downsides of the ice bucket challenge
August 25, 2014 9:00 AM Subscribe
Why the Ice Bucket Challenge is bad for you: "The ALS campaign may be a great way to raise money – but it is a horrible reason to donate it"
Salon - The truth about the “Ice Bucket Challenge”
Quartz - The cold, hard truth about the ice bucket challenge
Avidly/LA Review of Books - On The ALS Ice Bucket Challenge and Ferguson
We, as individuals and as a society, have finite resources to donate to medical research and other worthy causes. When we decide where to spend our charitable dollars, we need to consider three factors.Slate - ALS Ice Bucket Challenge: Giving money to disease-specific charities is a bad idea
1. Where is the greatest need?
2. Where will my dollars have the greatest influence?
3. What is the most urgent problem?
The ALS challenge fails all three of these tests...
We aren’t rational, though. Typically, you will spend more time considering where to order a pizza and what to put on it, than you will deciding where to donate your charitable dollars. As a result, the real threats, the diseases that are far more likely to kill you and your loved ones are ignored. This is why the ALS Ice Bucket Challenge is bad for you, and me, and all of us. Instead of supporting what is most needed, we support what is most amusing.
Salon - The truth about the “Ice Bucket Challenge”
Quartz - The cold, hard truth about the ice bucket challenge
Avidly/LA Review of Books - On The ALS Ice Bucket Challenge and Ferguson
Last night on Facebook, my friend explicitly linked the two stories dominating my social media feed: The ALS Ice Bucket Challenge and the events in Ferguson, Missouri. My friend asked, “How many buckets of ice would I have to pour over my head to get people to care about black lives?” Likely meant to be more provocative than substantive—especially when compared to the real and deep connections confirmed between Ferguson and the Middle East — the question might be seen as an opportunistic, if well-meant, politicization of a charity fundraiser. Or more confrontationally, it might be challenged for implicitly setting up a false choice between caring about African Americans and people suffering from a terminal, incurable disease.previously: a compilation of people fucking up the ice bucket challenge
For me, the post struck a still-quick nerve, compelling me to take seriously the question of what moves people to care about others these days, to question what it means to “care.” And it made me think again about the relationship of two concepts that are strange traveling partners: care, and cure.
ALS is not the most urgent problem. Unless, of course, you or someone you know has ALS.
However, on a related "what IS urgent right now" note, I have to tip my hat to the Gaza-awareness Rubble Bucket Challenge.
posted by delfin at 9:04 AM on August 25, 2014 [16 favorites]
However, on a related "what IS urgent right now" note, I have to tip my hat to the Gaza-awareness Rubble Bucket Challenge.
posted by delfin at 9:04 AM on August 25, 2014 [16 favorites]
And then comes the backlash to the backlash, which precedes the backlash to the backlash to the backlash, and then everything on earth becomes a self-subsuming backlash to some part of a lash.
posted by norm at 9:04 AM on August 25, 2014 [24 favorites]
posted by norm at 9:04 AM on August 25, 2014 [24 favorites]
Pointless to ask people to think rational about this as none of us are in fact rational beings while the most rational thing to do would be to save your money and freeload on other people's efforts.
posted by MartinWisse at 9:05 AM on August 25, 2014 [5 favorites]
posted by MartinWisse at 9:05 AM on August 25, 2014 [5 favorites]
Peer pressure and guilt trips for a good cause.
posted by ChuckRamone at 9:06 AM on August 25, 2014 [4 favorites]
posted by ChuckRamone at 9:06 AM on August 25, 2014 [4 favorites]
the most rational thing to do would be to save your money and freeload on other people's efforts.
That's not very rational either, MartinWisse. It's short-term selfish, sure, but not rational.
posted by mediareport at 9:06 AM on August 25, 2014 [4 favorites]
That's not very rational either, MartinWisse. It's short-term selfish, sure, but not rational.
posted by mediareport at 9:06 AM on August 25, 2014 [4 favorites]
I'm sure many people gave to ALS when they would have otherwise not given anything to anyone.
posted by ThatCanadianGirl at 9:07 AM on August 25, 2014 [46 favorites]
posted by ThatCanadianGirl at 9:07 AM on August 25, 2014 [46 favorites]
In all honesty people are already moving away from ALS as the single beneficiary for the Ice Bucket Challenge and donating where they think the money would do the most good (mine is going to Ferguson Legal Relief, for instance) but I'm glad we were able to inevitably find the reason why record charitable donations are bad. (Seriously, if you're so sick of it, close facebook for a while and take a walk, but the attempted moralizing in this unavoidable backlash is laughably disingenuous.)
posted by Navelgazer at 9:08 AM on August 25, 2014 [11 favorites]
posted by Navelgazer at 9:08 AM on August 25, 2014 [11 favorites]
Any money that goes towards scientific research could result in complimentary conclusions that help issues that are in much greater need. More money in ALS research is perhaps less optimal from a short term perspective, but in the long term the dividends of a cure could be really interesting.
posted by niccolo at 9:09 AM on August 25, 2014 [3 favorites]
posted by niccolo at 9:09 AM on August 25, 2014 [3 favorites]
False dilemmas.
posted by allthinky at 9:10 AM on August 25, 2014 [13 favorites]
posted by allthinky at 9:10 AM on August 25, 2014 [13 favorites]
Even for supporting work on ALS, it would be great if the point of the ice bucket challenge was to challenge people to vote to increase NIH funding. You know, since that's how most basic research for these kinds of diseases often gets funded. (This article makes a similar point in a more sympathetic/friendly way.)
However, given that NIH funding has been slashed, it's AMAZING that people have been mobilized this way. We might just have to do a lot more of this.
posted by synapse at 9:10 AM on August 25, 2014 [20 favorites]
However, given that NIH funding has been slashed, it's AMAZING that people have been mobilized this way. We might just have to do a lot more of this.
posted by synapse at 9:10 AM on August 25, 2014 [20 favorites]
Yeah, people. Put away your cameras and go see Transformers IV again like you're supposed to. Entertainment is something you consume, not make for yourself. And those entertainment dollars belong to either Comcast, Disney, Fox, or Time-Warner. Don't be sending them to some charity! Unless maybe it's the absolute most deserving charity in existence. Go buy a Coke or something until you figure out exactly which one that is.
posted by straight at 9:11 AM on August 25, 2014 [25 favorites]
posted by straight at 9:11 AM on August 25, 2014 [25 favorites]
ALS is an incredibly worthy cause; I just hope the organizations receiving the windfalls are ready to handle the cash. Doing good work in support of a great cause doesn't necessarily mean you're ready administratively to scale it up x100 on a moment's notice. The organizational equivalent of winning the lottery.
posted by ThePinkSuperhero at 9:12 AM on August 25, 2014 [5 favorites]
posted by ThePinkSuperhero at 9:12 AM on August 25, 2014 [5 favorites]
"Everything fun is terrible! And if it's trying to do something good it's twice as terrible."
-The Internet
posted by Itaxpica at 9:12 AM on August 25, 2014 [49 favorites]
-The Internet
posted by Itaxpica at 9:12 AM on August 25, 2014 [49 favorites]
When we decide where to spend our charitable dollars, we need to consider three factors.
No, no "we" don't. I only need to consider ONE factor: is it a cause I support?
posted by MissySedai at 9:14 AM on August 25, 2014 [10 favorites]
No, no "we" don't. I only need to consider ONE factor: is it a cause I support?
posted by MissySedai at 9:14 AM on August 25, 2014 [10 favorites]
I lost my grandfather to ALS in 1988. The last several years of his life (my sister's entire lifetime) were pretty horrific. He was a pediatrician, and it devastated him not to be able to pick up and play cards with his grandchildren when he was ill. Even the night before he died, at 63, it was clear he was completely sharp and aware of everything that was happening.
So like, lay off, I think. The criticism really just comes off as jealousy that someone came up with a really good way to raise money for an important cause.
posted by roomthreeseventeen at 9:17 AM on August 25, 2014 [30 favorites]
So like, lay off, I think. The criticism really just comes off as jealousy that someone came up with a really good way to raise money for an important cause.
posted by roomthreeseventeen at 9:17 AM on August 25, 2014 [30 favorites]
Yeah, people. Put away your cameras and go see Transformers IV again like you're supposed to.
Guardians of the Galaxy is so much better.
posted by Brandon Blatcher at 9:18 AM on August 25, 2014 [7 favorites]
Guardians of the Galaxy is so much better.
posted by Brandon Blatcher at 9:18 AM on August 25, 2014 [7 favorites]
Every time you buy food more extravagant than mere subsistence, you're saying that you eating something that tastes good is more important than someone who is starving eating at all. Every time you buy deodorant, you're saying that you smelling like mountain breeze is more important than a kid dying of malaria getting treatment. Every time you spend an hour screwing around on the internet, you're saying that's more important than a kid learning to read.
It's kind of ridiculous to fixate on people donating to ALS. People are focusing on this one time that people cared enough to give so they can ignore that 99% of the time, none of us really care about anything but ourselves.
posted by the jam at 9:18 AM on August 25, 2014 [31 favorites]
It's kind of ridiculous to fixate on people donating to ALS. People are focusing on this one time that people cared enough to give so they can ignore that 99% of the time, none of us really care about anything but ourselves.
posted by the jam at 9:18 AM on August 25, 2014 [31 favorites]
I think the argument's sound but it's an argument against the charity system per se. We're too fond of charity to accept that.
The contrary argument is that charity is all 'additional' and therefore doesn't have to be rigorously justified. That doesn't really stack up, but you can say that realistically the alternative is not a rational allocation, but no money spent on any good cause.
Or if you're really bold, you could argue that charitable giving is all about the donors, not the recipients, designed to improve our moral natures or just give us a warm glow, so the allocation is fundamentally irrelevant.
Otherwise you'd have to call for the Government to abolish charity, impose a new tax and allocate the money rationally.
posted by Segundus at 9:19 AM on August 25, 2014 [5 favorites]
The contrary argument is that charity is all 'additional' and therefore doesn't have to be rigorously justified. That doesn't really stack up, but you can say that realistically the alternative is not a rational allocation, but no money spent on any good cause.
Or if you're really bold, you could argue that charitable giving is all about the donors, not the recipients, designed to improve our moral natures or just give us a warm glow, so the allocation is fundamentally irrelevant.
Otherwise you'd have to call for the Government to abolish charity, impose a new tax and allocate the money rationally.
posted by Segundus at 9:19 AM on August 25, 2014 [5 favorites]
I guess that in a perfect world, I wouldn't feel the need to donate to medical research because I would trust the NIH and other government agencies to organize and fund research wisely and consistently. But we don't live in a perfect world, and the NIH is funded by Congress, which is completely dysfunctional at the moment and probably going to get more dysfunctional when the Republicans take over the Senate. So yeah. It's not the way I wish things were, but I'm still going to donate to medical research, as well as fight like hell to elect politicians who will do the right thing on this and other issues.
posted by ArbitraryAndCapricious at 9:19 AM on August 25, 2014 [1 favorite]
posted by ArbitraryAndCapricious at 9:19 AM on August 25, 2014 [1 favorite]
1. You can only care about one thing at a time.
2. It has to be the most important thing OF ALL TIME.
3. Check Salon/Slate to make sure no one has written a contrarian article showing how your good intentions make you a giant asshole.
4. Instead of donating to charity, consider writing articles telling people why they're wrong.
5. Give up. You will never understand the bewildering minefield of giving money to charity.
posted by stavrogin at 9:23 AM on August 25, 2014 [27 favorites]
2. It has to be the most important thing OF ALL TIME.
3. Check Salon/Slate to make sure no one has written a contrarian article showing how your good intentions make you a giant asshole.
4. Instead of donating to charity, consider writing articles telling people why they're wrong.
5. Give up. You will never understand the bewildering minefield of giving money to charity.
posted by stavrogin at 9:23 AM on August 25, 2014 [27 favorites]
The Ice Bucket Challenge is a waste of time and money! Quite unlike the highly necessary mission of being paid to tell people that the Ice Bucket Challenge is a waste of time and money!
If it bothers you so much that people are having fund while raising money for charity, then follow in the footsteps of, say, Orlando Jones, who was able to bend the narrative in a different direction.
Or, just set up your own totally unrelated program to get people interested in the cause of your choosing. Yes, that's difficult. Quite a bit more difficult than wanking out these kinds of articles.
posted by Sticherbeast at 9:24 AM on August 25, 2014 [3 favorites]
If it bothers you so much that people are having fund while raising money for charity, then follow in the footsteps of, say, Orlando Jones, who was able to bend the narrative in a different direction.
Or, just set up your own totally unrelated program to get people interested in the cause of your choosing. Yes, that's difficult. Quite a bit more difficult than wanking out these kinds of articles.
posted by Sticherbeast at 9:24 AM on August 25, 2014 [3 favorites]
It's ridiculous to claim that something like this is bad. It doesn't encourage 100% optimal behavior by a rational actor, but very little we do is 100% rational optimal behavior. It is a ludicrous standard to apply only to when people are giving charitable donations.
If you want to get the most bang for your buck, do what you can to restore government research funding.
posted by grouse at 9:24 AM on August 25, 2014 [5 favorites]
If you want to get the most bang for your buck, do what you can to restore government research funding.
posted by grouse at 9:24 AM on August 25, 2014 [5 favorites]
"First, ALS research is not an especially great need in public health. It is classified as a rare disease and, thankfully, only about 600 people die from it every year in Canada."Heck, baseball legend Lou Gehrig was so happy to have it that he considered himself "the luckiest man on the face of the Earth".
posted by Atom Eyes at 9:25 AM on August 25, 2014 [11 favorites]
On another angle, I've also seen my vegan friends on Facebook voicing opposition, because the ALS Foundation does animal testing.
posted by smackfu at 9:26 AM on August 25, 2014
posted by smackfu at 9:26 AM on August 25, 2014
These articles show it is really challenging to discuss this topic without coming off as holier than thou and self-important, since it involves telling other people how they should best spend their own money (cause clearly they are too dense to do so, unlike the writers who know which causes are most noble). These came off as just another variation of the classic Internet complaint of, "How can you possibly care about THIS thing when MUCH WORSE OTHER THING is also going on at the same time?"
posted by The Gooch at 9:27 AM on August 25, 2014
posted by The Gooch at 9:27 AM on August 25, 2014
One time I attended a large fancy party hosted at a gigantic mansion owned by the guy running the Calabasas office of the ALS Association. It made me wonder how charities work.
posted by hellphish at 9:27 AM on August 25, 2014 [6 favorites]
posted by hellphish at 9:27 AM on August 25, 2014 [6 favorites]
And then comes the backlash to the backlash, which precedes the backlash to the backlash to the backlash, and then everything on earth becomes a self-subsuming backlash to some part of a lash.
