Fuck the ALS Ice Bucket Challenge

[updated Aug. 23 2014]

This is personal for me, so excuse the angry tone and forgive me putting this on a blog otherwise filled with irregular, trite nonsense (or don’t, I don’t really care).

dad 1My father passed away from ALS (amyotrophic lateral sclerosis, otherwise known in the States as Lou Gehrig’s Disease). Any terminal illness is in its very nature horrifying, but ALS is particularly cruel in that it destroys your body while doing nothing to your cognitive abilities, so you literally become trapped in your own body. Over the course of three brutal years, my brothers, my mother, and I watched a man who earned his living as a carpenter, handy man, fixer-of-everything, a man who sat behind his drum set every chance he could, a man who could talk your ears off for hours, slowly degrade until he could no longer speak at all, let alone move even a finger. At first, he had trouble walking and was given crutches. We had to drive him to doctor’s appointments because he could no longer drive – a man who spent uncountable hours working on his car, who took pride in driving and teaching me and my brothers to drive.bob telson Then he needed a wheelchair. Then he couldn’t move the wheelchair himself. A home health aid was brought in to help take care of him since he could no longer even get in and out of bed on his own. The medication he was on required an IV and we had to administer his daily cocktail of medicine ourselves because the nursing service wouldn’t do it. When he could no longer speak, we communicated using a board with letters on it. We cleaned him up when he couldn’t make it to the bathroom on time; we fed him blended up food because it was the only way he could eat; we cut his nails, trimmed his hair. This is only the tip of the iceberg. On October 3rd, 2006, at the age of 53, he died of asphyxiation, due to ALS, in a hospital bed in the middle of the night, alone.

The picture I hope I’m painting for you is not a fun one. It is ugly. It is terrifying. It is sad. It should be. It is not a fucking photo op of some asshole tech billionaire getting ice poured over their head. For what? ALS awareness? What the fuck is that? This isn’t the flu, being aware of ALS doesn’t mean people are less likely to get it. You think because more idiots are aware of the disease that somehow makes it better for the people who have it? Granted, the thought of Mark Zuckerberg cold and uncomfortable for even a split second could give anyone a brief moment of joy, but really? You want to be aware of what ALS is? Go read my last paragraph again. Go look up the stories of other people who have, or had, the disease. Fucking hell, you could even go read Tuesdays with Morrie. Some celebrity dousing themselves in ice has about as much to do with ALS as them taking a shit onto a plate (#PlateShitChallenge!)

This is not ALS:

BvE0776CcAES0cY

This is ALS:

dad 3

 

The ALS Association claims it has raised $2.5 million more because of the campaign. Great. I’m all for an increase in donations, but the assholes getting their names splashed all over the news for pouring cold water over themselves make more than that in a day.

Here’s an idea: Instead of trivializing a horrific disease with an absurd marketing stunt/popularity contest, let’s have all these wealthy ‘philanthropists’ just donate a couple million each to ALS research directly and cut the self-serving bullshit.


UPDATE Aug. 23, 2014: First, thanks to everyone who’s read my post. I wasn’t really expecting it to get the audience it has received.
I’ve gotten a lot of comments on this post, on Twitter, on Facebook, etc from people who feel the need to defend the Ice Bucket Challenge. Everyone is entitled to their opinion, and I understand that there are other families who have suffered through ALS that have no problem with the Challenge, but I have a few points I’d like to respond to and then I’m done.

  • The ALSA now says it has raised over $60 million. This is great. It doesn’t change anything else about what I’ve written in my original post.
  • Further, I can virtually guarantee that other ‘ALS families’ that support the Ice Bucket Challenge would support a different fundraising campaign that was more dignified and did more to advocate for the disease.
  • I’ve had people tell me that I’m “missing the whole point of the Challenge”. First, if I’m missing the point of the challenge, can you imagine how many people who don’t know anything about ALS are missing the point? And what is the point? To raise money and ‘increase awareness’? What does that mean? So now you know that there’s yet another horrible, terminal disease out there. Maybe you donated $100. Are you going to donate again next year? Now that you are aware of ALS, are you going to fight for stem cell research, better funding for the NIH? Will you go spend time with someone who is suffering from the disease and could use a friend a lot more than they could use videos of someone being drenched in ice water? In a few years, if someone mentions ALS, how many people are going to think of ice buckets instead of a debilitating and deadly illness? Being aware of ALS is literally the least you could do. I genuinely respect the ALSA and their work, but in this case I think they’ve made a big mistake in not tying real information and advocacy into a fundraising campaign. They chose to make a fun game that could easily go viral, a publicity stunt that smacks of corporate marketing strategies, rather than something that has any heart, empathy, or dignity behind it.
  • Before you defend the Ice Bucket Challenge, are you doing it because you genuinely think it’s the best way to advocate for and help fight ALS? Or are you doing it because you’re mad that your fun got spoiled?
  • tl;dr The ends don’t justify the means.

