I think it is sad that the amount of money we devote to researching deadly or debilitating diseases depends not on how deadly or debilitating the disease is, and not on how many people suffer from the disease, but simply on how viral the fundraising campaign is.
I am, of course, speaking about the "Ice Bucket Challenge," a program that has been claimed to be solely responsible for the fact that The ALS Association's fundraising over the past month or two is 44 times what it was last year in the same period.
Never mind that the challenge itself is stupid, and never mind that statistically speaking there's no proof that the ice bucket challenge is the reason fundraising has been so successful this year, because there's no record of what the fundraising marketing was last year, or even if ALS made any particular kind of push, so it may be that whenever there is a particular campaign underway, as opposed to just the more general ongoing appeals for help, fundraising will be more successful, because that kind of understanding of causality versus coincidence is something Americans will never understand.
Or, maybe do mind that point, because it helps lead into what I'm getting at, which is is the Ice Bucket Challenge the reason ALS is doing so well, and is it a good thing not just for ALS but for disease-curing, fundraisers, and America, as a whole?
Let's begin with: ALS stole the ice bucket challenge from other charities. The ice bucket challenge has been around as a fundraiser for several years at least, not for ALS but for other groups which used a 'cold water challenge' or something similar. The same idea was used to raise money to help fight cancer in Auckland and to help get money for families of firefighters who died in the line of duty.
None of those groups, of course, raised $88,500,000 in just 30 days, a staggering sum of money that you should keep in mind whenever you see a politician on television explaining how Americans can't afford to raise the minimum wage or provide health care or food to poor people. Americans voluntarily gave money at a rate of $2,048 per minute for the last 30 days. Perhaps if we threw cold water on those sick babies who need health care people would write them a check, too?
The difference between people in Auckland who suffer from cancer and families whose firefighter husbands died in a burning building, on the one hand, and ALS sufferers, on the other is not, apparently, in who is more deserving of the money but in who is able to get public attention. The ALS Ice Bucket Challenge didn't start off as a media sensation. As recently as August 6, the Association was still asking people if they had even heard of the challenge. That is, in fact, the first news release I could find about the challenge on their site; the release immediately before it was for a walk-a-thon or some sort of more-typical fundraiser.
What seems to have set off the wave of ice bucketing is when Matt Lauer of The Today Show did the challenge on July 15; prior to that, the biggest media presence the ALS version of the fundraiser had was when it got on a morning show on The Golf Channel (average Nielsen viewership of The Golf Channel is just your dad, and that's only because he can't work the remote.)
If you're lucky enough to have your fundraiser be mentioned on The Today Show, your fundraiser will probably go pretty well, don't you think? The Ice Bucket Challenge got on that show because golfer Greg Norman challenged Matt Lauer to do it, and then Matt Lauer made it famous. And from there it took off.
So it's not necessarily the ice bucketing of America that is responsible for the success so much as it is happenstance that Matt Lauer noticed it and talked about it.
Beyond that, I was curious as to how much people cared about ALS versus how much people cared about publicly appearing to support something that celebrities cared about...
|Your SECOND-FAVORITE actor probably is|
kind of fond of that charity, too! Send them more money!
Clearly, people are capable of giving lots of money in a short time, and will do so if they get the right motivation, the "right motivation" being "F**k poor people etc unless a celebrity does something kind of weird like appearing at the Oscars without makeup." Or maybe if the right kind of kid dies. After all, Water.org says a kid dies every 21 seconds from a lack of clean water, but it took a kid dying from a car accident to get people to write a check.
Are viral campaigns good for people? Should we be deciding to donate based on how many people retweet something? Consider KONY 2012. Remember that? People went nuts about KONY 2012, which started as a viral campaign to raise awareness of Joseph Kony. The campaign was started by a group called "Invisible Children." Ever heard of them? Probably not. I bet you recognized Kony but not "Invisible Children," which has been around since 2003. Invisible Children produced the video that led to the 2012 KONY campaign, but after it became one of the biggest worldwide events in 2012 -- the US Senate passed a resolution regarding Kony, one of the rare actions Congress was able to achieve in the past 10 years -- the group was criticized for not having any real impact to oversimplifying or misrepresenting the issues. Hard to imagine a Youtube video oversimplifying a complex issue like African warlords using child soldiers, right?
One of the key criticisms aimed at KONY 2012 was that it contributed to "slacktivism," the idea that simply knowing about something, or clicking "like" or retweeting something, actually does much of anything; "slacktivism" lets people feel like they helped out without actually doing much; the Ice Bucket Challenge isn't quite slacktivism because people are giving, but how many people who retweet or post a video or talk about Patrick Stewart's challenge then go on to give money to ALS or any other charity?