Human history in a nutshell.
posted by Foosnark at 9:28 AM on August 25, 2014
Human history in a nutshell.
posted by Foosnark at 9:28 AM on August 25, 2014
A big part of my job is raising money for charity, and it's REALLY HARD. It's especially hard to get individual people to donate, especially especially when it's a niche thing that likely doesn't affect someone they personally know.
I am beyond thrilled that this has worked out so well, and I only hope that someday, I or someone else manages to sex up indigent criminal defense so effectively.
posted by showbiz_liz at 9:28 AM on August 25, 2014 [17 favorites]
I am beyond thrilled that this has worked out so well, and I only hope that someday, I or someone else manages to sex up indigent criminal defense so effectively.
posted by showbiz_liz at 9:28 AM on August 25, 2014 [17 favorites]
This is to remind people that, no matter how bad the ALS ice bucket challenge may be for our society, reading articles in Slate, Salon, or Quartz is worse. Just say no.
posted by benito.strauss at 9:30 AM on August 25, 2014 [7 favorites]
posted by benito.strauss at 9:30 AM on August 25, 2014 [7 favorites]
In all honesty people are already moving away from ALS as the single beneficiary for the Ice Bucket Challenge and donating where they think the money would do the most good (mine is going to Ferguson Legal Relief, for instance)
In all honesty, this is how the Ice Bucket Challenge was SUPPOSED to work. The first few rounds let dump-ees choose where they wanted to donate. Somehow ALS got attached to it and it overpowered everything else.
I have a number of problems with the Ice Bucket Challenge, but I still am happy for ALSA and am happy for those who will benefit from the research. I have no quarrell with the windfall ALSA has received as a result. I just want to make that clear.
Because the problems I have with it are more about the guilt-tripping that goes along with it. I'm glad other people are able to donate, I think it's great ALSA is getting so much money - however, I personally am not able to join in with this campaign or any other, and it was PROFOUNDLY awkward when I got tagged to participate because then I had to expose my shaky financial state, and I didn't want to do that.
There are also any one of a number of other reasons why people may prefer to be more private about their charity, and there are also any one of a number of reasons why people may prefer to give to another charitable cause. But becuase this has been attached to ALS now, people are getting blowback for donating elsewhere via bucket challenges of their own - Orlando Jones, who did a remarkable bucket-challenge commentary on Ferguson, is getting slammed by people claiming he's "stealing" the idea of the bucket challenge.
I'd have no problem with the ice bucket thing if it stopped with the whole "tagging someone else" element. Just post videos of you dumping something over your head and going "yay I did it and the check is in the mail" if you like, but if we could do away with the follow up of "and I tag my college roommate and my co-worker and my sister-in-law" that would be IDEAL, because maybe your sister-in-law doesn't want to play too.
posted by EmpressCallipygos at 9:32 AM on August 25, 2014 [11 favorites]
In all honesty, this is how the Ice Bucket Challenge was SUPPOSED to work. The first few rounds let dump-ees choose where they wanted to donate. Somehow ALS got attached to it and it overpowered everything else.
I have a number of problems with the Ice Bucket Challenge, but I still am happy for ALSA and am happy for those who will benefit from the research. I have no quarrell with the windfall ALSA has received as a result. I just want to make that clear.
Because the problems I have with it are more about the guilt-tripping that goes along with it. I'm glad other people are able to donate, I think it's great ALSA is getting so much money - however, I personally am not able to join in with this campaign or any other, and it was PROFOUNDLY awkward when I got tagged to participate because then I had to expose my shaky financial state, and I didn't want to do that.
There are also any one of a number of other reasons why people may prefer to be more private about their charity, and there are also any one of a number of reasons why people may prefer to give to another charitable cause. But becuase this has been attached to ALS now, people are getting blowback for donating elsewhere via bucket challenges of their own - Orlando Jones, who did a remarkable bucket-challenge commentary on Ferguson, is getting slammed by people claiming he's "stealing" the idea of the bucket challenge.
I'd have no problem with the ice bucket thing if it stopped with the whole "tagging someone else" element. Just post videos of you dumping something over your head and going "yay I did it and the check is in the mail" if you like, but if we could do away with the follow up of "and I tag my college roommate and my co-worker and my sister-in-law" that would be IDEAL, because maybe your sister-in-law doesn't want to play too.
posted by EmpressCallipygos at 9:32 AM on August 25, 2014 [11 favorites]
I'd have no problem with the ice bucket thing if it stopped with the whole "tagging someone else" element.
Maybe this is "Ask v. Guess" culture, but what's wrong with being tagged and saying, "Hey, I just gave $100 to [this association], maybe next time?" or "I can't right now, but thanks for spreading awareness."
posted by roomthreeseventeen at 9:35 AM on August 25, 2014 [10 favorites]
Maybe this is "Ask v. Guess" culture, but what's wrong with being tagged and saying, "Hey, I just gave $100 to [this association], maybe next time?" or "I can't right now, but thanks for spreading awareness."
posted by roomthreeseventeen at 9:35 AM on August 25, 2014 [10 favorites]
Yeah, seems like when this thing got close to my circle on Facebook, most tagged people just ignored it or said "haha, no."
posted by smackfu at 9:36 AM on August 25, 2014 [1 favorite]
posted by smackfu at 9:36 AM on August 25, 2014 [1 favorite]
Yes, everytime you buy a latte you are spending money you could have donated to a high impact charity like the Against Malaria Foundation - but generally, people don't pretend that buying latte's is a morally praiseworthy thing to do. It would not rub most people up the wrong way if we said someone who donates all of their latte money is a morally better person than someone who uses it to buy lattes, even if that is a moral level most of us won't reach.
But the signalling and mutual self-deception with the ice bucket challenge is much more obvious. You take the icebucket challenge and say you are doing it to with the intention of doing good when it's just another example of people acting in their own interests looking to have fun and signal about their own social status with their friends. It's the hypocrisy inherent in the icebucket challenge that leads to people criticising it.
In a way that hypocrisy is unavoidable in a morally demanding world, we all do lots of signalling actions that we think we are doing for reason X when looking closer it is reason Y motivating us but only if you are aware of the hypocrisy can you hope to fight it. But people are not comfortable being pointed out as hypocrites, so it goes
posted by Another Fine Product From The Nonsense Factory at 9:36 AM on August 25, 2014 [6 favorites]
But the signalling and mutual self-deception with the ice bucket challenge is much more obvious. You take the icebucket challenge and say you are doing it to with the intention of doing good when it's just another example of people acting in their own interests looking to have fun and signal about their own social status with their friends. It's the hypocrisy inherent in the icebucket challenge that leads to people criticising it.
In a way that hypocrisy is unavoidable in a morally demanding world, we all do lots of signalling actions that we think we are doing for reason X when looking closer it is reason Y motivating us but only if you are aware of the hypocrisy can you hope to fight it. But people are not comfortable being pointed out as hypocrites, so it goes
posted by Another Fine Product From The Nonsense Factory at 9:36 AM on August 25, 2014 [6 favorites]
Otherwise you'd have to call for the Government to abolish charity, impose a new tax and allocate the money rationally.
I think this is the goal. It's a dumb goal, but welcome to the rump state that the radical left's become in this country.
posted by Slap*Happy at 9:37 AM on August 25, 2014
I think this is the goal. It's a dumb goal, but welcome to the rump state that the radical left's become in this country.
posted by Slap*Happy at 9:37 AM on August 25, 2014
Any charitable giving other than completely secret charitable giving is probably done for at least partially suspect reasons. Anyone who has read the bible should be familiar with that idea.
posted by Area Man at 9:40 AM on August 25, 2014 [6 favorites]
posted by Area Man at 9:40 AM on August 25, 2014 [6 favorites]
ALS stole that bucket from the walrus.
posted by mullacc at 9:40 AM on August 25, 2014 [9 favorites]
posted by mullacc at 9:40 AM on August 25, 2014 [9 favorites]
...only if you are aware of the hypocrisy can you hope to fight it.
Sorry, I think becoming aware of ALS to fight it is more important than participating in Yet More Manners Pageantry.
I dunno. Maybe you can start your own awareness meme - "Shoot Your Own Foot For Hypocrisy" sounds good.
posted by Slap*Happy at 9:42 AM on August 25, 2014
Sorry, I think becoming aware of ALS to fight it is more important than participating in Yet More Manners Pageantry.
I dunno. Maybe you can start your own awareness meme - "Shoot Your Own Foot For Hypocrisy" sounds good.
posted by Slap*Happy at 9:42 AM on August 25, 2014
One time I attended a large fancy party hosted at a gigantic mansion owned by the guy running the Calabasas office of the ALS Association. It made me wonder how charities work.
You can look up the highest-paid workers on the ALSA's 990 forms. The highest-paid guy that might be in Calabasas earned $152,692 in 2013. You can decide whether that is too much for an executive at an organization with $24 million in annual revenue, but I don't think it is obviously ridiculously excessive.
posted by grouse at 9:43 AM on August 25, 2014 [8 favorites]
You can look up the highest-paid workers on the ALSA's 990 forms. The highest-paid guy that might be in Calabasas earned $152,692 in 2013. You can decide whether that is too much for an executive at an organization with $24 million in annual revenue, but I don't think it is obviously ridiculously excessive.
posted by grouse at 9:43 AM on August 25, 2014 [8 favorites]
*drops ice cubes into glass of Long Island Tea, writes check*
posted by Brandon Blatcher at 9:44 AM on August 25, 2014 [5 favorites]
posted by Brandon Blatcher at 9:44 AM on August 25, 2014 [5 favorites]
I am beyond thrilled that this has worked out so well, and I only hope that someday, I or someone else manages to sex up indigent criminal defense so effectively.
Part of my irritation is how we devote so much more charitable giving to "innocent" rather than "non-innocent" causes.
So ALS kills many fewer people than diabetes but gets much more money, heart disease kills more people than breast cancer but gets less, and prostate cancer kills fewer than COPD but gets more.
In every case it's "you deserve it" that causes people not to give. Which is why I think the culture of ALS and its ilk are part of why it's hard to raise money for indigent criminal defendants.
Of course these are individual decisions: but in aggregate they demonstrate our collective biases.
posted by anotherpanacea at 9:45 AM on August 25, 2014 [5 favorites]
Part of my irritation is how we devote so much more charitable giving to "innocent" rather than "non-innocent" causes.
So ALS kills many fewer people than diabetes but gets much more money, heart disease kills more people than breast cancer but gets less, and prostate cancer kills fewer than COPD but gets more.
In every case it's "you deserve it" that causes people not to give. Which is why I think the culture of ALS and its ilk are part of why it's hard to raise money for indigent criminal defendants.
Of course these are individual decisions: but in aggregate they demonstrate our collective biases.
posted by anotherpanacea at 9:45 AM on August 25, 2014 [5 favorites]
So ALS kills many fewer people than diabetes but gets much more money, heart disease kills more people than breast cancer but gets less, and prostate cancer kills fewer than COPD but gets more.
Why is this a competition?
posted by roomthreeseventeen at 9:47 AM on August 25, 2014 [6 favorites]
Why is this a competition?
posted by roomthreeseventeen at 9:47 AM on August 25, 2014 [6 favorites]
My brother-in-law worked for the ALS association for many years. His father died of ALS. Here's what a co-worker of his had to say about the challenge (edited for brevity):
"I first met someone living with ALS at the end of my first week on the job with The ALS Association in 2001. My boss drove me to a lovely home in Beverly Hills and introduced me to Neil Brourman. Neil had been a successful ophthalmic surgeon until he was no longer able to operate due to ALS.
When I first saw Neil, he was lying on a bed in the middle of a large room inside the home, hooked up to machines. There were several nurses buzzing around him, continually suctioning the saliva he could not swallow that dripped out of the mouth he could not close. His eyes were wide open, staring straight ahead. The nurses were putting drops into those eyes, which he could not blink, to keep them moistened, and then manually blinking his eyes for him.
Neil could no longer move, much less speak. But as with most people with ALS, his mind was working just fine, although you would never know it.
That was my introduction to amyotrophic lateral sclerosis, ALS.
Like the man who remodeled and furnished his home in southern California together with his wife and who, having lost her to ALS, cried every time I met with him because every room in that house (where he continued living) reminded him of her.
Like the couple back east who lost all four of their adult children to a particularly devastating form of ALS called familial ALS.
The stories were different, yet they all shared similarities: the feeling one day that something wasn’t quite right with the body. A weak arm. A foot that wasn’t working properly. Months of tests with numerous doctors. Finally a neurologist familiar with ALS would recognize the telltale symptoms and make the diagnosis.
Then, the crushing realization that prognosis from time of diagnosis is two to five years. And during that time, muscles would slowly stop working. Speech would slur. A wheelchair would be inevitable. The wrenching decision whether or not to go on a ventilator to assist with breathing.
Yet through it all, the stories of those struggling with the disease were filled with hope – hope of a cure, or at least a treatment to slow the disease. And, faced with a nearly certain death, those with ALS would manage to enjoy life, enjoy family, and attempt to spread the word about the disease.
The challenge in getting to a cure is, there just aren’t that many people with ALS compared with other diseases with greater public awareness. It is estimated that about 30,000 Americans at any given time have ALS.
Fundraising for ALS was made more difficult both by the lack of awareness and by the relatively small ALS community.
To make matters even more challenging, multiple ALS organizations were also raising funds for research, creating confusion in the philanthropic marketplace for a disease whose natural donor base was already small. The Muscular Dystrophy Association, Project ALS, and the ALS Therapy Development Institute (TDI) enjoyed some success at various points in getting attention while at the same time attempting to out-do The ALS Association and one another.
When not competing with other ALS organizations, The ALS Association struggled with in-fighting, like many charities with a “federated” structure do. The National Office and its network of local chapters, while sharing the same mission. were often at odds, and often over money.
The perception among the ALS community was that The ALS Association was slow, stodgy, not funding research quickly enough, and not funding the right kinds of research.
It wasn’t for lack of trying. When I was hired, The ALS Association had just launched a major initiative, The Lou Gehrig Challenge: Cure ALS Research Campaign, to raise money for a new “fast-track” research program – new, that is, to The ALS Association. Project ALS and ALS-TDI were funding similar research already.