And finally, I’m turning off comments on the post and rejecting a few particularly nasty ones that have already been written. I’m not interested in debating random people on the Internet (nor do I have the time to respond to each comment), I don’t appreciate being told to ‘get help’, therapy, etc etc (you don’t know me – what a strange thing to tell someone), and *gasp* I don’t feel like defending myself for being angry about something I care about. I cursed a bit, I’m not some scary monster. Thank you to everyone who commented positively and respectfully.


Another brief update (Sept. 4, 2014):

Here’s another like-minded perspective from someone who’s battling ALS right now. If you’re really interested in ALS awareness, I encourage you to read through Anja’s blog.

My brother Noah and I recorded an episode of our weekly podcast yesterday and touched on the challenge. I addressed some more of the arguments I’ve heard in it.

22 thoughts on “Fuck the ALS Ice Bucket Challenge

  1. I completely agree with you. What bothers me about this “challenge” is that people aren’t doing it because they in any way care about ALS or those with ALS, it’s a gimmick to get them more likes on facebook and to get more people to stare at them doing something stupid. If people really cared about ALS, they would go ahead and as you put it, just pony up the cash to the cause.

    I personally have no investment in ALS. I’ve personally never lost someone to ALS, and though I sympathize with those with the disease, I don’t have a personal stake in it. But I’ve lost people to cancer. Cancer is my cause. Am I going to dump an ice bucket on my head for cancer? Of course not. But it’s a cause I care about, and when I’m able, I give money. And this is how people should approach these charities. There should be a reason you are personally invested in helping these people, because otherwise, you’ve turned a cause that’s about someone else into a publicity stunt for yourself.

  2. I agree 100%. what the fuck does pouring a bucket of ice cold water have anything to do with helping als. it’s literally the dumbest thing i have ever seen.

  3. i came looking for information as to what the als challenge is, thank you for the article you wrote, i hope you are at peace with your fathers passing.

    you’re right about the money aspect, if the wealthy want it so bad, they have more than enough money to do it, their lord jesus even said to use their money for this very purpose. tsk tsk.

    they get the public to fund the cures, then once the cure is present, turn around and sell it back for a fortune and people happily BUY IT.

    uranus bless america.

  4. thank you for this. True charity means giving with NO strings attached, not “raising awareness” while earning praise and recognition in such a way that the focus now becomes on how helpful you are vs.the people actually in need

  5. I read your blog re: ALS. Bravo! I cared for as a CNA in a nursing home. Actually, I wasn’t certified yet, but worked there making beds and pouring water or ice chips. I was not allowed to give them water or ice unless a nurse was present. Some people on Respirators couldn’t have anything per mouth due to obvious reasons. There was a man who wrote on a chalkboard. He was a wonderful person and I watched him loose the ability to write. I would cry uncontrollably because I had no idea that this illness existed and that people were all alone, frantic and anxious because they couldn’t breathe without frequent aspiration and cleaning of the respirator bottle. It was HORRIBLE. I will never forget the brave man he was and I think instead of pouring water over their heads these “well-meaning” people would score high in my book if they toured a nursing home or hospital’s ALS unit. I think that would mean more to the patient and to society as a whole to show how much they care. Just hold their hand or talk to them, that says more than what is going on now. These people can THINK, HERE and FEEL. Wake up America! SMH

  6. I am truly sorry for your loss. Having lost my aunt to ALS I understand your anger and upset at the ice bucket challenge,however 15 years ago when I would say my aunt has ALS folks looked at me like I had 2 heads. Though I don’t get the ice thing at least people are now talking about ALS and it is finely a real disease to people and not that one no one remembers except for a movie about a football player.2 out of 100000 people will have ALS and most folks it seems did not know it’s name till a month ago, and that makes me more sad.So as I write this post I am beginning to think if throwing a bucket or 100 of them over my head could help raise money to work toward care or cure for this evil killer bring me the buckets.I miss Adele my aunt whose life was gone long before her heart stopped.Find peace friend.

