THE ICE BUCKET BACKLASH

You've seen the videos all over Facebook and other social media: People participating in The Ice Bucket Challenge to raise money and awareness for ALS (amyotrophic lateral sclerosis, aka Lou Gehrig's Disease). A vast array of my Facebook friends participated, too. 

A few have mentioned making a monetary donation. Fewer still have made an attempt to educate people about ALS in their videos. Most only mention money as a penalty. Most opt for the ice water dousing, though some also donate dollars and get doused. 

It took some time for me to figure out why I felt so uncomfortable when viewing these videos. Then it hit me: This challenge isn't really about ALS at all...
It's a vehicle for folks to shoot cute videos and have some summer fun with their friends on Facebook under the guise of bringing awareness to a disease.

(Does this sound familiar to anyone else in breast cancer land?)

Let's not confuse The Challenge with awareness — or with advocacy. 

When a Facebook friend posted a recent Slate article by Will Oremus entitled "Take the 'No Ice Bucket' Challenge," I read it and had an AH HA moment. The author's words struck a real chord. See if you feel the same way.

"The challenge is simple," says Oremus as he explains the origins of The Challenge (it had nothing to do with ALS initially, by the way): "Either donate $100 to a given cause, or douse yourself with ice, film it, and pass the challenge on to others via social media." 

Then he added: "...it's hard to shake the feeling that, for most of the people posting ice bucket videos of themselves on Facebook, Vine and Instagram, the charity part remains a postscript." 

That's exactly how I was feeling.

"Remember, the way the challenge is set up, the ice-drenching is the alternative to contributing actual money," Oremus says. "Some of the people issuing the challenges have tweaked the rules by asking people to contribute $10 even if they soak themselves. Even so, a lot of the participants are probably spending more money on bagged ice than on ALS research."

Yes! YES! But wait. There's more!

"As for 'raising awareness,' few of the videos I've seen contain any substantive information about the disease, why the money is needed, or how it will be used," he continues. "More than anything else, the ice bucket videos feel like an exercise in raising awareness of one's own zaniness, altruism, and/or attractiveness in a wet T-shirt."

I didn't really notice the wet T-shirts, but what bugged me was that the majority (not all, but many) of the people I saw in the videos peppering my Facebook feed thought they were doing something good by dumping ice water on their heads, nominating their friends to do the same, then NOT donating money to ALS. 

Anyone else see the similarity between the Ice Bucket Challenge and the wearing of pink during October? 

But I digress (as usual). Stay with me here.

After digesting Oremus' article, I decided to repost it on my own Facebook page. I added a simple "I couldn't agree more." I was met with a speedy reply by a childhood friend whose entire family did The Challenge. 

"The campaign is working," she posted to my wall, quoting from the very article I posted that it was raising a lot of money. "Why find fault in it?" she asked.

Then another childhood pal backed her up: "I think either way is OK. A little donation, a little ice water and a lot of entertainment. Let's do both." My friend replied to him: "Exactly!" 

Now I felt conflicted. Is that what I'm doing, finding fault with something that is obviously raising a lot of money for a good cause? Am I that jaded? Was I misguided in posting Oremus' article? I wasn't going to respond. (Really, I wasn't.) I was just going to let it lie.

Except I couldn't.

Instead, I sat with it for a while. And then I did a little research. 

A few hours later, here's what I wrote on my Facebook page: 

"It's been fun watching dozens of my FB friends getting doused with ice water this week. But each time I watched a video, I had a nagging feeling, for a couple of reasons: Awareness alone does not stop disease. (I know, call me Debbie Downer.) And a $100 donation in lieu of getting doused — that's a lot of dough. So yes, most people are opting to make cool (pun intended) videos instead of donating money. I get it. And the videos are entertaining. And ALS is in the spotlight, and they are pleased about that.  

"Unfortunately, the Facebook link to this ice bucket challenge doesn’t mention donating any money at all. The good news? As [my unmentioned friend] mentions above, ALS funding has increased dramatically since this online challenge began two weeks ago. So what have we learned about ALS through this challenge? (Pause.) Here’s one tidbit: 'More work is needed to conclusively determine what genetics and/or environment factors contribute to developing ALS. It is known, however, that military veterans, particularly those deployed during the Gulf War, are approximately twice as likely to develop ALS.' So I am grateful for this Facebook ice challenge, because I would not have researched ALS at all otherwise. 

"I guess that's my point. Scientific research costs money. ALSA needs money. Let's see folks donating whatever they can afford, even $1, while also making ice-bucket videos. To anyone about to do the challenge: I challenge you to make a donation, before you make a video, to make a difference. To learn more about ALS, see ALSA.org or go to NIH."

The response to my little Facebook rant? Crickets.

