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 Reddit.com so people could vote. Choices included ...

Ahani
Kaimana
Aiko
Libertad
Mira
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.'"

[pause]

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?

Introducing ME/CFS

It's always tough to create a 25-minute set list. So many tunes, so little time. But when we were choosing songs for last weekend's Tucson Folk Festival, one had an automatic in: Everybody Knows About Me, the closest thing we've got to a protest song. We figured folkies would respond well to it.

I introduced the song with my standard rap:

"I wrote this next song about someone living with undiagnosed myalgic encephalomyelitis. If you've never heard of that, it's probably because most people refer to it as as 'chronic fatigue syndrome,' which is a STUPID name for a very serious disease."

One neat perk of playing the Folk Festival is that the people running sound record everyone's sets. They handed us a CD of ourselves right after we finished. So, first chance I got, I played the CD for the person who inspired "Everybody Knows About Me." He couldn't come out to see us because he was too sick. He rarely leaves the house.

He listened. After he complimented us on a job well done, the following conversation ensued (extremely condensed/paraphrased):

Him: "You shouldn't mention 'chronic fatigue syndrome.' It gives people the wrong idea. Just call it myalgic encephalomyelitis."

Me: "How will that help? No one knows what myalgic encephalomyelitis is.* The audience would sympathize with people who have ME, then continue to treat people with chronic fatigue syndrome badly because those people are just tired and lazy."

Him: "They'll make the connection. They'll understand that it's wrong to be prejudiced regardless of what the diagnosis is."

Me: "Eh. I doubt it."

What do you think? Do I shoot our cause in the foot by invoking the very name that promotes the bad stereotypes? Or is it better to bring the stupidity of that name out into the light?

* * *

* For those of you who are reading this from somewhere other than the U.S., the vast majority of Americans have never heard of ME. When I say "myalgic encephalomyelitis," the response is always a blank stare, followed by, "What's that?"