Still, it wasn’t enough. Numerous smaller organizations would be formed over the years by those in the ALS community frustrated with the pace of research and believing they could do it better themselves.
Which brings me to the ALS Ice Bucket Challenge and why it is one of the most remarkable stories in philanthropy in recent years.
Remarkable because The ALS Association didn’t even come up with the idea. Fortunately its Massachusetts Chapter had a relationship with Pete Frates, the former Boston College baseball player who developed the disease and who is credited with the origins of the challenge when his friends posted videos of themselves on social media pouring ice water on their heads in his honor, to raise awareness.
No one could predict how this thing would explode over the past few weeks. When something goes viral on the Internet – whether Gangnam Style, What Does the Fox Say, the Apparently Kid, Grumpy Cat, you name it – it happens involuntarily and spontaneously. So it has been with the ALS Ice Bucket Challenge.
The ALS Association reports donations in excess of $62 million since July 29, compared with $2.4 million in the same period a year ago. For those who are skeptical of whether the Challenge is raising money, take it from someone who has raised money for ALS – this is an astronomical sum for the Association.
As for awareness, ALS is now a household name. You can’t buy that kind of awareness. It is a marketing person’s wildest dream to have that level of brand awareness – and the awareness is growing despite not using the one thing with which the disease has most commonly been associated, the name of Lou Gehrig. This isn’t the Lou Gehrig’s Disease Ice Bucket Challenge. It’s ALS.
What organization can say that former Presidents, major celebrities, philanthropists, CEOs of major corporations, sports figures, and everyday people are all doing the same thing – over and over and over – to raise awareness for a disease that strikes so few?
What organization can say that it has seen its fundraising spike 25 times (and still growing) over the prior year – for something that essentially cost the organization nothing (although the Association is presumably spending money to keep the Challenge going as long as possible)?
The onus is on The ALS Association to use this infusion of dollars in a prudent but expedient manner. Research is costly and slow. Over a million new donors have placed their trust in the Association to fund research – more of it, a lot of it – to strike out this disease. The risk is that the Association will misuse the goodwill of everyone involved with the Challenge, as other organizations have done after seeing a dramatic spike in donations.
The events of the past month have forever changed The ALS Association, and I am confident that they will do right by their new donors and their newfound fame. After all, this is an organization – until recently, one of many disease-focused charities toiling away in relative obscurity – that ultimately wants to put itself out of business.
The success of the Ice Bucket Challenge has given The ALS Association an unexpected opportunity to do just that.
posted by Sophie1 at 9:49 AM on August 25, 2014 [33 favorites]
"I first met someone living with ALS at the end of my first week on the job with The ALS Association in 2001. My boss drove me to a lovely home in Beverly Hills and introduced me to Neil Brourman. Neil had been a successful ophthalmic surgeon until he was no longer able to operate due to ALS.
When I first saw Neil, he was lying on a bed in the middle of a large room inside the home, hooked up to machines. There were several nurses buzzing around him, continually suctioning the saliva he could not swallow that dripped out of the mouth he could not close. His eyes were wide open, staring straight ahead. The nurses were putting drops into those eyes, which he could not blink, to keep them moistened, and then manually blinking his eyes for him.
Neil could no longer move, much less speak. But as with most people with ALS, his mind was working just fine, although you would never know it.
That was my introduction to amyotrophic lateral sclerosis, ALS.
Like the man who remodeled and furnished his home in southern California together with his wife and who, having lost her to ALS, cried every time I met with him because every room in that house (where he continued living) reminded him of her.
Like the couple back east who lost all four of their adult children to a particularly devastating form of ALS called familial ALS.
The stories were different, yet they all shared similarities: the feeling one day that something wasn’t quite right with the body. A weak arm. A foot that wasn’t working properly. Months of tests with numerous doctors. Finally a neurologist familiar with ALS would recognize the telltale symptoms and make the diagnosis.
Then, the crushing realization that prognosis from time of diagnosis is two to five years. And during that time, muscles would slowly stop working. Speech would slur. A wheelchair would be inevitable. The wrenching decision whether or not to go on a ventilator to assist with breathing.
Yet through it all, the stories of those struggling with the disease were filled with hope – hope of a cure, or at least a treatment to slow the disease. And, faced with a nearly certain death, those with ALS would manage to enjoy life, enjoy family, and attempt to spread the word about the disease.
The challenge in getting to a cure is, there just aren’t that many people with ALS compared with other diseases with greater public awareness. It is estimated that about 30,000 Americans at any given time have ALS.
Fundraising for ALS was made more difficult both by the lack of awareness and by the relatively small ALS community.
To make matters even more challenging, multiple ALS organizations were also raising funds for research, creating confusion in the philanthropic marketplace for a disease whose natural donor base was already small. The Muscular Dystrophy Association, Project ALS, and the ALS Therapy Development Institute (TDI) enjoyed some success at various points in getting attention while at the same time attempting to out-do The ALS Association and one another.
When not competing with other ALS organizations, The ALS Association struggled with in-fighting, like many charities with a “federated” structure do. The National Office and its network of local chapters, while sharing the same mission. were often at odds, and often over money.
The perception among the ALS community was that The ALS Association was slow, stodgy, not funding research quickly enough, and not funding the right kinds of research.
It wasn’t for lack of trying. When I was hired, The ALS Association had just launched a major initiative, The Lou Gehrig Challenge: Cure ALS Research Campaign, to raise money for a new “fast-track” research program – new, that is, to The ALS Association. Project ALS and ALS-TDI were funding similar research already.
Still, it wasn’t enough. Numerous smaller organizations would be formed over the years by those in the ALS community frustrated with the pace of research and believing they could do it better themselves.
Which brings me to the ALS Ice Bucket Challenge and why it is one of the most remarkable stories in philanthropy in recent years.
Remarkable because The ALS Association didn’t even come up with the idea. Fortunately its Massachusetts Chapter had a relationship with Pete Frates, the former Boston College baseball player who developed the disease and who is credited with the origins of the challenge when his friends posted videos of themselves on social media pouring ice water on their heads in his honor, to raise awareness.
No one could predict how this thing would explode over the past few weeks. When something goes viral on the Internet – whether Gangnam Style, What Does the Fox Say, the Apparently Kid, Grumpy Cat, you name it – it happens involuntarily and spontaneously. So it has been with the ALS Ice Bucket Challenge.
The ALS Association reports donations in excess of $62 million since July 29, compared with $2.4 million in the same period a year ago. For those who are skeptical of whether the Challenge is raising money, take it from someone who has raised money for ALS – this is an astronomical sum for the Association.
As for awareness, ALS is now a household name. You can’t buy that kind of awareness. It is a marketing person’s wildest dream to have that level of brand awareness – and the awareness is growing despite not using the one thing with which the disease has most commonly been associated, the name of Lou Gehrig. This isn’t the Lou Gehrig’s Disease Ice Bucket Challenge. It’s ALS.
What organization can say that former Presidents, major celebrities, philanthropists, CEOs of major corporations, sports figures, and everyday people are all doing the same thing – over and over and over – to raise awareness for a disease that strikes so few?
What organization can say that it has seen its fundraising spike 25 times (and still growing) over the prior year – for something that essentially cost the organization nothing (although the Association is presumably spending money to keep the Challenge going as long as possible)?
The onus is on The ALS Association to use this infusion of dollars in a prudent but expedient manner. Research is costly and slow. Over a million new donors have placed their trust in the Association to fund research – more of it, a lot of it – to strike out this disease. The risk is that the Association will misuse the goodwill of everyone involved with the Challenge, as other organizations have done after seeing a dramatic spike in donations.
The events of the past month have forever changed The ALS Association, and I am confident that they will do right by their new donors and their newfound fame. After all, this is an organization – until recently, one of many disease-focused charities toiling away in relative obscurity – that ultimately wants to put itself out of business.
The success of the Ice Bucket Challenge has given The ALS Association an unexpected opportunity to do just that.
posted by Sophie1 at 9:49 AM on August 25, 2014 [33 favorites]
*drops ice cubes into glass of Long Island Tea, writes check*
Well, Patrick Stewart beat you to it. And has better taste. ;)
posted by Celsius1414 at 9:49 AM on August 25, 2014 [8 favorites]
Well, Patrick Stewart beat you to it. And has better taste. ;)
posted by Celsius1414 at 9:49 AM on August 25, 2014 [8 favorites]
I think the ice bucket challenge is a little silly (although we were PRETTY DARN DELIGHTED when my kids' pediatrician showed up in my facebook feed getting iced because she is a friend-of-a-friend, my kids thought this was the greatest. thing. ever.), but one thing that's been really interesting about it to me is how engaged kids are with it. Elementary-school-aged kids (so 5 to 10 ish) are really into it. They like seeing other people get iced, they love the "stupid dare" part of getting iced themselves, they love that they're helping a good cause by getting iced, having mom post it on facebook, donating their allowance to a charity, and tagging other friends or relatives to get iced. Seriously every kid at my son's elementary school now knows what ALS is, and a lot of my friends' kids are saying, "Hey, mom, you know how we did the ice bucket to help people with ALS? Is there something like that we could do to help Aunt Bonnie who has cancer?"
I think the greatest knock-on effect of this insanely viral, somewhat silly (but FUN-silly) fundraiser/awareness-raiser, won't be the 8 billion attempts to copy it by every other disease charity in America (although I expect that to start annoying me in 3 ... 2 ... 1 ...) but that so many kids have been turned on to fundraising and awareness-raising as something that people do, and that they can do. In 20 years you're going to have people starting up important charities talking about how when they were 8 years old they did the ice-bucket challenge and that led them into volunteering and fundraising and now they run a charity that provides fresh water relief to impoverished thirsty moon-people or something.
posted by Eyebrows McGee at 9:50 AM on August 25, 2014 [9 favorites]
I think the greatest knock-on effect of this insanely viral, somewhat silly (but FUN-silly) fundraiser/awareness-raiser, won't be the 8 billion attempts to copy it by every other disease charity in America (although I expect that to start annoying me in 3 ... 2 ... 1 ...) but that so many kids have been turned on to fundraising and awareness-raising as something that people do, and that they can do. In 20 years you're going to have people starting up important charities talking about how when they were 8 years old they did the ice-bucket challenge and that led them into volunteering and fundraising and now they run a charity that provides fresh water relief to impoverished thirsty moon-people or something.
posted by Eyebrows McGee at 9:50 AM on August 25, 2014 [9 favorites]
Why is this a competition?
Because it demonstrates a systematic bias against poor people whose diseases and deaths are treated as less worthy.
posted by anotherpanacea at 9:54 AM on August 25, 2014 [6 favorites]
Because it demonstrates a systematic bias against poor people whose diseases and deaths are treated as less worthy.
posted by anotherpanacea at 9:54 AM on August 25, 2014 [6 favorites]
It's the hypocrisy inherent in the icebucket challenge that leads to people criticising it.
There is nothing sinful or inconsistent about turning charitable donations into a funny social game. The design of the challenge shows a smart understanding of social behavior. It would only be hypocritical if these same people were averring that they were doing the Ice Bucket Challenge because it was the single most urgent, important, and selfless thing that they could ever do. But, they're not, so who cares.
Indeed, the even more prominent hypocrisy of this line of criticism is why people respond to it with, at best, laughter. Unless your goal was to produce dismissive scorn for your own point of view, then you are wasting your time and resources by expressing it this way. It's even worse when one realizes that you could be doing so many other good things, other than virtually wagging your virtual finger on a website.
posted by Sticherbeast at 9:54 AM on August 25, 2014 [1 favorite]
There is nothing sinful or inconsistent about turning charitable donations into a funny social game. The design of the challenge shows a smart understanding of social behavior. It would only be hypocritical if these same people were averring that they were doing the Ice Bucket Challenge because it was the single most urgent, important, and selfless thing that they could ever do. But, they're not, so who cares.
Indeed, the even more prominent hypocrisy of this line of criticism is why people respond to it with, at best, laughter. Unless your goal was to produce dismissive scorn for your own point of view, then you are wasting your time and resources by expressing it this way. It's even worse when one realizes that you could be doing so many other good things, other than virtually wagging your virtual finger on a website.
posted by Sticherbeast at 9:54 AM on August 25, 2014 [1 favorite]
Because it demonstrates a systematic bias against poor people whose diseases and deaths are treated as less worthy.
I'm not sure I follow. ALS does not know what class you are. And while things like diabetes are often behavior based, they aren't always. And one organization having extra money one summer doesn't really highlight anything other than the fact that we do a crappy job educating people on diseases that affect a larger group of people.
posted by roomthreeseventeen at 9:56 AM on August 25, 2014 [1 favorite]
I'm not sure I follow. ALS does not know what class you are. And while things like diabetes are often behavior based, they aren't always. And one organization having extra money one summer doesn't really highlight anything other than the fact that we do a crappy job educating people on diseases that affect a larger group of people.
posted by roomthreeseventeen at 9:56 AM on August 25, 2014 [1 favorite]
ALS does not know what class you are.
No, but the people giving the money do.
posted by anotherpanacea at 9:57 AM on August 25, 2014 [3 favorites]
No, but the people giving the money do.
posted by anotherpanacea at 9:57 AM on August 25, 2014 [3 favorites]
anotherpanacea, I still don't understand your point. Even if you have all the money in the world, ALS is still lethal, and very quickly. Diabetes isn't always.
posted by roomthreeseventeen at 9:59 AM on August 25, 2014
posted by roomthreeseventeen at 9:59 AM on August 25, 2014
Oh, I didn't know that this challenge became associated with ALS after its start, that it wasn't at the origin. Huh. I've only watched a handful of videos and have been too pressed with other things to actually read up on the specifics of the challenge. Though I donate to charity, I have mixed feelings about the system and with the state I'm currently in I cannot participate in the challenge in any manner. I did read one article about it. (And I need to leave, so I'm just linking it.)
The Difference Between ALS and Ferguson Is That One Ill Can Be Cured By Jia Tolentino
I'm linking it because it was sort of brought up in the post. In case you're wondering what this article is about:
The Difference Between ALS and Ferguson Is That One Ill Can Be Cured By Jia Tolentino
I'm linking it because it was sort of brought up in the post. In case you're wondering what this article is about:
I don’t believe in zero-sum games and I don’t write this to imply that neurodegenerative disease and human rights abuse have been put in direct conflict. Rather, I’m fascinated with what appears to be the opposite. The contemporaneity of these waves in social communication have revealed these ills — as well as the advocates for their solutions — to not just be non-conflicting but also emblematic of two separate paths of identifying and addressing unfairness, two roads that are inherently miles and miles apart.posted by one teak forest at 10:01 AM on August 25, 2014 [2 favorites]
Even if you have all the money in the world, ALS is still lethal, and very quickly. Diabetes isn't always.
