Of Ice Buckets and Naysayers: Why I Chose to Do the ALS #IceBucketChallenge

by Ken Mueller on August 18, 2014 · 7 comments

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ice bucket challenge fb user profile 1 Of Ice Buckets and Naysayers: Why I Chose to Do the ALS #IceBucketChallengeIt’s amazing how you can do something good online and get hammered for it.

Last week a friend of mine challenged me to do the ALS Ice Bucket Challenge, a grass roots video effort aimed at raising awareness and funds for research to fight ALS, more popularly known as Lou Gehrig’s Disease. I was a bit hesitant at first, because I know quite a few of my friends have been critical of the water dumping. But as I thought through it, and as I read what my old college classmate Paul Trask and his family were sharing online, I decided to go ahead anyway. I accepted the challenge, posted my video, and challenged a few other folks. And the negativity continued. The thinking of the naysayers is this:

The video is silly. Why not just give. If everyone who dumped water on their own heads gave, then we’d raise a lot of money. Dumping water on your head is the easy way out.

Honestly, I don’t get the hate. I don’t get the confusion. I don’t get the questioning. Especially when it comes from people who I respect, and who I know are loving, giving people. I can be as cynical as the next guy, but at times I think we go way too far in our questioning of everything, like a recent article from the Huffington Post that says those who take the challenge are actually hurting the cause

When I went into this, I didn’t do this lightly. As I mentioned before, I checked in on Facebook to see the thoughts of my classmate Paul and his family. You see, Paul has been battling ALS for about five years now, and I’ve been following his physical decline on Facebook. He is pretty much confined to a wheelchair, can’t really speak, and his breathing has been reduced greatly. He requires a lot of care. And yet every picture I see of him online, he has a huge smile. And his family is supporting the ice bucket challenge. They are a family that has a lot of expenses due to Paul’s condition, and I want to do what I can to help.

If you’re anything like me, your Facebook feed is full of videos of your friends taking the ice bucket challenge. You can’t avoid them. It’s the viral nature of Facebook, Youtube, hashtags, and social media in general. THAT is why this is important. For many of you, ALS wasn’t even a blip on your radar before this. Now you are aware of it. Now you know that you have friends affected by this crippling and deadly disease. And now it’s up to you. For those who say, “Stop with the videos and just give,” let me ask you four questions.

1) If people just gave quietly, how would you and others even know about ALS?

2) Have you given? I’m guessing a lot of you might not even have given, some out of a reaction against these videos. At least those who are filming them are doing something, whether they give or not.

3) What’s more effective? Grabbing people’s attention this way, or just having people post “I just gave to ALS, you should give, too.” To me, the latter is not very compelling, and could very easily seem arrogant and braggadocios.

3) If you had a disease, or even had a Kickstarter campaign for your latest creative endeavor, and you needed funds, and if I couldn’t afford to give, would you want me to stay silent? Or would you want me to share your efforts to those who might be able to give?

You see, what’s really the issue here is something that has been called “slacktivism,” a phrase that generally means we go the easy route and click like and share buttons instead of giving. But that makes some rather faulty assumptions. First off, how do you know these folks aren’t giving? It’s not always an either/or. Second, it underestimates the power of social media, and misunderstands one of the main principles of how nonprofit organizations function.

Ask anyone at just about any nonprofit, and they’ll tell you that awareness is key. For many, the awareness is more important than the money that is given, because without awareness, no money will be given. For ALS, awareness is at an all time high, and awareness begets giving. As of Sunday, giving to ALS over the previous three weeks was about $13.3 million. During the same period the year before, it was only $1.7 million. That’s a significant increase, and it’s not over yet. The movement is growing.

Add to this that it has been a very high profile campaign. An organization like the ALS Association probably can’t afford to spend a lot of money to get even one celebrity spokesperson. But with this campaign, they’ve gotten hundreds of them…for free. From Bill Gates and Mark Zuckerberg to Conan O’Brien and Lebron James. Many entertainers, athletes, politicians, and others, have participated by filming and posting their rather entertaining videos. You can’t buy that kind of publicity. And, again, don’t assume that these people aren’t giving.

Plus, beyond the viral videos, just about every major network or media outlet has written a story about the phenomenon.

Awareness is key.

And here’s the other reason why I have no problem with slacktivism and this campaign: I can’t give to every nonprofit or cause out there. Not a day goes by that I’m not made aware of some very worthy cause that could use my money. But I can’t give to them all. I choose a select few to give to financially, but it doesn’t take long before my wallet is empty.

But what I can do is help spread the word. Between my blog, Facebook, Twitter, and other social channels, I have access to thousands of friends, family, and other followers. Plus my efforts can find their way to Google and the other search engines. So while I can’t always give money, I can give access to my social networks as an influencer of sorts. In fact, many of the causes that I have given to, first came on my radar as the result of others posting about them on Facebook. I can do the same.

Awareness is key.

While I might not be able to give, I might have friends who can and will give. And as Barbara Newhouse, the President and CEO of the ALS Association has stated:

Without a doubt, the popularity of the Ice Bucket Challenge, the social media phenomenon that continues to sweep the nation, has encouraged tens of thousands of Americans not only to douse themselves with ice water but also to open their pocketbooks and to donate to the fight against ALS.

