There's a big problem with the Ice Bucket Challenge, and it has nothing to do with Pamela Anderson, animal testing or "haters."
Don't get me wrong: I think raising money for ALS research is a great idea. My dad died of ALS when I was 16. One day, he developed a limp and didn't know what it was; he assumed it was some sort of athletic injury. My mom took him to a neurologist after a few months. He went from neurologist to neurologist until they reached a diagnosis: Lou Gehrig's disease. There was very little to be done. He died on a hospice bed less than a year later, wearing a breathing mask, his muscles shrunken and atrophied. He was brilliant and loving till the end. My dad might still be alive if people 10 or 20 years ago had given ALS the attention it's getting now.
Those who don't like the Ice Bucket Challenge usually say it's dumb to film celebrities pouring water on their heads. Why not just write a check? Truth is, the Internet runs on all kinds of dumb videos, not to mention harmful and disturbing ones. Plus, the Challenge has proved the naysayers wrong with its incredible success. In a single day, ALS-research causes raised $10 million, around what they usually raise in a year. The total amount is about to hit $90 million. Impressive!
The problem with the Ice Bucket Challenge is that it opens the door to the worst kind of hypocrisy. The people taking the challenge aren't just comedians and actors; they're also pundits and political candidates. Disturbingly, they are sometimes the same lawmakers who vote in Congress to defund ALS research. Rep. John Dingell (D-Mich.) tweeted last week:
Since 2011, House Republicans have cut NIH funding by billions.
And you thought dumping ice water on your head was cold.
-- John Dingell (@john_dingell) August 20, 2014Rep. Dingell has the right idea. If you cut funding for the National Institutes of Health, you're cutting funding for ALS research. Yes, there are other groups doing research, but they work on a smaller scale than the NIH, which is by far the world's largest source of medical funding. Dingell lists a number of Congressmen who backed a particular bill that hurt the NIH. In reality, there are dozens of initiatives that chip away at funds for medical research -- and legislators who back them.
An obvious example is George W. Bush, who recently took the Ice Bucket Challenge. Bush was well known as president for reducing NIH funding to some of its lowest levels. (If you adjust for inflation, things don't look much better under Obama.) By taking the Challenge, Bush gives the appearance of supporting the cause of scientific research that he posed the biggest obstacle to for years. Strange, right?
Unfortunately, the hypocrisy doesn't end there. Scientific research, and ALS research in particular, isn't about a single institution. It's about a larger pro-science attitude that is lacking in so many parts of the United States, holding our students back from scientific achievement and spreading harmful misinformation. Politicians who don't oppose teaching intelligent design in public-school science class -- from George Bush to Mitt Romney to others too many to name -- do a disservice to ALS research. I'd definitely click to see a list of creationists who have taken the Ice Bucket Challenge.
While we're at it, guess what finding a cure for ALS also involves? Stem cell research. The ALS Association says the funds that go toward stem cell research "mostly" involve adult stem cells. (For the record, when you donate to the ALS Association, you can make sure your money doesn't go toward embryonic stem cells.) But how much are you really helping, if you insist on saying to researchers, "We want you to cure ALS, but not in this one perfectly legal way"? It's like giving money to UNICEF and saying, "I want this to help kids everywhere except Sudan." Not the best way to go about being a humanitarian.
My dad was a humanitarian -- his job helped people on a global scale -- and he was also a humanist: a secular humanist. Over the last few weeks I've wondered, and those who know my family story have asked me, what he would think of the Ice Bucket Challenge. My dad was a quiet guy who didn't care much for celebrities. But he was also a scientist. I think he'd care most about the empirical result: tens of millions of dollars raised for a helpful, scientific cause. (I think he'd also dismiss the folks who say donating this much to ALS research is bad because it doesn't affect that many people. It's nonsensical to try to fund causes according to "rank.")
I know my dad would've loved the Ice Bucket Challenge because it supports scientific research. But he'd also be frustrated -- as I am -- that it gives the political adversaries of scientific research a pretext to disguise their views and pretend their actions haven't made it harder to find a cure, for any disease at all.