Here is a chart. ALS kills a few people regardless of race or class. Diabetes kills a lot of people, and it disproportionately kills non-white people with low socio-economic status.
Breast cancer kills women regardless of race or class. COPD disproportionately kills non-white people with low socio-economic status.
Prostate cancer kills men who are disproportionately whiter and older than the general population. Heart disease disproportionately kills non-white people with low socio-economic status.
In six biggest cases, the whiter, richer illnesses are better funded than the browner, poorer illnesses, despite the fact that this funding is itself not proportionate to the deaths caused by the illness.
That's a systematic bias.
posted by anotherpanacea at 10:06 AM on August 25, 2014 [37 favorites]
Here is a chart. ALS kills a few people regardless of race or class. Diabetes kills a lot of people, and it disproportionately kills non-white people with low socio-economic status.
Breast cancer kills women regardless of race or class. COPD disproportionately kills non-white people with low socio-economic status.
Prostate cancer kills men who are disproportionately whiter and older than the general population. Heart disease disproportionately kills non-white people with low socio-economic status.
In six biggest cases, the whiter, richer illnesses are better funded than the browner, poorer illnesses, despite the fact that this funding is itself not proportionate to the deaths caused by the illness.
That's a systematic bias.
posted by anotherpanacea at 10:06 AM on August 25, 2014 [37 favorites]
False dilemmas.
A former work colleague of mine has ALS and his disease is literally a life-and-death matter for him and his family. I cannot begin to understand the poisonous mentality behind click-bait pieces that try to find fault with recent fundraising efforts, and I'm not going to try. It is heinous, though, and another spectacular example of how modern media is dragging us down as a species.
posted by Mr. Six at 10:08 AM on August 25, 2014 [2 favorites]
A former work colleague of mine has ALS and his disease is literally a life-and-death matter for him and his family. I cannot begin to understand the poisonous mentality behind click-bait pieces that try to find fault with recent fundraising efforts, and I'm not going to try. It is heinous, though, and another spectacular example of how modern media is dragging us down as a species.
posted by Mr. Six at 10:08 AM on August 25, 2014 [2 favorites]
To quote an old fave from back in the day:
FALSE DICHOTOBOT HAS DETECTED SOMETHING
posted by 912 Greens at 10:09 AM on August 25, 2014 [3 favorites]
FALSE DICHOTOBOT HAS DETECTED SOMETHING
posted by 912 Greens at 10:09 AM on August 25, 2014 [3 favorites]
This is overthinking a bucket of ice.
posted by cjorgensen at 10:12 AM on August 25, 2014
posted by cjorgensen at 10:12 AM on August 25, 2014
ALS does not know what class you are.
It sure as hell knows what race you are.
posted by Lemurrhea at 10:12 AM on August 25, 2014 [2 favorites]
It sure as hell knows what race you are.
posted by Lemurrhea at 10:12 AM on August 25, 2014 [2 favorites]
If you had no interest in giving before, please be aware the pro-life camp is against the ice bucket challenge. I donated out of spite! I do most things out of spite.
posted by cjorgensen at 10:14 AM on August 25, 2014 [15 favorites]
posted by cjorgensen at 10:14 AM on August 25, 2014 [15 favorites]
It sure as hell knows what race you are.
Sorry, I have no idea what this means.
posted by roomthreeseventeen at 10:15 AM on August 25, 2014
Sorry, I have no idea what this means.
posted by roomthreeseventeen at 10:15 AM on August 25, 2014
Dumping ice water on your head to indicate charitable giving is good and all but when my Facebook feed is >40% ice water challenge videos I'm going to say it feels played out. Let me know when the meme morphs into the bukkake challenge for HIV research.
I don't begrudge the giving to ALS research. The whole things strikes me as giving motivated by narcisism, not by any real feelings of charity and that's my problem with it.
posted by Fezboy! at 10:17 AM on August 25, 2014 [2 favorites]
I don't begrudge the giving to ALS research. The whole things strikes me as giving motivated by narcisism, not by any real feelings of charity and that's my problem with it.
posted by Fezboy! at 10:17 AM on August 25, 2014 [2 favorites]
It is true that there are serious problems with getting people to constructively care about poverty, especially when the poverty is not Otherized into the stereotypical "starving children in Africa". There is indeed a taint on causes which may be perceived as being in some way the victims' fault. See the book Uncharitable for more details, in particular the bits about doing charitable work for suicide-related causes.
However, there are many additional complications. Diabetes and COPD are qualitatively different from cancers. Treatment strategies for diabetes cannot be directly compared to treatment strategies for cancer. Many of the resources which go into preventing, treating, etc. diabetes and COPD are part of other, larger programs, such as hospitals, health education, OSHA-type regulations, and air pollution regulations.
There are also important factors aside from poverty which contribute to these kinds of disparities: for example, breast cancer kills about as many people as prostate cancer does, and yet the former gets much more funding. A large part of that may have to do with how breast cancer strikes younger people. There is also the fact that breasts are seen by many as being visibly, definitionally female in a way that prostates are not for men: breast cancer is perceived as a fairly general attack on women's health, whereas prostate cancer is perceived more typically as just one of many cancers that old men could eventually get.
And yet this is not a horse race, nor is it Harrison Bergeron: breast cancer charities have not done anything wrong by accepting so much money. (Whether other charities out there in world do other things wrong with such money is a separate question - the point is that there is nothing sinful in and of itself about successfully raising money.)
posted by Sticherbeast at 10:18 AM on August 25, 2014 [1 favorite]
However, there are many additional complications. Diabetes and COPD are qualitatively different from cancers. Treatment strategies for diabetes cannot be directly compared to treatment strategies for cancer. Many of the resources which go into preventing, treating, etc. diabetes and COPD are part of other, larger programs, such as hospitals, health education, OSHA-type regulations, and air pollution regulations.
There are also important factors aside from poverty which contribute to these kinds of disparities: for example, breast cancer kills about as many people as prostate cancer does, and yet the former gets much more funding. A large part of that may have to do with how breast cancer strikes younger people. There is also the fact that breasts are seen by many as being visibly, definitionally female in a way that prostates are not for men: breast cancer is perceived as a fairly general attack on women's health, whereas prostate cancer is perceived more typically as just one of many cancers that old men could eventually get.
And yet this is not a horse race, nor is it Harrison Bergeron: breast cancer charities have not done anything wrong by accepting so much money. (Whether other charities out there in world do other things wrong with such money is a separate question - the point is that there is nothing sinful in and of itself about successfully raising money.)
posted by Sticherbeast at 10:18 AM on August 25, 2014 [1 favorite]
This isn't exactly an argument against donating to a specific charity. It's more a recap of Philosophy 101, a discussion of what is "best" or "moral" using some sort of utilitarian approach to the most effective way donating, so that it benefits the greatest good.
There's an even more practical philosophy that I recommend to everybody: the best way to do something good is to do something that will actually get done by you. I.e., what is the best exercise? The one that you will actually do. What is the best healthy food to eat? The healthy food that you will actually eat. What is the best charity to donate / spread awareness for? The one that you will actually donate / spread awareness for. Why? Because otherwise, it may not get done.
I do not think that ALS is better than any other charity per se, although it is the one I donated to. We can argue all day long where money is best distributed, but again, it is just a Mills vs. Peirce vs. Marx kind of argument. The best charity to donate to is the one you will actually donate to, because then the charity is provided.
I invite the critical analysis of this, though. Perhaps there are other great things coming from the ALS Ice Bucket Challenge? Such as:
(1) the Ice Bucket Challenge brings not just ALS, but charitable giving as a whole, into the spotlight. Don't be surprised if a lot of other charities also have gotten an Ice Bucket bump in donations.
(2) the Ice Bucket Challenge has established a groundbreaking form of charity, which can be adopted for so many other worthy charities.
(3) It is at least interesting, if not entertaining, to watch celebrities, politicians, public figures and your friends doing this.
posted by 90s_username04 at 10:19 AM on August 25, 2014 [7 favorites]
There's an even more practical philosophy that I recommend to everybody: the best way to do something good is to do something that will actually get done by you. I.e., what is the best exercise? The one that you will actually do. What is the best healthy food to eat? The healthy food that you will actually eat. What is the best charity to donate / spread awareness for? The one that you will actually donate / spread awareness for. Why? Because otherwise, it may not get done.
I do not think that ALS is better than any other charity per se, although it is the one I donated to. We can argue all day long where money is best distributed, but again, it is just a Mills vs. Peirce vs. Marx kind of argument. The best charity to donate to is the one you will actually donate to, because then the charity is provided.
I invite the critical analysis of this, though. Perhaps there are other great things coming from the ALS Ice Bucket Challenge? Such as:
(1) the Ice Bucket Challenge brings not just ALS, but charitable giving as a whole, into the spotlight. Don't be surprised if a lot of other charities also have gotten an Ice Bucket bump in donations.
(2) the Ice Bucket Challenge has established a groundbreaking form of charity, which can be adopted for so many other worthy charities.
(3) It is at least interesting, if not entertaining, to watch celebrities, politicians, public figures and your friends doing this.
posted by 90s_username04 at 10:19 AM on August 25, 2014 [7 favorites]
Let me know when the meme morphs into the bukkake challenge for HIV research.
OMG, yes, please, let us all know. Nothing against HIV research, but I'll be avoiding Facebook until that one plays out.
posted by ThePinkSuperhero at 10:19 AM on August 25, 2014 [1 favorite]
OMG, yes, please, let us all know. Nothing against HIV research, but I'll be avoiding Facebook until that one plays out.
posted by ThePinkSuperhero at 10:19 AM on August 25, 2014 [1 favorite]
It sure as hell knows what race you are.
Sorry, I have no idea what this means.
We're referring to racial and ethnic incidence rates. The incidence of ALS is 1.80 per 100,000 person years among Caucasians, 0.80 among African Americans, 0.76 among Asians, and 0.58 among Hispanics.
For diabetes, 38.7 African-Americans will die of diabetes per 100,000, while 19 whites will die per 100,000.
posted by anotherpanacea at 10:20 AM on August 25, 2014 [2 favorites]
Sorry, I have no idea what this means.
We're referring to racial and ethnic incidence rates. The incidence of ALS is 1.80 per 100,000 person years among Caucasians, 0.80 among African Americans, 0.76 among Asians, and 0.58 among Hispanics.
For diabetes, 38.7 African-Americans will die of diabetes per 100,000, while 19 whites will die per 100,000.
posted by anotherpanacea at 10:20 AM on August 25, 2014 [2 favorites]
Maybe this is "Ask v. Guess" culture, but what's wrong with being tagged and saying, "Hey, I just gave $100 to [this association], maybe next time?" or "I can't right now, but thanks for spreading awareness."
I'll grant that this is what I did, but there are those who may not be as free of moral high-ground-takers than I am. And that doesn't address the fact that my not wanting to discuss my financial state with anyone, but was forced to do so, felt sucky in the first place.
It's more like an "opt-in vs. opt-out" thing, I'd say, as opposed to "ask vs. guess"; it may only take you 30 seconds to unsubscribe from an email mail list you never signed up for, but not getting that email in the first place unless you DO sign up for it is still better. Similarly, I'd much rather have been free to sit back and watch a number of videos and let the spirit of fun come around and eventually grab me if I was able, and THEN participate if I could, rather than watching a few and then suddenly have the finger pointed at me and everyone say "YOUR TURN!" and have to then take a pass with everyone watching.
posted by EmpressCallipygos at 10:21 AM on August 25, 2014 [2 favorites]
I'll grant that this is what I did, but there are those who may not be as free of moral high-ground-takers than I am. And that doesn't address the fact that my not wanting to discuss my financial state with anyone, but was forced to do so, felt sucky in the first place.
It's more like an "opt-in vs. opt-out" thing, I'd say, as opposed to "ask vs. guess"; it may only take you 30 seconds to unsubscribe from an email mail list you never signed up for, but not getting that email in the first place unless you DO sign up for it is still better. Similarly, I'd much rather have been free to sit back and watch a number of videos and let the spirit of fun come around and eventually grab me if I was able, and THEN participate if I could, rather than watching a few and then suddenly have the finger pointed at me and everyone say "YOUR TURN!" and have to then take a pass with everyone watching.
posted by EmpressCallipygos at 10:21 AM on August 25, 2014 [2 favorites]
1. Where is the greatest need?
2. Where will my dollars have the greatest influence?
3. What is the most urgent problem?
I'm sure this has already been said better in this thread, but I'm just pissed off by these, because the answer to all of these questions is highly subjective, and I don't think any random shitheel on the internet gets to tell me - or anyone else - what the answers should be for any cause.
I haven't supported the ice bucket challenge simply because it doesn't hit all the right answers for me; that doesn't mean I get to tell anyone else that they are wrong for supporting it.
posted by nubs at 10:23 AM on August 25, 2014 [3 favorites]
2. Where will my dollars have the greatest influence?
3. What is the most urgent problem?
I'm sure this has already been said better in this thread, but I'm just pissed off by these, because the answer to all of these questions is highly subjective, and I don't think any random shitheel on the internet gets to tell me - or anyone else - what the answers should be for any cause.
I haven't supported the ice bucket challenge simply because it doesn't hit all the right answers for me; that doesn't mean I get to tell anyone else that they are wrong for supporting it.
posted by nubs at 10:23 AM on August 25, 2014 [3 favorites]
breast cancer kills about as many people as prostate cancer does, and yet the former gets much more funding
That's not quite true. Breast cancer kills about twice as many people as prostate cancer, and breast cancer receives about 36 times as much as prostate cancer in donations.
breast cancer charities have not done anything wrong by accepting so much money
Given how much money Susan G. Komen spends on advertising and the salaries of administrators, not grants to research, I think it's fair to say that Komen, at least, should be redirecting funds elsewhere.
posted by anotherpanacea at 10:26 AM on August 25, 2014 [4 favorites]
That's not quite true. Breast cancer kills about twice as many people as prostate cancer, and breast cancer receives about 36 times as much as prostate cancer in donations.
breast cancer charities have not done anything wrong by accepting so much money
Given how much money Susan G. Komen spends on advertising and the salaries of administrators, not grants to research, I think it's fair to say that Komen, at least, should be redirecting funds elsewhere.
posted by anotherpanacea at 10:26 AM on August 25, 2014 [4 favorites]
The whole things strikes me as giving motivated by narcisism, not by any real feelings of charity and that's my problem with it.