This isn’t some cute ploy. It’s something that started small and truly went viral, and was then embraced by the organization it benefits. By most accounts, the ice bucket challenge was started by a former college baseball player who has ALS, and it took off. It wasn’t the product of some board room brainstorming session, or some highly paid ad agency. It’s a grass roots effort that has gone viral.

So when I did my video, I also got other businesses, besides my own, involved. Some of them did the challenge, some donated, and some did both.

Now back to my college classmate Paul. On Sunday I saw a video online of what appeared to be 50 or 60 people out in Paul’s driveway, all dumping ice water over their heads, while Paul watched and smiled. They did this as a show of support for Paul and his battle. I’ve also seen pictures of Paul on Facebook as he is enjoying watching all of the Ice Bucket Challenge videos online.

paul trask Of Ice Buckets and Naysayers: Why I Chose to Do the ALS #IceBucketChallenge

This is important to Paul. It’s important to all who have been touched by this debilitating, terminal disease. If those suffering from ALS see the value in this, why shouldn’t the rest of us?

For Paul, his journey with ALS has meant high medical bills and expenses. Paul and his family currently pay about $20,000 a year on insurance and medical supplies. Additionally, the state of Pennsylvania now mandates that Paul’s family has to pay another $24,ooo each year toward his care. I can’t imagine having to come up with $44,000 a year for something like this, on top of all the other daily expenses we all face. Here is what Paul’s wife Debbie had to say to me about ALS and the campaign:

ALS is an all encompassing disease. It not only effects the patient’s body, but all aspects of life for him and his family. Just to see how many local people stepped up to the plate and physically showed their support was SOOO touching to all of us. ALS isolates not only Paul, but me and our children. No one fully understands the stress, the fear, the financial burden the psychological impact, etc. that this disease brings.

This whole process has brought not only awareness of ALS to our friends and community but awareness about our family and Paul. This road is a very lonely road at times. Not only is Paul not able to get out and do things and see people, but we as a family are also very limited. Paul needs 24 hour care. Someone must always be here and the nurse usually needs help at times. We always have a stranger in the house. Our life is no longer our own and is dictated by doctors, medications, nurses, volunteers, lack of nurses and volunteers too. People can not understand the full impact of a disease unless they put a face to it. Hopefully this will.

But I am forever thankful that Paul handles it with courage and grace, I could not do this if he did not. And why not have fun and challenge others to help? I have received over a $1000.00 this week because of the challenge and countless others who have donated to the ALS association. AND they had fun doing it!

So here’s my challenge to you. Rather than complaining, criticizing, and joining the chorus of naysayers, why not do something about it. I’d like to urge you to do two things:

1. Give. If you want to complain about folks not giving, why not give something yourself? You can donate to the ALS Association, or if you want to really see the results of your giving and make it personal, help Paul’s family pay their medical expenses.  I believe you could help them meet their goal within hours if you all gave.

2. Share. I don’t care whether you dump water on your head, write a blog post, or just like, share, and comment on the videos of your friends. But by sharing in some way, any way, you are helping. You are helping build awareness about ALS, and you are helping by perhaps connecting the dots between the disease and someone who might be willing to give.

Think twice before you criticize the idea of the Ice Bucket Challenge.

Are there some who are doing this just to have fun? Of course.

But for all of those, there are plenty who take this seriously, and might also be giving, and are helping to build awareness. Don’t be a naysayer and a part of the problem. Be a part of the solution.

What are you doing to help?

 

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7 comments
Katrina B
Katrina B

Hi Ken. I am one of Paul's nurses. He is an amazing man with an equally amazing family. People who are confused about what the ice bucket challenge is about obviously do not know someone with ALS. I am so glad that he not only can smile but that he want to smile. I have been taking care of him for over two years now and the only time I see him cry is when we watch an awards show or undercover boss. I have learned so much from him. .I guess he is still teaching

MAXMike
MAXMike

One word.... Awesome!  Spot on Ken!  Mike with MAXSolutions

magriebler
magriebler

I too have been puzzled by the backlash and think you hit the nail on the head. If you don't want to watch the videos, don't. Just make a donation, for crying out loud, and shut up. And even the people who are doing the challenge to be silly are contributing to a national awareness campaign and making a difference. Bravo! 


As for me, I've enjoyed watching every video and shuddering with each overturned bucket of ice. (Notice how everyone says some version of "That was cold?" I love that.)  Am I thinking more about ALS now? You bet I am. Have I been talking with others about the people I know who have had the disease? Of course. Have I made a donation? Absolutely. We are talking now about a particularly cruel disease that hasn't gotten much press coverage to date. And that's a victory of some kind, in my opinion.

annelizhannan
annelizhannan

Bravo Ken. This recent campaign has brought more awareness and dollars for research of ALS then I have ever seen in the twenty years since my brother succumbed to this cruel disease that robs one of body yet leaves the mind acute to suffer the pain. I count myself among the fortunate who continue to have the ability to smile at each video and thankful for any and all who have either demonstrated effort to raise the awareness through the ice bucket challenge, commenting on others efforts to keep it front of mind or reaching into their pockets.  Thank you for your contribution. 

KenMueller
KenMueller moderator

@magriebler Thanks, Marieanne, and thanks for the donation to a great cause. I know Paul's family will appreciate it.

KenMueller
KenMueller moderator

@annelizhannan Thanks for your comment. I'm amazed at how little I know about this disease, and yet I keep finding people I know who have been directly affected by it. I'm so glad we can make people more aware.

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