Why I Won’t Take The Ice Bucket Challenge

I’ve successfully dodged it for two weeks but now I’ve been called out by five different people to take the Ice Bucket Challenge. And I won’t take it. But because of the social media attention this challenge brings, and because the five people who challenged me are all involved with Merrimack Hall as volunteers, I feel pressured to explain why.

My daughter, Emma, who is the Development Director for Merrimack Hall, said last week, “I sure would like to meet the national Development Director for ALS and shake his/her hand…did they ever hit the fundraising jackpot!” Boy, did they! I am happy for the ALS Society that a gimmick they picked up from Matt Lauer two years ago has gone viral and has raised so much money and awareness for their cause. And sure, I’m a bit envious of their success because I spend all of my time…as a volunteer…trying to raise enough money to provide the program of arts education that I created to over 500 children and adults with special needs.

More power to ’em…it’s really hard to raise money these days and they’ve knocked this one out of the park.

I’ve read lots of articles that slam this Ice Bucket Challenge and the ALS Society for a wide variety of things such as their use of stem cells in their research, their use of animals in their research and drug development, the fact that ALS affects a comparatively low number of people (statistics say somewhere around 20,000 people worldwide have ALS, as opposed to the 584,000+ people who die of cancer each year). Other articles have criticized the challenge for the damage it is doing to overall charitable giving, like this one:


The law of “charitable cannibalism” says that every dollar donated to one organization is a dollar lost to another, which makes me wonder if we are going to feel the effects of the Ice Bucket Challenge this holiday season, when folks who donated because they wanted to be a part of the social media frenzy don’t have any more charitable dollars left to donate this year and organizations like Christmas Charities feel the pinch, or when there isn’t enough food donated for Thanksgiving food drives because people blew their charitable giving budget with one dump of a bucket.

I thought this thing was getting out of hand when I saw kindergarten kids dumping ice water on their heads. Is a 6-year-old really going to write a check to the ALS Society or understand what their parents are doing whey they write theirs? Or are they just excited to put a silly video on mom’s Facebook page? But I decided it was completely out of hand when people started challenging me. Here’s why…

If you know me well enough to challenge me to dump ice water on my head, then you know me well enough to know this…Alan and I created a non-profit in 2006 and have spent the past eight years working as volunteers and donors on its behalf. You should also know that I’m involved in an aggressive campaign of my own – and so is my staff – to raise the $1 million a year that it costs to provide our programs. So, if you know this about me, why would you throw down the gauntlet and put me on the spot on Facebook? Why would I would be willing to use my substantial social media network to help raise money and awareness for a cause other than Merrimack Hall and The Johnny Stallings Arts Program?

Alan and I decided to consolidate our charitable giving in 2006 but we still support many worthy causes to the greatest extent we can…but we give this support quietly and anonymously. Like two weeks ago, when I donated $250 to the American Cancer Society for their annual gala in honor of a friend. Or last year, when I donated $250 to ALS Society in honor of my friend’s son, who died of ALS. So far this year, I’ve donated money to 13 organizations besides Merrimack Hall and will continue to support causes that matter to me with my money and my time…but I won’t do it publicly because that would dilute my ability to raise money for my own organization.

One of the five people who challenged me actually dumped the water on her head in honor of our program, which is so nice and so generous. But I’ve seen the social media backlash when others have done this over the past two weeks…people who have advocated for other charities besides ALS and have then been publicly shamed for “hijacking” an idea that started two years ago and wasn’t initially created to benefit ALS but to benefit charitable giving in general. I don’t want that backlash to come onto my organization and tarnish people’s willingness to donate to us in the future.

I feel that I should use my bully pulpit to raise awareness on behalf of the 400,000 people in the US who have Down syndrome…on behalf of the 1 in 88 children who will receive an autism spectrum diagnosis this year…on behalf of the 20% of Madison County residents who have physical or intellectual disabilities. I will advocate for their inclusion in our communities, for their quality of life, for their health care and education, and for the creation of jobs for them.

I hope that all those people who have done the Ice Bucket Challenge will remember to continue their charitable giving in the future – to whatever organization or cause speaks to them. The challenge shouldn’t be to see how many “likes” you can get…the real challenge to each of us should be that we are good stewards of what we have, that we make informed decisions about how to allocate our charitable giving and that we raise our children in homes where sharing with others is a core value.

9 thoughts on “Why I Won’t Take The Ice Bucket Challenge

    • Thank you for your support Marion! I felt really bad when people kept asking me to do the challenge and didn’t want to just keep ignoring their requests! Plus, every time someone “tapped” me in their video, other people were “liking” it so I worried that I would seem uncaring about their cause. I do care about ALS…I just care more about Merrimack Hall and JSAP! Your support means so much to us – and watch for a Project UP performance at this year’s Buddy Walk!

  1. Bravo, you and Alan are loved by many for what you have done and continue to do. 🙂 You know my grand daughter loves you. One of my nieces posted a spoof parody of the “Ice Bucket Challenge” the individual basically saying a number of people doing the challenge are doing so to show off and probably not even making a contribution to ALS. I agree it’s a good cause, but the challenge has served it’s purpose.

  2. Or in honor of the estimated 166,000 people living with Spina Bifida in the United States. 😉 Each of these like a snowflake, no two exactly alike. ❤

  3. Well stated Debra! I am lucky, in that no one has challenged me. I too would have declined. Abbey and I are busy spreading the JSAP message. Today she will give a speech with the Jackson County Director of Special Education at the Kiwanis Club Lunch Meeting. Of course she will be telling of her involvement in the JSAP program and hopefully helping to raise awareness and funding. Can’t wait to start dancing again in September.

  4. Well said. I wouldn’t do the challenge if someone asked me to. The reason is for almost the same as yours. We have a severely autistic son who is 10 non verbal and in pull ups. I am glad to see the ice bucket has gone well but I believe it’s time to end. You’re right in your thoughts about other charities and the Holidays. Hopefully, we are wrong. I just wish some of the ice bucket money could go to local charities that would actually help families that are in need of help. Money is tight these days with all the budget cuts to the special need population.

  5. Don’t know you at all, but thank you for the work you are doing.And for an intelligent commentary on this situation.

    • Thank you Carol, for taking the time to read my post and to comment. I’m happy that a good cause is benefitting from all this charitable giving…I just hope people will continue to give in the future…to any cause that speaks to them!

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