Oh man, if we start judging charity by the purity of its motivations then we may as well just give up now. I quietly donated money to the Ferguson bail fund last week, and while I did it in part because it's a good cause for people who needed help, the deciding factor was seeing those smug wankers at the pro-shooter rally. I couldn't actually stomp on their toes, so I sent money instead.
Why worry whether people's intentions are 100% pure? I'm as tired of hearing about it as anyone, but funding is funding. Money doesn't care what you were thinking at the time.
posted by jess at 10:29 AM on August 25, 2014 [7 favorites]
Oh man, if we start judging charity by the purity of its motivations then we may as well just give up now. I quietly donated money to the Ferguson bail fund last week, and while I did it in part because it's a good cause for people who needed help, the deciding factor was seeing those smug wankers at the pro-shooter rally. I couldn't actually stomp on their toes, so I sent money instead.
Why worry whether people's intentions are 100% pure? I'm as tired of hearing about it as anyone, but funding is funding. Money doesn't care what you were thinking at the time.
posted by jess at 10:29 AM on August 25, 2014 [7 favorites]
Why is this a competition?
Charity-driven medical research is by definition a competition.
In an ideal world, our resources should be pooled where they can do the most good. This doesn't just mean funneling money into the diseases that affect the most people -- it also means following promising avenues of research, when it appears that treatments and cures might be attainable.
On both counts, ALS research comes up depressingly short. It's good that we're still funding the research, but the results to date have yielded an awful lot of dead-ends. We don't even really understand how the disease works.
posted by schmod at 10:36 AM on August 25, 2014 [2 favorites]
Charity-driven medical research is by definition a competition.
In an ideal world, our resources should be pooled where they can do the most good. This doesn't just mean funneling money into the diseases that affect the most people -- it also means following promising avenues of research, when it appears that treatments and cures might be attainable.
On both counts, ALS research comes up depressingly short. It's good that we're still funding the research, but the results to date have yielded an awful lot of dead-ends. We don't even really understand how the disease works.
posted by schmod at 10:36 AM on August 25, 2014 [2 favorites]
That's false. Breast cancer kills about twice as many people as prostate cancer, and breast cancer receives about 36 times as much in donations.
We're both wrong. In the US for 2014, they predict about 29,480 prostate cancer deaths, compared to 40,000 breast cancer deaths. Roughly equal numbers of people will develop both cancers, however. One in seven men will develop prostate cancer in their lifetime, whereas one in eight women in develop breast cancer in their lifetime. Source, source. I had confused cases with deaths.
Either way, we would both agree that, as a matter of pure math, breast cancer donations are disproportionately higher. However, that is not a sin!
Given how much money Susan G. Komen spends on advertising and the salaries of administrators, not grants to research, I think it's fair to say that Komen, at least, should be redirecting funds elsewhere.
This is not relevant. The problem with Komen is not that they're too good at raising money. Whether other charities out there in world do other things wrong with such money is a separate question - the point is that there is nothing sinful in and of itself about successfully raising money.
posted by Sticherbeast at 10:36 AM on August 25, 2014 [1 favorite]
We're both wrong. In the US for 2014, they predict about 29,480 prostate cancer deaths, compared to 40,000 breast cancer deaths. Roughly equal numbers of people will develop both cancers, however. One in seven men will develop prostate cancer in their lifetime, whereas one in eight women in develop breast cancer in their lifetime. Source, source. I had confused cases with deaths.
Either way, we would both agree that, as a matter of pure math, breast cancer donations are disproportionately higher. However, that is not a sin!
Given how much money Susan G. Komen spends on advertising and the salaries of administrators, not grants to research, I think it's fair to say that Komen, at least, should be redirecting funds elsewhere.
This is not relevant. The problem with Komen is not that they're too good at raising money. Whether other charities out there in world do other things wrong with such money is a separate question - the point is that there is nothing sinful in and of itself about successfully raising money.
posted by Sticherbeast at 10:36 AM on August 25, 2014 [1 favorite]
It made me wonder how charities work.
Having worked in private philanthropy for nearly a decade now I can tell you that it is really fucking demoralizing work.
posted by elizardbits at 10:44 AM on August 25, 2014 [4 favorites]
Having worked in private philanthropy for nearly a decade now I can tell you that it is really fucking demoralizing work.
posted by elizardbits at 10:44 AM on August 25, 2014 [4 favorites]
Thanks for the cites; I found 21,000 prostate cancer deaths to 41,000 breast cancer deaths, but that was from 2011.
I do think it's relevant how much of the money makes its way to research. But I also think schmod's point is relevant: how much of the money makes its way to promising research. The best guesses of experts should guide our efforts and expenditures, not the latest social media trend.
I also think there's a general problem with rejecting systematic analyses. We're simultaneously told that "purity of intentions" don't matter and that it's not the foundations fault for being effective. And yet we see the systematic racism and classism, we know these are general problems in the world and in our society, but we're hamstrung. If it's not Komen's fault for being popular, and it's not the donors fault for choosing breast cancer over diabetes, then whose fault is it?
Well, we see the answer in this thread: it's no one's fault except the critic. We shouldn't bother pointing this stuff out at all, it's too dour.
But I think everybody knows that racism kills black men disproportionately when it comes to police, and racism kills all African-Americans disproportionately when it comes to medicine, so why can't they make the link that racism kills non-white people disproportionately when it comes to crowd-funded research? I mean, obviously that's going to be true, and the statistics demonstrate it.
So why fight the criticism? It's true, it's relevant, and if you look into your heart you know you already knew it. Why not accept it, and accept what it means for your practices of giving and ice dumping, as well?
posted by anotherpanacea at 10:46 AM on August 25, 2014 [8 favorites]
I do think it's relevant how much of the money makes its way to research. But I also think schmod's point is relevant: how much of the money makes its way to promising research. The best guesses of experts should guide our efforts and expenditures, not the latest social media trend.
I also think there's a general problem with rejecting systematic analyses. We're simultaneously told that "purity of intentions" don't matter and that it's not the foundations fault for being effective. And yet we see the systematic racism and classism, we know these are general problems in the world and in our society, but we're hamstrung. If it's not Komen's fault for being popular, and it's not the donors fault for choosing breast cancer over diabetes, then whose fault is it?
Well, we see the answer in this thread: it's no one's fault except the critic. We shouldn't bother pointing this stuff out at all, it's too dour.
But I think everybody knows that racism kills black men disproportionately when it comes to police, and racism kills all African-Americans disproportionately when it comes to medicine, so why can't they make the link that racism kills non-white people disproportionately when it comes to crowd-funded research? I mean, obviously that's going to be true, and the statistics demonstrate it.
So why fight the criticism? It's true, it's relevant, and if you look into your heart you know you already knew it. Why not accept it, and accept what it means for your practices of giving and ice dumping, as well?
posted by anotherpanacea at 10:46 AM on August 25, 2014 [8 favorites]
Having worked in private philanthropy for nearly a decade now I can tell you that it is really fucking demoralizing work.
Why and how is it demoralizing?
posted by Brandon Blatcher at 10:47 AM on August 25, 2014
Why and how is it demoralizing?
posted by Brandon Blatcher at 10:47 AM on August 25, 2014
And then comes the backlash to the backlash, which precedes the backlash to the backlash to the backlash, and then everything on earth becomes a self-subsuming backlash to some part of a lash.
I'll be posting my video of self-flagellation soon. Not sure who I'll call out next for the backlash challenge. Or who I'll be donating to either, for that matter.
posted by Kabanos at 10:50 AM on August 25, 2014 [3 favorites]
I'll be posting my video of self-flagellation soon. Not sure who I'll call out next for the backlash challenge. Or who I'll be donating to either, for that matter.
posted by Kabanos at 10:50 AM on August 25, 2014 [3 favorites]
I feel like these ice bucket challenge criticism pieces are the equivalent of saying to someone "hey! if you did something that made you feel good about yourself, you shouldn't feel good about yourself because [reasons]." I won't be dumping a bucket of ice on my head any time soon because I don't think it's productive but I think this thing has done more good than harm so I'll stay out of it.
posted by kat518 at 10:53 AM on August 25, 2014 [1 favorite]
posted by kat518 at 10:53 AM on August 25, 2014 [1 favorite]
Man, there is some serious Spock "rational" fetishizing happening here. I think it's totally fine to support disease research on the basis of something silly like this ice bucket challenge. It's not fine if that's the only way people can be prodded to donate to disease research, but is that the issue at hand? If you care about some other charity, support and talk about that charity. Don't shit on the parade though.
posted by oceanjesse at 10:55 AM on August 25, 2014 [1 favorite]
posted by oceanjesse at 10:55 AM on August 25, 2014 [1 favorite]
I make more than a soup cook would. I could work that time, donate the money, and cause more soup-making to happen through the hiring of more soup chefs. In addition, volunteering at a soup kitchen does nothing to address the structural causes of poverty.
Spending my time volunteering at a soup kitchen is thus morally wrong.
Wait, what?
posted by conorh at 11:01 AM on August 25, 2014 [3 favorites]
Spending my time volunteering at a soup kitchen is thus morally wrong.
Wait, what?
posted by conorh at 11:01 AM on August 25, 2014 [3 favorites]
That Avidly piece was written by a friend of mine (who watched her father die from ALS) and I hope people read it even though I understand not everyone reads every article in an FPP. I found her comments about how the disease is not only tragic and terrible, but so, so expensive for the families to be very compelling.
posted by misskaz at 11:05 AM on August 25, 2014
posted by misskaz at 11:05 AM on August 25, 2014
While it's wonderful that this challenge is raising tons of money for a horrible disease, my biggest concern is donor retention. I work in fundraising, and I know that one of the most important things for a charity is to sustain and/or increase donations over time. Once this dies down (as it unfortunately inevitably will when the next thing comes along), how many people who gave during this challenge will give again when the next ask comes in the mail? How many will increase their giving? I just hope the ALS Foundation has plans for follow-up with current donors and a retention plan for the next 3-5 years.
posted by ElleElle at 11:07 AM on August 25, 2014 [6 favorites]
posted by ElleElle at 11:07 AM on August 25, 2014 [6 favorites]
Don't most charities just sell the names of donors for a quick buck?
posted by smackfu at 11:14 AM on August 25, 2014
posted by smackfu at 11:14 AM on August 25, 2014
I had a good rant on about this but deleted it.
I do not like most viral media campaigns, as a principle belief, due to the fact that more often than not, the original message and meaning of the campaign gets lost and subdued by the hype and spectacle, instead of the actual meaning of the actions (mainly, the action of actually donating money to charity/non-profits).
Yes, great, they made a lot of money for their charity.
Crap, this means that every other fucking charity is going to have some cockamamie "viral video challenge" as a standard part of their fundraising efforts from here on out. And then there will be "industry studies" and white-papers from the for profit consultants who sell their services to non-profits and we're going to be inundated with ideas on how to "go viral" with fundraising campaigns. Again. Just like the last time something like this happened and then faded away into the meme-pool.
I actually appreciate the criticisms. Yes, I am one of those people who likes to think about the broader implications of things and until all of those implications have been accounted for, I will continue to question the base assumptions of most people, and CHALLENGE them to think about things beyond their individual contributions. Because if none of us think beyond our own sphere of influence, our efforts will be diverted by those who did think about it.
posted by daq at 11:16 AM on August 25, 2014 [6 favorites]
I do not like most viral media campaigns, as a principle belief, due to the fact that more often than not, the original message and meaning of the campaign gets lost and subdued by the hype and spectacle, instead of the actual meaning of the actions (mainly, the action of actually donating money to charity/non-profits).
Yes, great, they made a lot of money for their charity.
Crap, this means that every other fucking charity is going to have some cockamamie "viral video challenge" as a standard part of their fundraising efforts from here on out. And then there will be "industry studies" and white-papers from the for profit consultants who sell their services to non-profits and we're going to be inundated with ideas on how to "go viral" with fundraising campaigns. Again. Just like the last time something like this happened and then faded away into the meme-pool.
I actually appreciate the criticisms. Yes, I am one of those people who likes to think about the broader implications of things and until all of those implications have been accounted for, I will continue to question the base assumptions of most people, and CHALLENGE them to think about things beyond their individual contributions. Because if none of us think beyond our own sphere of influence, our efforts will be diverted by those who did think about it.
posted by daq at 11:16 AM on August 25, 2014 [6 favorites]
misskaz: That Avidly piece was written by a friend of mine (who watched her father die from ALS) and I hope people read it even though I understand not everyone reads every article in an FPP. I found her comments about how the disease is not only tragic and terrible, but so, so expensive for the families to be very compelling.
From the Avidly piece:
From the Avidly piece:
One of the very hard lessons that I learned from my father’s and family’s experience of ALS is that we all submit to paying a fortune for a healthcare system and end-of-life services in which profits are the priority and patients and their families secondary at best, incidental at worst. Actual people—from specialized doctors at ALS clinics to the woman answering the phone for the hospice corporation—who expressed genuine care for my father and my family were the exception, not the rule. From this painful experience, I have come to conclude that we regularly and dangerously delude ourselves whenever we expect anything better from a for-profit healthcare system, when in every other way we accede to the system’s most destructive demands. This includes dousing ourselves with ice water instead of demanding a complete overhaul of our healthcare system, from research and treatment to how we pay for what is a basic human right. Such spectacular failures of our healthcare and justice systems, as we are seeing in Ferguson, make it hard not to conclude as well that human life has become merely incidental in an all-for-profit society.posted by flex at 11:22 AM on August 25, 2014 [6 favorites]
As for the social ills (related, of course, to the structural, and likely more insidious and resistant), what I have in mind is just how much trouble Americans still have with dealing with difference of any kind. This, to me, is what connects Ferguson and the Ice Bucket Challenge most immediately. As individuals and as a society, in everyday life and in emergencies, we still have almost no tolerance for any kind of visible difference —be it physical disability or a darker skin tone—from a “normal” that is white and able-bodied (not to mention male and middle class). This intolerance, now as ever, is rooted in fear—be it fear of becoming physically incapacitated, fear of being a victim of physical violence, or, most basically, fear of having one’s habits of mind and behavior challenged or changed. It’s hard for me not to think that the people who stared at or physically distanced themselves from my father wouldn’t also cross to the other side of the street or clutch their handbags tighter if they saw a young black man in a hoodie walking towards them. How many of these people have, by now, poured ice on their heads?
