Saturday, December 19, 2009

Lessons from Mr. Splashy Pants

Not long after reading the news item about the guys who plan to fight whalers with music, I ran across this Ted talk, in which Alexis Ohanian of Reddit describes another anti-whaling campaign.

If you don't have time for the highly entertaining video (only four minutes and change), here's the summary. The Japanese Fisheries Agency planned to kill a bunch of humpback whales in 2007. To raise awareness about this, Greenpeace put a tracking chip in one of the whales-in-peril so they could apprise people of its status.

The whale needed a name. Greenpeace submitted a list and put it up on so people could vote. Choices included ...

Mr. Splashy Pants

Guess which name won by a landslide.

Greenpeace, not thrilled about the prospect of calling the mascot for this very serious issue "Mr. Splashy Pants," extended the voting period by another week. Mr. Splashy Pants still won by a landslide. The people had spoken.

Did the silly name trivialize the campaign? Not at all. The enthusiasm over voting for it garnered more awareness than Greenpeace could have dreamed of. Oh, and perhaps due to the added pressure, the Japanese government decided not to kill humpback whales in the Southern Ocean that season.

Alexis Ohanian's conclusion: It's OK to give up control sometimes. It's OK not to take yourself so seriously, to have a little fun with your cause.

* * *

I spend a lot of blogspace trying to raise awareness about a disease that causes chronic pain, crushing exhaustion not relieved by rest, cognitive impairment, and a host of other nasty symptoms. Lately I've been hanging out on a message board with other people who want to put together an awareness/fundraising campaign for said disease. The problem: the disease is called by many names, and figuring out which one to use is not a trivial matter.

These are the main contenders:

Myalgic encephalomyelitis (ME). The name given to the illness in 1934, after the first documented outbreak. Very few people have heard of this.

Chronic fatigue immune dysfunction syndrome (CFIDS). Stresses abnormalities in patients' immune responses. Even fewer people have heard of this, as the term isn't used outside the United States.

XMRV-associated neuroimmune disorder (XAND). The latest entry, put forth by the Whittemore Peterson Institute right after discovering a link between the disease and a retrovirus called XMRV. This name has serious potential, in my opinion, but because it's only existed since mid-October, almost no one has heard of it.

Chronic fatigue syndrome. Invented in 1988, CFS is the term most people are familiar with. Unfortunately, it also trivializes the illness by implying that sufferers experience nothing worse than greater-than-average tiredness.

So the little talk about Mr. Splashy Pants got me thinking. Maybe we should do our own Reddit vote—explain our dilemma to the masses whose awareness we're trying to raise, and let them decide.

I bounced the idea off of the guy who inspired Everybody Knows About Me, my song about living with the disease. The following (highly paraphrased) discussion ensued:

Him: "It could work. We could list all the good names, with an explanation of why 'chronic fatigue syndrome' was an epic fail."

Me: "Yeah! Of course, if we do that, we're likely to end up with 'epic fail syndrome.'"


Me: "Which would still be less stupid than 'chronic fatigue syndrome.'"

* * *

Say we do this for real. Should we even include "chronic fatigue syndrome" as one of the possibilities?

Greenpeace's campaign survived "Splashy the Whale" because most people already believe whaling is A Bad Thing and A Serious Issue. If ME/CFS/CFIDS/XAND had that sort of sentiment behind it, we wouldn't need to worry over its name in the first place. And the label "chronic fatigue syndrome" has already hurt people who have it.

But some activists would reluctantly argue that like it or not, this is the term everyone knows. Better to change people's perceptions of it than start from scratch.

What do you think? Should we give up control, and put the question to the people we're trying to reach?


wyvernfree said...

I think you should not include CFS as one of the options because it has already been tried and was an unsuccessful name. (I'm a little surprised people think of "fatigue" so trivially, since it has very strong connotations to me... "fatigue" makes me think of an action hero who can't go on any longer and collapses, or something like that. But I'm often in the minority as far as word associations go, and for whatever reason, "fatigue" wasn't successful at communicating the problem.)

I think the better analogy to Mr. Splashy Pants would be thinking of a name which is medically accurate but has a cute or silly acronym. If you could think of one like that, I might be inclined to say go for it. But I can't think of any reason to include a name that has already failed.

DeppityBob said...

I don't know about the silly or cute acronym part. The idea is to get people to take this seriously. In the case of Mr. Splashy Pants, people already took the cause seriously, but a funny name lightened it up, humanized it, made it entertaining, and engaged the imagination of folks who might have otherwise thought of whale rescue as only emotionally dreary. In the case of ME/CFS/fibromyalgia, there's a lot of scorn that has to be overcome. Making it cute will only bring more scorn.

If you want it to catch on, find an acronym that's engaging, endearing, mildly amusing, yet with an aura of vulnerability. For instance, if you could match a term to KOALA, or FAWN, or JENNIFER ANISTON.

kylben said...

I nominate "Mr Sleepy Pants"

Sally said...

OK, Mr. Sleepy Pants was funny.

I know I will be in the extreme minority here, but I think Chronic Fatigue Syndrome should be used, and the effort should be on educating people as to its meaning and severity. That seems more possible than getting people to recognize a new name.

kylben said...

OK, seriously, the name is not the problem. People are very suspicious of new "syndromes" lately, and in particular ones with vague and subjective symptoms. I'm not saying it's not real, but the hurdle here is getting it taken seriously no matter the name.

The name should be whatever it is that best describes the condition, worry about the PR separately. But, that said, "ME" should be off the list, it is impossible to productively google for.

I hope "Mr Sleepy Pants" wasn't taken as insensitive, but that's about how seriously most people will take it without knowing more about it. The more contrived the name sounds, the more it sounds like PR, the more difficult it will be to change that in this climate of invented syndromes being used as excuses for all manner of bad behavior and chronic character flaws.

kylben said...

"XAND" has the drawback that if the retrovirus is found to be unrelated, or merely coincident in future studies, the name becomes inaccurate, and the syndrome itself gets tagged as disproven. "CFIDS" is pronounceable, which always helps, and has the advantage of containing part of the already understood term. But that will just get shortened to CFS anyway, so you don't gain anything.

But for better or worse, I think you're stuck with "Chronic Fatigue Syndrome". Best to work on turning around that image, though it's a long haul. But again, its not the name that has caused the current misunderstandings and dismissal, it is the fact that the symptoms cannot be objectively measured, and are taken as something that can be willfully controlled.

How about "immunogenic debility disorder". "Debilitated" means the same as fatigue, but has much more serious connotations. The phrase means something like: debilitation generated by a disorder of the immune system. That might turn out to be technically inaccurate if the viral cause pans out.

cinderkeys said...

Making up a totally new name isn't an option. If we're going to raise awareness for the disease, and we don't have the power to change the name in any official capacity, we have to go with something that already exists.

*sigh* ... Good comments, all. Both sides raise valid points, which is why I keep flip-flopping. Really, I'd like to push for a better name than CFS. I just don't know how far I should push, how much of an issue I should make it. Eventually we just have to pick one and move forward, you know?

If you have any other thoughts, keep them coming. :)

Mr. Mirage said...

I think that Chronic Fatigue Syndrome is fine, so long as people understand that Metal Fatigue causes giant bridges to fall into the water and planes to fall from the sky... Maybe that would be a pair of images to use: Collapsing bridges and air wrecks, because that is what this hellish disorder does to people. I have watched my one sister-in-law fight it for several years.