During the first two weeks after the killing of Michael Brown in Ferguson, Missouri, as I compulsively filled my Facebook feed with nothing but stories related to those events, my home page became a locust-like infestation of—wait for it—people taking the Ice Bucket Challenge. The dissonance was somewhat traumatic for me for two reasons.
First was the near-complete absence of any dialogue or reflection about what was happening in that Missouri suburb I'd never heard of. And this wasn't just tumbleweeds blowing around my feed. There was so little similarity between Facebook and what was unfolding on Twitter that widespread comparisons of the platforms called into question various Facebook algorithms that decide who sees what. This was too easy on Facebook users who, if their mental houses were in proper order, should have posted about police brutality against blacks with the same despondency and grief they dug up for Robin Williams. There should be enough humanity to go all around.
But the second reason for my inner conflict came from the fact that, in my day job, I'm part of a team working to find a cure for ALS, a disease that is non-discriminating in its ruthlessness. Though my daily tasks run the regulatory gamut, I do at times work directly and, by default, intimately with patients and their families. Because of this vantage point, people began asking me for my thoughts on the trendy, in-the-moment-silly-and-lighthearted Ice Bucket Challenge that belies the darker truths of what happens when your motor neurons die.
When I was finally able to turn my focus to the fundraiser, I didn't have high hopes for it. Either dump water or write a check as a strategy seemed misguided. Why isn't it both? I thought. In a blog post at Time.com, Jacob Davidson, whose father died from ALS, wrote that "the viral nature of this fad appears centered around an aversion to giving to money." And while some seemed to be doing it just for laughs, nobody captured the essence of the gimmick in its most superficial form as well as a smug Matt Lauer, who spent an entire six minutes building up to his dousing without so much as a mention of charity, donating or ALS. I'm convinced the man is dead inside.
Fortunately, Jimmy Fallon and The Roots changed my attitude by getting everything right. Fallon repeatedly mentioned ALS and the ALS Association (ALSA), posted ALSA's website on the screen and decided to listen to a member of his band, who—when Fallon explained to his audience the either / or thing—said, "Nah, nah, man. I think we should do both."
Not either / or, but both. Oh, humanity, I love thee.
Of course, you can't get anything past certain water conservationists, who came running out of their houses with their hair on fire. (No dumping buckets on them; they're against that.)
I'm for water conservation, too. But I'd like to know whether these water warriors—incensed as they are by the Ice Bucket Challenge—are also fighting alongside the United Nations on behalf of the roughly 19,000 poor (largely black) residents in Detroit who have had their water cut off in recent months due to outstanding bills of $150 or more. This, even as the top 40 commercial and industrial businesses in the city collectively owe back water bills in the amount of $9.5 million; Chrysler and other companies go right on businessing as their water flows. Also: golf courses.
Incidentally, someone did add up how much water has been wasted during the last six or so weeks. At first, it seems like an astonishingly large amount, approximately equivalent to 19,000 homes' daily water usage—which, oddly enough, is the same amount of one day's worth in the homes of the no-longer-served Detroiters. Some might call that a wash. For this calculation of wasted ice-bucket water to be truly meaningful, it must be compared with the corporate water waste around the country. And in that light, the ALS fundraising water usage is a drop in the proverbial bucket.
As of Aug. 27, ALSA had received $94.3 million, compared with $2.7 million during the same time last year. That's an unprecedented sum of money to flow into an organization in such a short period of time. Detractors are already outraged by the amount of ALSA's funds dedicated to research (27 percent), how much the CEO makes (six figures) and whether the organization is prepared to handle such large sums of fast money.
Talented CEOs have to be paid, and these critics fail to highlight that 79 percent of ALSA's annual expenditures facilitate their three-pronged mission: Research is one part of this, but so, too, are care service for patient quality of life and patient advocacy. The necessity of those pieces cannot be overstated, especially because there is currently no cure. Furthermore, ALSA CEO Barbara Newhouse has acknowledged the organization's effort to be purposeful in determining how the generous donations will be used, and with more money, more research can, and likely will, be subsidized.
Hopefully, ALSA is figuring out how to repeat this phenomenon again in the future. Because what people suffering from ALS desperately need beyond support and resources is a scientific breakthrough. Each time a person lifts that ugly orange Home Depot bucket in the air and tips it to let all that precious water pour over their heads, patients and family members are given hope, something that, even when we tap into our humanity—turning our gaze to charity or racial justice or both—can be pretty tough to come by.