" It is short, immediately understandable, and like the most popular forms of slacktivism, it is easy to do, entertaining to watch, and narcissistically self-promoting."
Unlike, say, writing a contrarian blog post about the viral fad of the week. That comes purely from altruism.
posted by egoebelbecker at 11:23 AM on August 25, 2014 [9 favorites]
Unlike, say, writing a contrarian blog post about the viral fad of the week. That comes purely from altruism.
posted by egoebelbecker at 11:23 AM on August 25, 2014 [9 favorites]
Crap, this means that every other fucking charity is going to have some cockamamie "viral video challenge" as a standard part of their fundraising efforts from here on out. And then there will be "industry studies" and white-papers from the for profit consultants who sell their services to non-profits and we're going to be inundated with ideas on how to "go viral" with fundraising campaigns. Again. Just like the last time something like this happened and then faded away into the meme-pool.
Ok, so what are the broader implications of this? Some charities will find success with this method, and others won't. Hopefully the ones that won't will have thought far enough ahead to not let an exercise like this drain their coffers (and if they do then that's a sign of something wrong in itself.) The for-profit marketing consultants will get their pound of flesh, as they always do. People will grow tired and by the time they're asked to do the Hot Lead Challenge or whatever, they won't. The fad will wear out, and it's back to business as usual: bothering the super-rich and so on. Where's the big catastrophe at the end that hasn't already happened when people reached Peak Pink Ribbons or the endpoint of any number of charitable fads over the years?
posted by griphus at 11:27 AM on August 25, 2014 [2 favorites]
Ok, so what are the broader implications of this? Some charities will find success with this method, and others won't. Hopefully the ones that won't will have thought far enough ahead to not let an exercise like this drain their coffers (and if they do then that's a sign of something wrong in itself.) The for-profit marketing consultants will get their pound of flesh, as they always do. People will grow tired and by the time they're asked to do the Hot Lead Challenge or whatever, they won't. The fad will wear out, and it's back to business as usual: bothering the super-rich and so on. Where's the big catastrophe at the end that hasn't already happened when people reached Peak Pink Ribbons or the endpoint of any number of charitable fads over the years?
posted by griphus at 11:27 AM on August 25, 2014 [2 favorites]
Hell, I'm just sorry I wasn't the one to think of it as a fundraising idea for my own rare neuromuscular disease. Scott Gilmore will be happy to hear there's really very little research being done on it. (The bulk of the research going on is directed at the milder, more widespread forms of the disease, while the severe forms and the de novo mutations like I have generally aren't included. Oh, there's talk of clinical trials with autologous stem cells and neurotrophic growth factors someday, but at the rate it's going I doubt that will happen within my lifetime.)
I should start a Baldness Challenge wager. I'll bet you that baldness will be cured with stem cells long before I am. Curing baldness is hardly utilitarian either, but you better believe there's a lot of money being thrown at that problem.
posted by Soliloquy at 11:43 AM on August 25, 2014 [3 favorites]
I should start a Baldness Challenge wager. I'll bet you that baldness will be cured with stem cells long before I am. Curing baldness is hardly utilitarian either, but you better believe there's a lot of money being thrown at that problem.
posted by Soliloquy at 11:43 AM on August 25, 2014 [3 favorites]
What's silly here is that research on rare diseases often pays dividends in terms of treatment for common ones. Basic science is like that— you think you are looking for a treatment for ALS, and you may discover the cure for Alzheimer's.
So, so long as the charity is actually spending on medical research that is being well done, it doesn't matter whether you give to heart disease or ALS.
posted by Maias at 11:44 AM on August 25, 2014 [4 favorites]
So, so long as the charity is actually spending on medical research that is being well done, it doesn't matter whether you give to heart disease or ALS.
posted by Maias at 11:44 AM on August 25, 2014 [4 favorites]
Here is a chart.
That chart compares values proportional to the diameter of circles, giving a wildly inaccurate impression of the data. I can't believe that it is not intentionally misleading.
posted by CaseyB at 11:45 AM on August 25, 2014 [6 favorites]
That chart compares values proportional to the diameter of circles, giving a wildly inaccurate impression of the data. I can't believe that it is not intentionally misleading.
posted by CaseyB at 11:45 AM on August 25, 2014 [6 favorites]
Some points to consider:
1) The cost of bringing a single new drug to market is somewhere in the range of 1-5 billion dollars.
2) The failure rate for CNS drugs in Phase III clinical trials is >90%, so to a first approximation, one must produce 10 new drug candidates for every 1 approved drug.
3) "Approved drug" does not mean "successful drug", it means that the FDA has determined it provides some statistical benefit relative to the harm it causes.
4) In the field of neurodegenerative diseases, the benefit/harm margin for the small number of existing drugs has been exceedingly, tragically narrow.
I think it's great if more money goes towards helping with the medical costs of patients, but as far as treatment goes, this is a problem that $100 donations fundamentally cannot solve. If you want to make a difference on that end, lobby Congress to increase the NIH budget. Anything less is just blowing at a sail to make the boat go faster.
posted by dephlogisticated at 11:49 AM on August 25, 2014 [7 favorites]
1) The cost of bringing a single new drug to market is somewhere in the range of 1-5 billion dollars.
2) The failure rate for CNS drugs in Phase III clinical trials is >90%, so to a first approximation, one must produce 10 new drug candidates for every 1 approved drug.
3) "Approved drug" does not mean "successful drug", it means that the FDA has determined it provides some statistical benefit relative to the harm it causes.
4) In the field of neurodegenerative diseases, the benefit/harm margin for the small number of existing drugs has been exceedingly, tragically narrow.
I think it's great if more money goes towards helping with the medical costs of patients, but as far as treatment goes, this is a problem that $100 donations fundamentally cannot solve. If you want to make a difference on that end, lobby Congress to increase the NIH budget. Anything less is just blowing at a sail to make the boat go faster.
posted by dephlogisticated at 11:49 AM on August 25, 2014 [7 favorites]
Yeah what the hell is going on in that chart?
posted by griphus at 11:50 AM on August 25, 2014 [2 favorites]
posted by griphus at 11:50 AM on August 25, 2014 [2 favorites]
The point I was making with my earlier comment is that the Ice Bucket Challenge isn't asking for people's charitable time, effort, and money. It's entertainment. When a bunch of kids get their mom to film them getting ice water dumped and post it to Facebook, that's almost certainly not time they would have been working at the homeless shelter or money they were planning to send to Doctors Without Borders. It's time they would have been watching Minecraft YouTube videos and money they would have spent at Dairy Queen.
Anything that gets people to use entertainment time more creatively and proactively and spend money to help other people rather than boosting Berkshire Hathaway's bottom line is a win (and that it's this successful seems like sheer random luck). Complaining that it isn't designed and targeted in a maximally rational way isn't just making a theoretical perfect the enemy of an actual good. It's a complete misunderstanding of what this thing is and why it happened.
posted by straight at 11:57 AM on August 25, 2014 [2 favorites]
Anything that gets people to use entertainment time more creatively and proactively and spend money to help other people rather than boosting Berkshire Hathaway's bottom line is a win (and that it's this successful seems like sheer random luck). Complaining that it isn't designed and targeted in a maximally rational way isn't just making a theoretical perfect the enemy of an actual good. It's a complete misunderstanding of what this thing is and why it happened.
posted by straight at 11:57 AM on August 25, 2014 [2 favorites]
I get the backlash against criticism of the ice bucket challenge, but it's frustrating to see the lack of awareness about funding cuts to agencies that can afford to run costly clinical trials for drug treatments for such diseases. Just a few years ago, a House subcommittee voted to completely defund the Agency for Healthcare Research and Quality, an important funder of health services research, as well as cut the Dept. of Health and Human Services' budget by a third (just as the ACA was being implemented!). And recently, researchers' success rates in getting NIH awards has slipped considerably, further hampering well-funded inquiry into cures for ALS and other serious conditions. One recent bright spot is the VA decided a while back deciding to categorize ALS as a service-connected disability, allowing full benefits and medical coverage for those with the disease. Generally, though, the agencies we have to fund appropriate research (not to mention public health funding) are hamstrung by funding constraints and folks don't seem all that aware of that fact.
posted by faux ami at 12:01 PM on August 25, 2014 [12 favorites]
posted by faux ami at 12:01 PM on August 25, 2014 [12 favorites]
Having worked in private philanthropy for nearly a decade now I can tell you that it is really fucking demoralizing work.
Why and how is it demoralizing?
I've worked in the charitable sector my whole career. My current job is with the local crisis centre (24 hour phone lines, online chat, in person crisis counselling). So, now that I've established some credibility, here are a few factors that make it demoralizing:
1. The constant grind of chasing funding. It's a treadmill; apply for grants and contracts from government and private foundations. Report on what you did with those grants you successfully got. The true pain is the number of funders who insist on only funding "innovative" work (that also must be based on "best practices"). We can't always be doing something innovative; the core of what we do is important, time-tested, and a best practice - but how do we fund that, when we always have to be innovative? And how much time do we spend on seeking and reporting on funding as opposed to - you know - actually doing the work we exist to do? I'm lucky - I work for an organization that can afford a person like me to manage the reporting on our grants and contracts, as well as contribute heavily to the new funding applications. Most smaller places aren't, and it becomes a very hard juggling act when you have to both provide services and deal with the funding challenges. And here's the catch - every one of those grants and contracts relates to someones position. Don't get it renewed? Can't replace it? Someone just lost their job.
2. The constant assumption that your organization isn't efficient, like a "real" business. We are efficient; we have to be. Most of those contracts we get have a hard limit on the administrative portion of what they fund - 10% of total contract value. That includes things like getting our audit done (a yearly requirement of being a charity), our rent, our utilities, our insurance, and so forth. We don't tend to get charitable discounts on any of those costs. We run on a very slim margin. At one time, our local United Way brought in some people who had retired from the business sector. They were going to work with the United Way as volunteers, offering advice to other funded organizations that needed some help with structure, strategy, budgeting, etc. As part of getting them ready, the United Way brought them to visit us - to see a well-functioning organization. After we had spent a couple of hours giving them the tour, explaining our services and structure and all that, they started asking about our budget - they were stunned to learn that our budget was about a third less than the figure they had in their heads after hearing everything we did.
3. The constant assumption that you, as a staff person in a charity, are somehow less knowledgeable or skilled than counterparts in the for-profit world. I see this mostly with our Board of Directors, who make all kinds of comments about us; our past Board Chair was floored when we brought her a revised Policy and Procedural Manual that needed to be approved by the Board. She spent a month reviewing it, and her comments were revealing - she was surprised at the depth, complexity and thoroughness of the policies we had, and later asked if she could take some to share with her workplace as models of how certain policies could be crafted. She cautioned the other Board Members not to assume anything about us after reading it.
4. This could fit in with number 1 - but the constant chase for donors is another grind, different than the contracts one. You have to find them, cultivate them, and keep them engaged. This isn't a bad thing - I expect that people who give us money should expect some level of engagement with and understanding of the organization they donate to - but it requires time and resources. Again, I am fortunate to work for an organization that has the resources to have someone skilled at that. She could probably speak more to the pain of that role.
5. The constant need to wear multiple hats. My current job is primarily responsible for contract and grant management and reporting. In addition, I am the organizational IT person and responsible for managing the relationships and contracts with our external IT support groups. I am also the facilities person - so if something is broken, I have to figure out how to fix it or who can fix it at a reasonable cost. I have to deal with the landlord when something in the building is wrong. Someone needs new equipment? I have to chase down quotes, and deal with the question of whether or not we can find someone to donate it (hint: donated equipment tends to be (a) old; (b) well loved; (c) break and not be under warranty). Flipping between these multiple roles is tiring after a while - my background is not IT; nor do I understand things about heating or plumbing or whatever else. But someone needs to make sure the work gets done, and try to make sure that we are getting what we need, without paying too much, and that we aren't setting ourselves up for trouble down the line (i.e., a quick fix is sometimes the wrong fix).
6. High consequences for failure. My biggest project in the last three years was the replacement of our telephone system. Given that we are a 24 hour crisis telephone service, you can imagine the stress around that - first find someone willing to fund; then conduct an RFP process to select your vendor (and justify that selection to your Board and your funder); design the system so that it works the way you need it too (and adapt existing processes that can't be replicated with the new system); train everyone (about 350 people here, volunteers and staff); cut over with a minimum (preferably no) downtime (one of the techs I was working with on it described it as "replacing the engine in your car, while it's driving, on the highway"). A mis-step anywhere along that process? We're out a lot of money (back to fundraising!), we have a lot of questions to answer from funders, from staff and volunteers, and our credibility has taken a big hit.
That example is a project based one, but it comes down to this - a charity has a social contract with the community it serves. We get funded based on living up to that contract (in my organization's case, it's that we are available 24/7/365; we provide our services free of cost to the client; we are confidential; and that we are accountable and responsible with the money we receive). Start messing those up? You lose the trust of your community - that means losing clients, losing funders, and eventually losing the organization. We work here because we believe in the cause and purpose of the organization, and at times it's really, really anxiety provoking to be reminded that what you are working on has consequences that affect not only everyone in the organization but potentially the health of the organization as a whole.
7. The demand doesn't stop. From the funders, from the clients, from the community. You don't get a break. Even when you are on vacation, you can put away all the devices that keep you connected - but when someone asks what you do, you remember that you are talking to a potential client (maybe not of my organization, but someone else's) and/or a potential donor and/or a potential volunteer.
8. The broad brush of "bad" charities. Yes, there are bad charities out there that use their funds irresponsibly, that do things that are not ethical, that are generally not good organizations. When one of them surfaces, we all get painted with that brush. The closest I have seen in the for-profit sector has been the reaction to Wall Street in recent years, but by and large a bad corporate actor seems to me to be dismissed as a "bad apple" while the rest of a sector just chugs along.
That's longer than I wanted and I've spent my lunch hour on it. I could probably go on and on, and if you got someone else from a different organization - or even a different position in my organization - you would likely get some new and different points.
posted by nubs at 12:02 PM on August 25, 2014 [31 favorites]
Why and how is it demoralizing?
