates for "disease of the year" as I took to calling it. The most inconsequential one concerned *****, a rare genetic disease that is almost always fatal. ***** is commonly cited in biology classes during the genetics modules because it's an autosomal recessive disease and the mutation is much more common in Ashkenazi Jews, Cajuns, and French-Canadians of SE Quebec; 1 in 30 vs. 1 in 300 for the general populace. It's also significant because it was among the first genetic diseases for which a reliable, cheap screening tool was developed making it largely avoidable with proper knowledge.

The convention proposal was to "raise awareness" that ***** exists and that it's also more common in those of Irish heritage; 1 in 50 is a carrier. As was expected (and feared) the proposer was a mother whose child had *****. I could have let it go I guess, but I could see how this trend was developing so I stood up to speak against. My points were

A) The proposal offers no real action, just feel-good statements about "raising awareness"
B) This "Disease of the Year" trend was counter-productive and invited more each succeeding year, drowning out substantive proposals in favor of what amounts to emotional pleas
C) Why was *****, a disease that in its most commonly expressed form kills unremorsefully by age 5, more worthy of attention than more common and more treatable diseases like sickle cell anemia or cystic fibrosis?

The for arguments boiled down to

A) This is my personal story and that's why it's important
B) Oh my God you guys, this is like, so sad

After the session was over, the woman who proposed it came up to me with a pitying look on her face, "I’m sorry that you feel that way about *****." Taken aback by this passive-aggressive attack (I'm so sad/smug that you're an awful person), I was flustered and started to say, "It’s not about *****. It's..." when she threw up her hands in my face and shouted, "No!" before turning and practically running away.

I hate that shit. Of course you can disagree with my arguments, but don’t approach me, accuse me of being a heartless asshole by way of "apologizing", and then refuse to listen to my response. Of course, did I really expect any kind of logical or diplomatic discussion to spring from a wholly emotional proposal?

Over night, the tide turned and I received much more support when I spoke against it again the next day. Yay for logic and reason. Out of respect for that mother I declined to pursue the scorched earth strategy that a few compatriots put forth, an endless series of amendments about every genetic disease we could find with increasingly harrowing personal stories about each accompanied by vituperative declamations against any who disagreed. See, I do have some sense of decorum.

UPDATE: I've edited this entry to remove the name of the genetic disease so that it doesn't return on web searches. People looking for information probably aren't interested in discussions of persuasive argumentation. This isn't about the one disease anyway, but about my frustration with empty, button-pushing rhetoric shouldering aside reason and science, especially when it comes to healthcare.