Of Ice and Buckets

Just in case you aren’t on Facebook, don’t have teenage children, or haven’t been otherwise plugged into the plight of the white middle class, allow me to introduce you to the ALS Ice Bucket Challenge.

ALS is often called Lou Gehrig‘s Disease, but its official name is Amyotrophic Lateral Sclerosis and is a progressive neurological disease without a cure. It’s a horrorshow that’s taken many lives, including Barbara Brenner, first executive director of Breast Cancer Action.  This current ice bucket challenge was inspired by former baseball player Pete Frates who was diagnosed with ALS at age 27.  (<—– bring tissues)

So this challenge is designed to create awareness about ALS and raise money for ALSA.  It’s hard to argue the success of this campaign.

Of course, I have questions.  Where does the money go?  What programs do ALSA fund? Is this a sustainable campaign? Does is really help contribute to the cure of this disease? What do people intimately affected by this disease think? Does the fun of the ice bucket overwhelm the larger narrative? What are the unintended consequences? For god’s sake, tell me they don’t have a ribbon…

I don’t know the answers to these questions, but I’m a pink ribbon-jaded cynic. I don’t have the time to adequately research and form and opinion, so I decided to live and let live on this.

Then came an unforeseen plot twist.

My local Catholic Archdiocese came out against it, advising faculty who had to sign controversial teaching contracts this school year, not to participate. An email was sent to principals asking them not to encourage students to participate. To clarify, it’s not the dumping of the bucket they object to, it’s the ALSA.

Why? Because some of the research the ALSA funds uses embryonic stem cells, a practice condemned by the Catholic Church.

So began the culture wars on social media.

Look: I wish they hadn’t picked this fight, but it is consistent with their policies. The whole threadbare “one step forward two steps back” criticism is off target. The church is always stepping in the same direction, regardless of whether we agree. On this, embryonic stem cells and ice buckets, I do not agree. I also understand I don’t make the rules, and that the rules haven’t changed in my lifetime.

On the other hand, I wish people who love to hate on the Catholic Church would quit the pile-on and take some time to learn about all the good this huge organization does.

I’m Catholic and my kids attend Catholic schools.  I love them.  I also love my friends and all their messy opinions. And I love my liberal soul mates fighting for a more just and idealistic world.

I am tired of explaining to Catholic friends why my liberal leanings aren’t the spawn of Satan.  I’m also tired of defending the institution that plays an integral role in my family’s life. I live in the gray, knew what I was getting into when I moved my liberal butt to the burbs and joined a conservative Catholic community.  Some day I’ll be rejuvenated for the fight. Today, I’m opting out.

If you can’t beat ’em…



7 thoughts on “Of Ice and Buckets”

  1. I was thinking that this morning. I just saw on FB one of my former colleague’s wife has it. I wish there was some way these funds could make it to families as well. The cost of care for folks with ALS is staggering. It will completely deplete their life savings. Jeff Pearlman wrote a great article on a family friend who has ALS http://www.jeffpearlman.com/the-quaz-qa-adrian-dessi/ I am so aware and thankful that I can move my muscles and type this email. We take so much for granted. I need to be reminded of that.

    1. Thanks Amy. I’ve watched the pink ribbon movement after it matured and one of the problems that came out of it is that it created a sort of normative template for people who’ve had breast cancer. You can be a “warrior” or you can be a “victim” but if you don’t feel like either of those, you’re pushed to the margins. Gayle Sulik has written extensively about that in Pink Ribbon Blues and elsewhere. I worry about that here – the butt kickers like the Frates become the template for how to be with this disease and people who don’t want ice buckets dumped on their heads will be overlooked as somehow less “good” at having ALS. From there, I think the narrative becomes more about the cult of personality and the real mission gets lost.

      And, yes, the families need financial support as well. I tracked my expenses for a year of breast cancer treatment and it was over $500k. I can’t imagine the lifelong expense. Thanks to healthcare reform, at least these people can’t be dropped from insurance or have lifetime caps.

      It’s overwhelming how much work is left to do. But I totally agree with you — I think the real gift in this ice bucket thing is a reminder of how fragile it all is.


    1. Matt, you’re not going to believe what happened after this video. He and Marc were riding their bikes home from soccer practice and Jack hit a puddle and wiped out. He landed on his left elbow and couldn’t move it, so I hauled him to Children’s for x-rays. Fortunately, it’s not broken, but he’s in a sling. I’ll send you a picture. He’s sore but could have been worse!

  2. The Ice Bucket Challenge prompted me to get off my lazy blogging butt and write a post for the first time in 2 months b/c I felt so uncomfortable with how The Challenge reminded me of the Pinkification of breast cancer. Thanks for writing about a different aspect of this Challenge while also asking the tough questions. You said it best: “Does the fun of the ice bucket overwhelm the larger narrative? What are the unintended consequences?”

    1. That’s what I’ve been wondering – are we witnessing the birth of the new pink ribbon movement? And is it happening more quickly because of social media?

      Thanks Renn.

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