I've worked in the charitable sector my whole career. My current job is with the local crisis centre (24 hour phone lines, online chat, in person crisis counselling). So, now that I've established some credibility, here are a few factors that make it demoralizing:
1. The constant grind of chasing funding. It's a treadmill; apply for grants and contracts from government and private foundations. Report on what you did with those grants you successfully got. The true pain is the number of funders who insist on only funding "innovative" work (that also must be based on "best practices"). We can't always be doing something innovative; the core of what we do is important, time-tested, and a best practice - but how do we fund that, when we always have to be innovative? And how much time do we spend on seeking and reporting on funding as opposed to - you know - actually doing the work we exist to do? I'm lucky - I work for an organization that can afford a person like me to manage the reporting on our grants and contracts, as well as contribute heavily to the new funding applications. Most smaller places aren't, and it becomes a very hard juggling act when you have to both provide services and deal with the funding challenges. And here's the catch - every one of those grants and contracts relates to someones position. Don't get it renewed? Can't replace it? Someone just lost their job.
2. The constant assumption that your organization isn't efficient, like a "real" business. We are efficient; we have to be. Most of those contracts we get have a hard limit on the administrative portion of what they fund - 10% of total contract value. That includes things like getting our audit done (a yearly requirement of being a charity), our rent, our utilities, our insurance, and so forth. We don't tend to get charitable discounts on any of those costs. We run on a very slim margin. At one time, our local United Way brought in some people who had retired from the business sector. They were going to work with the United Way as volunteers, offering advice to other funded organizations that needed some help with structure, strategy, budgeting, etc. As part of getting them ready, the United Way brought them to visit us - to see a well-functioning organization. After we had spent a couple of hours giving them the tour, explaining our services and structure and all that, they started asking about our budget - they were stunned to learn that our budget was about a third less than the figure they had in their heads after hearing everything we did.
3. The constant assumption that you, as a staff person in a charity, are somehow less knowledgeable or skilled than counterparts in the for-profit world. I see this mostly with our Board of Directors, who make all kinds of comments about us; our past Board Chair was floored when we brought her a revised Policy and Procedural Manual that needed to be approved by the Board. She spent a month reviewing it, and her comments were revealing - she was surprised at the depth, complexity and thoroughness of the policies we had, and later asked if she could take some to share with her workplace as models of how certain policies could be crafted. She cautioned the other Board Members not to assume anything about us after reading it.
4. This could fit in with number 1 - but the constant chase for donors is another grind, different than the contracts one. You have to find them, cultivate them, and keep them engaged. This isn't a bad thing - I expect that people who give us money should expect some level of engagement with and understanding of the organization they donate to - but it requires time and resources. Again, I am fortunate to work for an organization that has the resources to have someone skilled at that. She could probably speak more to the pain of that role.
5. The constant need to wear multiple hats. My current job is primarily responsible for contract and grant management and reporting. In addition, I am the organizational IT person and responsible for managing the relationships and contracts with our external IT support groups. I am also the facilities person - so if something is broken, I have to figure out how to fix it or who can fix it at a reasonable cost. I have to deal with the landlord when something in the building is wrong. Someone needs new equipment? I have to chase down quotes, and deal with the question of whether or not we can find someone to donate it (hint: donated equipment tends to be (a) old; (b) well loved; (c) break and not be under warranty). Flipping between these multiple roles is tiring after a while - my background is not IT; nor do I understand things about heating or plumbing or whatever else. But someone needs to make sure the work gets done, and try to make sure that we are getting what we need, without paying too much, and that we aren't setting ourselves up for trouble down the line (i.e., a quick fix is sometimes the wrong fix).
6. High consequences for failure. My biggest project in the last three years was the replacement of our telephone system. Given that we are a 24 hour crisis telephone service, you can imagine the stress around that - first find someone willing to fund; then conduct an RFP process to select your vendor (and justify that selection to your Board and your funder); design the system so that it works the way you need it too (and adapt existing processes that can't be replicated with the new system); train everyone (about 350 people here, volunteers and staff); cut over with a minimum (preferably no) downtime (one of the techs I was working with on it described it as "replacing the engine in your car, while it's driving, on the highway"). A mis-step anywhere along that process? We're out a lot of money (back to fundraising!), we have a lot of questions to answer from funders, from staff and volunteers, and our credibility has taken a big hit.
That example is a project based one, but it comes down to this - a charity has a social contract with the community it serves. We get funded based on living up to that contract (in my organization's case, it's that we are available 24/7/365; we provide our services free of cost to the client; we are confidential; and that we are accountable and responsible with the money we receive). Start messing those up? You lose the trust of your community - that means losing clients, losing funders, and eventually losing the organization. We work here because we believe in the cause and purpose of the organization, and at times it's really, really anxiety provoking to be reminded that what you are working on has consequences that affect not only everyone in the organization but potentially the health of the organization as a whole.
7. The demand doesn't stop. From the funders, from the clients, from the community. You don't get a break. Even when you are on vacation, you can put away all the devices that keep you connected - but when someone asks what you do, you remember that you are talking to a potential client (maybe not of my organization, but someone else's) and/or a potential donor and/or a potential volunteer.
8. The broad brush of "bad" charities. Yes, there are bad charities out there that use their funds irresponsibly, that do things that are not ethical, that are generally not good organizations. When one of them surfaces, we all get painted with that brush. The closest I have seen in the for-profit sector has been the reaction to Wall Street in recent years, but by and large a bad corporate actor seems to me to be dismissed as a "bad apple" while the rest of a sector just chugs along.
That's longer than I wanted and I've spent my lunch hour on it. I could probably go on and on, and if you got someone else from a different organization - or even a different position in my organization - you would likely get some new and different points.
posted by nubs at 12:02 PM on August 25, 2014 [31 favorites]
Yeah what the hell is going on in that chart?
Could you explain your concern? When I look at the chart, the circles appear to be correctly drawn. For instance, HIV/AIDs receives ten times less money than prostate cancer and the circle appears to be ten times smaller. Roughly 3.5 times as many people die of heart disease as COPD, and the circle is about three to four times as large.
posted by anotherpanacea at 12:05 PM on August 25, 2014
Could you explain your concern? When I look at the chart, the circles appear to be correctly drawn. For instance, HIV/AIDs receives ten times less money than prostate cancer and the circle appears to be ten times smaller. Roughly 3.5 times as many people die of heart disease as COPD, and the circle is about three to four times as large.
posted by anotherpanacea at 12:05 PM on August 25, 2014
Yeah what the hell is going on in that chart?
It's a mess. Choosing one charity to represent each disease is so wildly simplistic and lazy it's absurd. The Ride To End AIDS, the one stand-in for that disease, counts for $14 million but the Pediatric AIDS Foundation's 2011 budget was over $164 million, and AIDS Project Los Angeles over $18 million. How the hell did they decide to use one organization to represent AIDS funding? What a piece of junk that chart is.
Vox.com: incoherent charts r us.
posted by mediareport at 12:12 PM on August 25, 2014 [3 favorites]
It's a mess. Choosing one charity to represent each disease is so wildly simplistic and lazy it's absurd. The Ride To End AIDS, the one stand-in for that disease, counts for $14 million but the Pediatric AIDS Foundation's 2011 budget was over $164 million, and AIDS Project Los Angeles over $18 million. How the hell did they decide to use one organization to represent AIDS funding? What a piece of junk that chart is.
Vox.com: incoherent charts r us.
posted by mediareport at 12:12 PM on August 25, 2014 [3 favorites]
When I look at the chart, the circles appear to be correctly drawn.
They are drawn using the diameter as the variable, but the perceived size of a shape will be based on the area. This is most noticeable in the pink and orange circles. The pink is only representing a value 75% greater than the orange, but the pink circle could hold three or four of the orange circles.
posted by smackfu at 12:15 PM on August 25, 2014 [2 favorites]
They are drawn using the diameter as the variable, but the perceived size of a shape will be based on the area. This is most noticeable in the pink and orange circles. The pink is only representing a value 75% greater than the orange, but the pink circle could hold three or four of the orange circles.
posted by smackfu at 12:15 PM on August 25, 2014 [2 favorites]
Could you explain your concern?
By juxtaposing similar-sized circles, there's an implication of a some sort of equivalency between donations and number of deaths that doesn't exist and also an equivalency between one charitable organization chosen without context and all deaths of a certain affliction.
posted by griphus at 12:18 PM on August 25, 2014 [1 favorite]
By juxtaposing similar-sized circles, there's an implication of a some sort of equivalency between donations and number of deaths that doesn't exist and also an equivalency between one charitable organization chosen without context and all deaths of a certain affliction.
posted by griphus at 12:18 PM on August 25, 2014 [1 favorite]
Like, is funding for heart disease supposed to be closer to $300M to make the circles match so the donations even out with the deaths? Why? Who picked these numbers to be juxtaposed?
posted by griphus at 12:21 PM on August 25, 2014 [1 favorite]
posted by griphus at 12:21 PM on August 25, 2014 [1 favorite]
Okay, that seems right.
I think the bigger problem is using a single charity, but the data visualization issues are relevant here too. (For whatever reason using the the diameter relationship makes sense to me, but I can see the argument for areas.)
posted by anotherpanacea at 12:27 PM on August 25, 2014
I think the bigger problem is using a single charity, but the data visualization issues are relevant here too. (For whatever reason using the the diameter relationship makes sense to me, but I can see the argument for areas.)
posted by anotherpanacea at 12:27 PM on August 25, 2014
Any suggestions for worthy charities to donate to as alternatives?
posted by clockworkjoe at 12:33 PM on August 25, 2014
posted by clockworkjoe at 12:33 PM on August 25, 2014
For whatever reason using the the diameter relationship makes sense to me, but I can see the argument for areas.
IIRC, there is a section in How To Lie With Statistics about how the confusion between diameter and area is exactly why you should never use circles in this way - unless, of course, you want to distort your information.
posted by Sticherbeast at 12:36 PM on August 25, 2014 [6 favorites]
IIRC, there is a section in How To Lie With Statistics about how the confusion between diameter and area is exactly why you should never use circles in this way - unless, of course, you want to distort your information.
posted by Sticherbeast at 12:36 PM on August 25, 2014 [6 favorites]
griphus: " Ok, so what are the broader implications of this? Some charities will find success with this method, and others won't. Hopefully the ones that won't will have thought far enough ahead to not let an exercise like this drain their coffers (and if they do then that's a sign of something wrong in itself.) The for-profit marketing consultants will get their pound of flesh, as they always do. People will grow tired and by the time they're asked to do the Hot Lead Challenge or whatever, they won't. The fad will wear out, and it's back to business as usual: bothering the super-rich and so on. Where's the big catastrophe at the end that hasn't already happened when people reached Peak Pink Ribbons or the endpoint of any number of charitable fads over the years?"
Well, frankly, the time and energy spent by the staff working for the charity/non-profit that ends up being spent for naught is one aspect. It may not drain the coffers, but the staff time to deal with these kinds of campaigns on the backend is not trivial. I mean, I get the appeal of this kind of thing. The original Ice Bucket Challenge was a goofy awareness thing that some guys did for a friend to show support for something personal to them. That's cool. They also donated money to a charity. Awesome on them. And the spontaneity of the origin is worthy of praise. But when you go about trying to mimic that, to monetize that effect, it is literally "and then a miracle happens." There is no guarantee. And a lot of times, the people who attempt to create these "viral campaigns" really are clueless as to the threshold values that make these things "work" as fundraising efforts. The "critical mass" theory, for one, the "least effort, greatest reward" part of social media dynamics, the casual nature of "in-group" identity politics, and the greatest challenge, in creating a narrative that sets up a feedback cycle that is self-sustaining (yes, that's a challenging thing to discuss. I don't even have all the details, but it's a relational theory that incorporates a lot of inherent sociological dynamics, which are sadly lacking in rigorous academic studies, at least that I could find).
I mean, yes, I have a lot of major issues with society and social awareness (or the lack there of). I know for a lot of people they do not want to put a lot of time and though or effort into anything that does not directly affect them. This would be why I support higher taxes and broader governmental funding for medical and scientific research. The dividends of that investment are much more substantial and much more widely dispersed through the whole of society (see the Internet, as one prime example of publicly funded projects that radically changed the modern world, or vaccination programs from the 1940's and 1950's, which all but eliminated polio). I am not trying to make people feel bad about participating in the Ice Bucket Challenge, but I am asking them to think about how much more fun it would be to actually have these types of funds be about "crowd-sourcing" their personal pet medical issue, instead of an elimination contest where all the other charities now have to spend time and energy for a smaller and smaller pool of funds because everyone blew their charity spending for the year already. I would love it if the Ice Bucket Challenge was about raising money to buy the doctors who cured ALS a new Porche, instead of paying for their rent and medical school loans, and maybe a new lab (or more likely, leasing space in an existing lab).
But, you know, the world is how it is, and I'm just trying to raise awareness that it could be better, it should be better, and maybe I should start a viral campaign or something.
posted by daq at 12:37 PM on August 25, 2014 [2 favorites]
Well, frankly, the time and energy spent by the staff working for the charity/non-profit that ends up being spent for naught is one aspect. It may not drain the coffers, but the staff time to deal with these kinds of campaigns on the backend is not trivial. I mean, I get the appeal of this kind of thing. The original Ice Bucket Challenge was a goofy awareness thing that some guys did for a friend to show support for something personal to them. That's cool. They also donated money to a charity. Awesome on them. And the spontaneity of the origin is worthy of praise. But when you go about trying to mimic that, to monetize that effect, it is literally "and then a miracle happens." There is no guarantee. And a lot of times, the people who attempt to create these "viral campaigns" really are clueless as to the threshold values that make these things "work" as fundraising efforts. The "critical mass" theory, for one, the "least effort, greatest reward" part of social media dynamics, the casual nature of "in-group" identity politics, and the greatest challenge, in creating a narrative that sets up a feedback cycle that is self-sustaining (yes, that's a challenging thing to discuss. I don't even have all the details, but it's a relational theory that incorporates a lot of inherent sociological dynamics, which are sadly lacking in rigorous academic studies, at least that I could find).