I heard from two close friends who also took The Challenge; both explained that they had donated and done The Challenge. That's cool, I thought.

But no one else weighted in. 

Then this morning I read Emily Steel's article about The Challenge in the New York Times — and saw myself reflected in that one, too. First, Steel shares some impressive stats: More than 1.2 million ice bucket videos have been posted on Facebook between August 1-13, 2014; The Challenge has been mentioned on Twitter more than 2.2 million times since July 29, 2014; and as of August 18, 2014, the ALS Association has received over $15.6 million in donations.

All good. Really, really good. Right?

But then I hit the paragraph that had me nodding my head all over again. Steel writes, "There has been a backlash. Some have criticized the campaign for so-called slacktivism, where people click and post online for social causes with little impact on the actual cause." YES, I said to myself, that's exactly what I am feeling! The article then went on to quote Arielle Pardes, a writer for Vice: "There are a lot of things wrong with the Ice Bucket Challenge, but the most annoying is that it is basically narcissism masked as altruism." Ummm, yeah, that kinda sums it up. 

And doesn't that also sum up what happens during "Pinktober"? (Sorry, again I digress.)

This afternoon I read a Time.com article written last week by Jacob Davidson, a man whose father died from ALS. "Initially, I was overjoyed all this attention was now focused on ending a disease that had caused me so much pain," Davidson says. "But when I looked closer, I became uneasy.... Most of its participants, including [Ethel] Kennedy and Matt Lauer, didn't even mention the disease at all." 

Davidson goes on to explore the rules of The Challenge, according to the ALS Association:
"The challenge involves people getting doused with buckets of ice water on video, posting that video to social media, then nominating others to do the same. Those who refuse to take the challenge are asked to make a donation to the ALS charity of their choice."

No mention of the $100.

But Davidson understands the difference between action and awareness. "That means everyone you've ever seen dump water on themselves, per the rules, is not asked to donate. They may choose to, but the viral nature of this fad appears centered around an aversion to giving money."

Bingo.

"Ice Bucket defenders would argue this is all just meant to 'raise awareness,' meaning those who participate are still doing good without donating," Davidson continues. "ALS needs all the awareness it can get, but somehow I doubt many learned a whole lot from contextless tweets of wet celebs smiling and laughing... Maybe people could dump ice water on friends who haven't donated as a goofy way of encouraging others to give, or dump water on themselves before promising to donate. Maybe helping ALS could at least have been presented as something other than a consolation prize."

Amen.

This all reminds me rather eerily of how I feel during The Hunt for Pink October. When people buy pink things thinking they are "raising awareness" — often never knowing where the money goes or what it's used for or if money is even donated — yet feel all warm and fuzzy thinking they are helping put an end to cancer.

None of this puts an end to any of it. Not to ALS, not to cancer. 

One of the main reasons I still blog (albeit infrequently these days) is because it gives my breast cancer advocacy a place and a voice. I simply couldn't watch any more ice videos without connecting the dots of that so-called awareness campaign to the pinking of October. We can do better. We must do better. ALS is incurable. So is cancer.

Speaking of doing it better, Will Oremus is encouraging everyone to take the #noicebucketchallenge:

1) Do NOT fetch a bucket, fill it with ice, or dump it on your head.
2) Do NOT film yourself or post anything on social media.
3) Just DONATE the damn money, whether to the ALS Association or to some other charity of your choice. And if it’s an organization you really believe in, feel free to politely encourage your friends and family to do the same.

Jacob Davidson — the man who lost his dad to ALS — sums it up best: "In an age where hashtag activism and information-free awareness campaigns are becoming more and more common, we should be very conscious of how to make viral trends as useful as possible."

Let's remember this during upcoming Pinktober. Let's not let it lie.

PS: How do YOU feel about The Ice Bucket Challenge?

AUGUST 19, 2014 UPDATE: Time.com posted an article this morning by Bill Saporito: "The Perks — and Pitfalls — of Using Gimmicks to Raise Awareness" (find it beneath the auto-playing video). According to Saporito, The Challenge could change fundraising forever. "The Ice Bucket Challenge became a virtual, and virtually frictionless, cost-free way to raise funds," he says. "Keep in mind that many charities can spend 50% of their incomes on fundraising." (In the pinkified world of breast cancer fundraising, we know all too well how few donated dollars (or cents, in some cases) make it into fueling actual research, don't we?) But back to The Challenge. Margaret Anderson, executive director of FasterCures, a think-tank arm of the Milken Institute, is also quoted in Saporito's article. “Nobody knows what the formula is," Anderson says. "From [FasterCure's] vantage point, we think about these issues all of the time.” 

"In the case of ALS," Saporito concludes, "the benefit of The Ice Bucket Challenge is that it might give us a chance to find out." Time will tell. Here's hoping.