  7. Some people never knew what ALS was and for if not for this fantastic challenge, it still would be an unknown disease, one people don’t want to know about. But this challenge has put it in our face. My prayer is that every person who completes the challenge, sends a good sized check to ALS research. I’m not doing the challenge but I have seen so many challenges on line that I will send my check. This is a disease that has hit many, some of my patients, and I would like to think that this disease is conquered in my lifetime, too many wonderful people have been its victims. I am sorry that you lost your dad to this terrible disease. Perhaps all these challenges will help eliminate it!! May you find your peace. Chaplain Liz

  8. Totally agreed…..I think this challenge diminishes what ALS truly is…….people keep saying how much money has been raised, and everybit matters, but with the wildfire of these challenges, there should be 3x’s as much raised which means most people aren’t even followin through with the important part….. But they sure got their videos posted on social media, calling out 75ppl per….all the while giggling about how cold the water is….

  9. Assalamu alaykum,
    May Allah give you the power to endure and guide your father on his way to heaven.

    Here is a passage from surat al-baqarah which you might find interesting:

    O you who have believed, do not invalidate your charities with reminders or injury as does one who spends his wealth [only] to be seen by the people and does not believe in Allah and the Last Day. His example is like that of a [large] smooth stone upon which is dust and is hit by a downpour that leaves it bare. They are unable [to keep] anything of what they have earned. And Allah does not guide the disbelieving people.

  10. A “gimmick” that has raised over $42 million dollars in the last 48 hours. Most people like myself, will poor water AND donate. We understand this is for a good cause.

  11. Josh, I feel like you missed the whole point of the challenge. I am sorry for your loss and I know it sucks to have to lose someone close to you.
    The ice bucket challenge while silly in concept has helped spread awareness of ALS and has led to a lot of money being raised to help fight a horrible disease. No one is arguing that it isn’t a serious or debilitating disease. So what if the price for awareness and donations is seeing a couple of videos of people pouring ice on themselves?
    People are trying to do something nice for a cause that you clearly feel passionate about. Instead of continuing to get angry why not just do what you can to help and educate others about ALS as you clearly have more experience than others.
    It also might help if you actually watch some of the videos before becoming so enraged. Achievement Hunter’s video took the time to explain what ALS is and Charlie Sheen also took the opportunity to challenge other celebrities to donate more. It really seems like you are just getting angry for the sake of being angry at something.

  12. Hi Josh,

    I imagine it’s really hard to see people trivializing the experience, not acknowledging what you go through while claiming to “raise awareness.” I’m sorry many participants’ desire to have fun is their primary, if not only goal.

    If people worked as hard to advocate as they do to craft an impression, we would accomplish a lot more and be much more respectful.

    Ashley

  13. Thank you for cutting through this ice bucket challenge bullshit. I completely agree with you… and hope a good number of people will read what you’ve written here.

  14. Thank you!!! I thought I was the only one!
    Have you ever heard Doug Stanhope’s bit about the 10K Fun Run for Nothing? In it he says “Raising awareness is another form of doing nothing!”

  15. Totally Agree ! What bothers me the most is that these rich people are doing the challenge without actually donating any money. Its like “hey im rich and could donate a hundred thousand dollars but instead I’m going to pour this bucket of ice on me instead!” Its ridiculous and has turned into publicity more than anything.

  16. Thanks for the info I thought same being aware doesn’t mean nothing like you said is not the flu. I personally believe if you wanna help a cause no matter what is you do privately. If its possible share a moment with the person. Throwing a bucket of water is just a dumb idea.

  17. When I first heard of this I thought the same thing, How the fuck does this cure it? It’s just a self severing smug stunt “I dumped water on me because I care all of a sudden. now to feel better about myself and go about my life” Just donate money and shut the fuck up about it. Guess Jerry Lewis should tell folks to punch them self’s in the balls or boobs for MD?

Comments are closed.