Newsman Tim Morissey raised this issue on his blog "Rifles At Dawn" a while back when he pointed out that we don't need more awareness of issues, we need more activism. That's a valid point, and since I read his post I have tried to, whenever I see posts or Tweets about 'raising awareness', to ask that people donate money, or time, rather than simply retweeting or putting a badge on their blog.
But the Ice Bucket Challenge is a different sort of problem. Should we really be donating all that money to ALS research? Is that a good thing? Should we prioritize our debates based on what catches the public eye, or should we have a serious conversation about where our priorities should be?
There is a thought experiment about Superman that goes something like this: If Superman stopped fighting crime and instead used his superpowers to simply pedal a bicycle constantly at superspeed, thereby powering a generator that could provide free power to people, would he do more good in the world than simply by putting away bad guys? It may be that would be better: by freeing up all the resources that go into providing power and cleaning up the mess of providing power, Superman would allow our society to focus that money on other things like education and poverty prevention and health care (HA! Just kidding, we'd take it all and spend it on Beverly Hills Chihuahua 3D, but it's nice to dream.)
But if there really were a superman, how many people would vote for him to simply sit on an exercycle 24 hours a day rather than soaring through the sky saving the world? Not many, and I bet Superman wouldn't want to do it, either.
So it's a lot easier, and more gratifying, for celebrities to dump water on their head and make the news than it is for a celebrity to quietly donate a couple thousand dollars, as Charlie Sheen did when he bought a therapy dog for a girl paralyzed by an amusement park accident. They'd rather fly above Metropolis than pedal a bike in a back room, and many people would rather retweet the link to a celebrity video than spend 4 hours of their time working at a phone bank or volunteering to help underprivileged kids or the like. By popularizing the idea that retweeting is helping and stunts are charity, things like the Ice Bucket Challenge -- as was argued for KONY 2012 -- oversimplify the issues, make it seem easier to solve problems than it really might be, and give people the impression that they are helping when they're literally doing nothing. Wearing a ribbon to raise awareness doesn't help. And it probably hurts, because while you wear that ribbon, or "LIVESTRONG" bracelet, or whatever, you could be doing something more than loudly trumpeting "I CARE."
Beyond making people think "not actually helping" is actually helping, things like the Ice Bucket Challenge also may be diverting funds from other worthy causes, sucking all the air out of the room. $88,500,000 and counting is a lot of money, and while ALS is a horrible disease (one that kills people in less than 5 years typically), should a cure for ALS be funded to that level?
Here are some facts you should know.
1 in 50,000 people suffer from ALS, on average, according to the ALS website.
Other things that we don't have a cure for include
1 in 3 senior citizens suffers from Alzheimer's or other dementia.
Parkinson's: about 1 in 25 people will get this disease in their lifetime.
1 in about 65 people will suffer from pancreatic cancer at any given time.
Autism: 1 in 88 kids will grow up with this condition.
I could go on, but let's use some examples. Let's say you are at Lambeau Field for the Packers' season opening game.
Also at that game with you are
26,992 people with Alzheimer's or dementia.
3,239 people with Parkinson's.
1,245 people with Pancreatic cancer,
920 kids with autism, and
One person with ALS.
So while you're at that game, why don't you, just before kickoff, go down to the 50 yard line, grab a ref's microphone, take out a comically-oversized check for $88,500,000, and make a big speech like this:
"Hey, everybody, I just wanted to say that we all know there is a disease out there that causes debilitating effects on the person suffering from it as well as imposing significant costs on society and the families of those who struggle with that condition, but thanks to the generosity of people inspired by Matt Lauer, we have been able to raise $88,500,000 and I am here to present that money to help ease the suffering of...
...that one guy over there in seat 32! YAYYYYYYYYYYYYY!"
Because that is what you are doing every time you decide to donate to a charity based on hearing about it because someone famous did something about it. Everytime you call a phone line because Kanye talked about Katrina, everytime you wear your vintage "Live Aid" shirt, every time you retweet a link because Stephen Colbert asked you to do it
(BY THE WAY, Americans who say we can't raise the minimum wage or pay for health care, thanks for listening to Stephen Colbert and funding a bestseller from Hachette Books as well as the US Olympic Speedskating team! USA USA US- screw you)
everytime you do one of those things, you're opting to just give to the guy in seat 32, without even thinking about how best you could actually contribute.
I look forward to them curing ALS in my lifetime, thanks to the Ice Bucket Challenge. Now, if you'll excuse me, I am going to go download another app on my iPad to see if I can't, on my own, find a way to help my two sons with autism get better at social interaction so that they don't become wards of the state when I die and instead could possibly support themselves without constant intervention. If I get time after I'm done with that, I'll probably call my dad, who is beginning this week chemotherapy for cancer that caused him to have his pancreas, spleen, lymph nodes,and parts of his liver surgically removed a few weeks ago. But definitely after that I'm going to get around to dumping water on my head.