I mean, yes, I have a lot of major issues with society and social awareness (or the lack there of). I know for a lot of people they do not want to put a lot of time and though or effort into anything that does not directly affect them. This would be why I support higher taxes and broader governmental funding for medical and scientific research. The dividends of that investment are much more substantial and much more widely dispersed through the whole of society (see the Internet, as one prime example of publicly funded projects that radically changed the modern world, or vaccination programs from the 1940's and 1950's, which all but eliminated polio). I am not trying to make people feel bad about participating in the Ice Bucket Challenge, but I am asking them to think about how much more fun it would be to actually have these types of funds be about "crowd-sourcing" their personal pet medical issue, instead of an elimination contest where all the other charities now have to spend time and energy for a smaller and smaller pool of funds because everyone blew their charity spending for the year already. I would love it if the Ice Bucket Challenge was about raising money to buy the doctors who cured ALS a new Porche, instead of paying for their rent and medical school loans, and maybe a new lab (or more likely, leasing space in an existing lab).
But, you know, the world is how it is, and I'm just trying to raise awareness that it could be better, it should be better, and maybe I should start a viral campaign or something.
posted by daq at 12:37 PM on August 25, 2014 [2 favorites]
Any suggestions for worthy charities to donate to as alternatives?
posted by clockworkjoe at 12:33 PM on August 25 [+] [!]
Your local Democratic Party? Asking them to increase taxes and funding for all public medical research?
Charity is/as personal politics (maybe).
posted by daq at 12:38 PM on August 25, 2014 [2 favorites]
posted by clockworkjoe at 12:33 PM on August 25 [+] [!]
Your local Democratic Party? Asking them to increase taxes and funding for all public medical research?
Charity is/as personal politics (maybe).
posted by daq at 12:38 PM on August 25, 2014 [2 favorites]
One time I attended a large fancy party hosted at a gigantic mansion owned by the guy running the Calabasas office of the ALS Association. It made me wonder how charities work.
Yes, there are a lot of non-profits and "charities" that just function as ways to get money from people and give them to businesses and directors. It's pretty easy to google "worst charities" and see how some "charities" are just scams that fund solication & call centers and whatnot.
That said, there is also a widespread misconception that non-profit organizations ought to pay their staff poorly. As grouse points out, $150k to direct an $20+ million dollar organization IS pretty modest. When you have large, complex organizations with big budgets that require complex and expert management, you damn well better believe that you're going to have to offer a good wage to the people who run them.
This is regardless of what an organization is allowed to do with its profits based on the paperwork that established that organization.
posted by entropone at 12:43 PM on August 25, 2014 [2 favorites]
Yes, there are a lot of non-profits and "charities" that just function as ways to get money from people and give them to businesses and directors. It's pretty easy to google "worst charities" and see how some "charities" are just scams that fund solication & call centers and whatnot.
That said, there is also a widespread misconception that non-profit organizations ought to pay their staff poorly. As grouse points out, $150k to direct an $20+ million dollar organization IS pretty modest. When you have large, complex organizations with big budgets that require complex and expert management, you damn well better believe that you're going to have to offer a good wage to the people who run them.
This is regardless of what an organization is allowed to do with its profits based on the paperwork that established that organization.
posted by entropone at 12:43 PM on August 25, 2014 [2 favorites]
When you have large, complex organizations with big budgets that require complex and expert management, you damn well better believe that you're going to have to offer a good wage to the people who run them.
Not to mention, isn't "running a charity" a favorite job for people who are already super-rich through other means? Just because the CEO of a charity has a big fancy house doesn't mean that CEO bought it with the charity's money.
posted by like_a_friend at 12:53 PM on August 25, 2014 [2 favorites]
Not to mention, isn't "running a charity" a favorite job for people who are already super-rich through other means? Just because the CEO of a charity has a big fancy house doesn't mean that CEO bought it with the charity's money.
posted by like_a_friend at 12:53 PM on August 25, 2014 [2 favorites]
IIRC, there is a section in How To Lie With Statistics...
That book should be required reading for everyone with eyes and a brain.
posted by griphus at 12:53 PM on August 25, 2014 [3 favorites]
That book should be required reading for everyone with eyes and a brain.
posted by griphus at 12:53 PM on August 25, 2014 [3 favorites]
Think The ALS Ice Bucket Challenge Is Stupid? You're Wrong.
posted by phearlez at 12:55 PM on August 25, 2014
posted by phearlez at 12:55 PM on August 25, 2014
Any suggestions for worthy charities to donate to as alternatives?
I'm fond of large medical research charities with a large research scope. These charities have infrastructure for reviewing and selecting the best grant applications from a large pool, so I worry less about the money getting siloed into one disease, and it means researchers spend less time fulfilling extra administrative requirements for each individual sponsor. For cancer, this means entities like the American Cancer Society or Canadian Cancer Society. Both of these do spend a lot of money on direct patient support and prevention. These are worthwhile efforts, but if you want something more focused on research you can look into things like the Terry Fox Research Institute, which spends 87 percent of its expenses on research grants.
posted by grouse at 12:59 PM on August 25, 2014 [2 favorites]
I'm fond of large medical research charities with a large research scope. These charities have infrastructure for reviewing and selecting the best grant applications from a large pool, so I worry less about the money getting siloed into one disease, and it means researchers spend less time fulfilling extra administrative requirements for each individual sponsor. For cancer, this means entities like the American Cancer Society or Canadian Cancer Society. Both of these do spend a lot of money on direct patient support and prevention. These are worthwhile efforts, but if you want something more focused on research you can look into things like the Terry Fox Research Institute, which spends 87 percent of its expenses on research grants.
posted by grouse at 12:59 PM on August 25, 2014 [2 favorites]
Think The ALS Ice Bucket Challenge Is Stupid? You're Wrong.
What if the reasons you think it's stupid (like, say, the fact that it reinforces systemic racism around issues like this) aren't covered in his three possible reasons* you're wrong. Is he right? Are you still wrong?
*Which are really one reason--"It's raising money."
posted by OmieWise at 1:05 PM on August 25, 2014
What if the reasons you think it's stupid (like, say, the fact that it reinforces systemic racism around issues like this) aren't covered in his three possible reasons* you're wrong. Is he right? Are you still wrong?
*Which are really one reason--"It's raising money."
posted by OmieWise at 1:05 PM on August 25, 2014
Any suggestions for worthy charities to donate to as alternatives?
What are things you personally care about? there's probably a charity connected with some of them.
posted by EmpressCallipygos at 1:07 PM on August 25, 2014
What are things you personally care about? there's probably a charity connected with some of them.
posted by EmpressCallipygos at 1:07 PM on August 25, 2014
That Forbes piece, to me, reads like a weak sauce excuse, trying to promote "charitable giving" as a better alternative to government funding of medical research. Of course, it's Forbes, and what do I expect.
Their assessment of the Quartz piece ignores the well sourced details about the psychological effects of charitable giving, altruism-lite "awareness", and other fun things, like the major difference between clicking "like" on a Facebook campaign, and actually doing the research on charities and assessing, rationally, the best organizations to donate to. He also fails to address the assertion that "giving pocket change is the correct response to every social ill," which I think is the main criticism of the Quartz article.
I think the best meme I can offer right now is "And then?", as in, you dumped water on your head and donated to charity, and then you did what? I think the whole point of the majority of the criticisms is that for most people, they will say to themselves "I gave at the office" and then go right on ignoring the problem until the next major funding drive that tickles their fancy. Or the next time the ALS comes knocking for money (because now those donors are in the donor database), they'll unsubscribe from the newsletter until the next big meme-able campaign (which will likely either be a rehash of this one, or something trying to top this one).
It's not good enough for a one-off successful campaign. In fact, that one-off campaign creates a whole new problem. Now, every other charity HAS to come up with something catchy, witty, funny, or entertaining (we all know that plucking the heartstrings tends to backfire badly, see the sad puppy/Sarah McLachlan video from a few years ago).
Yes, this viral campaign was successful, this time.
Just like every one before it, that we have all collectively forgotten about.
posted by daq at 1:07 PM on August 25, 2014 [3 favorites]
Their assessment of the Quartz piece ignores the well sourced details about the psychological effects of charitable giving, altruism-lite "awareness", and other fun things, like the major difference between clicking "like" on a Facebook campaign, and actually doing the research on charities and assessing, rationally, the best organizations to donate to. He also fails to address the assertion that "giving pocket change is the correct response to every social ill," which I think is the main criticism of the Quartz article.
I think the best meme I can offer right now is "And then?", as in, you dumped water on your head and donated to charity, and then you did what? I think the whole point of the majority of the criticisms is that for most people, they will say to themselves "I gave at the office" and then go right on ignoring the problem until the next major funding drive that tickles their fancy. Or the next time the ALS comes knocking for money (because now those donors are in the donor database), they'll unsubscribe from the newsletter until the next big meme-able campaign (which will likely either be a rehash of this one, or something trying to top this one).
It's not good enough for a one-off successful campaign. In fact, that one-off campaign creates a whole new problem. Now, every other charity HAS to come up with something catchy, witty, funny, or entertaining (we all know that plucking the heartstrings tends to backfire badly, see the sad puppy/Sarah McLachlan video from a few years ago).
Yes, this viral campaign was successful, this time.
Just like every one before it, that we have all collectively forgotten about.
posted by daq at 1:07 PM on August 25, 2014 [3 favorites]
My SO works with people afflicted by ALS. She specializes in speech generative devices (SGD) for people with debilitating diseases affecting speech and eating -- lots of cancer patients, but also cerebral palsy, nervous system injuries, and others. Once a month they hold a clinic just for ALS patients, and she comes home just devastated. She takes a lot of solace in her work in finding small ways for people to (often drastically) improve their lives (being able to eat or communicate again can be such huge things), but with ALS, there just isn't all that much that can be done. It's heartbreaking.
(If I can make an aside, this year, Medicare made a lot of, in my opinion, cruel cuts to funding for some of the most vulnerable and helpless populations, cutting them off from access to devices that cost very little comparatively, but produce enormous improvements in these peoples' quality of life, and the lives of their families and caregivers. The Center for Medicare Advocacy has a relatively simple online form to send emails and messages to your elected representatives, if you're so inclined. -- Note: I am not a direct beneficiary of this organization.)
So naturally, I have been incredibly pleased to see this issue get so much attention. Just as naturally, though, a backlash was inevitable. I've been frustrated to see a lot of people I otherwise respected fall prey to cynicism or knee-jerk rejection of popular causes simply because they've been popularly embraced. People are having fun, and donating money to a good cause. Who cares if their reasons aren't ethically pure enough? It's certainly better than what we had before.
However, the one criticism I've seen that gave me pause came from Jacobin Magazine's Kate Redburn, who made a distinction between the righteousness of the cause and the underlying injustice of our unequal financial system that created the need for the non-profit mechanism in the first place:
posted by gern at 1:45 PM on August 25, 2014 [19 favorites]
(If I can make an aside, this year, Medicare made a lot of, in my opinion, cruel cuts to funding for some of the most vulnerable and helpless populations, cutting them off from access to devices that cost very little comparatively, but produce enormous improvements in these peoples' quality of life, and the lives of their families and caregivers. The Center for Medicare Advocacy has a relatively simple online form to send emails and messages to your elected representatives, if you're so inclined. -- Note: I am not a direct beneficiary of this organization.)
So naturally, I have been incredibly pleased to see this issue get so much attention. Just as naturally, though, a backlash was inevitable. I've been frustrated to see a lot of people I otherwise respected fall prey to cynicism or knee-jerk rejection of popular causes simply because they've been popularly embraced. People are having fun, and donating money to a good cause. Who cares if their reasons aren't ethically pure enough? It's certainly better than what we had before.
However, the one criticism I've seen that gave me pause came from Jacobin Magazine's Kate Redburn, who made a distinction between the righteousness of the cause and the underlying injustice of our unequal financial system that created the need for the non-profit mechanism in the first place:
When I saw my first ALS Ice Bucket video, I got the same knot in my stomach as when public school teacher friends post classroom supply fundraisers on GoFundMe.org. Why must professionals beg for our sympathy and attention in order to properly fund their work? Health and education are social rights that should be amply provided for by a democratic government, not left to the fancies of individual donors.She goes on to say (or, rather, to quote) that "the master’s tools cannot dismantle the master’s house," which is a fantastic way to illustrate the current conundrum. The millionaires in Congress have slashed billions in funding from the NIH, making the impressive sums raised by the Ice Bucket Challenge seem paltry by comparison. Our whacked sense of budgetary priorities in this country has made it impossible to truly address the inherent injustices in the system. So while I wholeheartedly support the spirit of the challenge and I truly hope it makes some difference for the people affected by this awful disease, I also despair that it might just be a symptom of a much larger problem that I have no idea how to fix, or where to even start.
We’ve been reduced to this reality by a combination of austerity politics and the growing non-profit industrial complex. Underneath their laudable aims and local successes, non-profits are beholden to the methods of funding which allow them to continue their work. It’s nearly impossible to challenge the unequal distribution of power and resources when your initiatives must be made palatable to ruling class philanthropists, whose wealth is a product of exploitation.
posted by gern at 1:45 PM on August 25, 2014 [19 favorites]
If I am presented with the choice of
posted by phearlez at 2:13 PM on August 25, 2014 [2 favorites]
- individual donations and charity campaigns
- changing the structure of society such that necessary projects and missions are funded without needing to beg
posted by phearlez at 2:13 PM on August 25, 2014 [2 favorites]
The ones grumbling about how there are bigger problem diseases to donate to are annoying me. But on the other hand...maybe we should all be donating to stem cell research?
(And I say this as someone who keeps grumbling about the wasted water on these things.)
posted by jenfullmoon at 2:27 PM on August 25, 2014 [1 favorite]
(And I say this as someone who keeps grumbling about the wasted water on these things.)
posted by jenfullmoon at 2:27 PM on August 25, 2014 [1 favorite]
It still irks me that it's wasting water. If I was in a country where it was a struggle to get clean water and I saw thousands of videos of people wasting the one thing I need *to live* to raise money to help a disease rather than help me live, well, I'd think the world is pretty shitty.
We're more globally connected than ever - are we all in this together or not?
posted by AzzaMcKazza at 3:07 PM on August 25, 2014 [1 favorite]
We're more globally connected than ever - are we all in this together or not?
posted by AzzaMcKazza at 3:07 PM on August 25, 2014 [1 favorite]
Maybe they should change it to the Gray Water Challenge?
posted by Atom Eyes at 3:26 PM on August 25, 2014
posted by Atom Eyes at 3:26 PM on August 25, 2014
AzzaMcKazza: If I was in a country where it was a struggle to get clean water and I saw thousands of videos of people wasting the one thing I need *to live* to raise money to help a disease rather than help me live, well, I'd think the world is pretty shitty.
Dude, the same can be said for when people in less developed countries see us filling up on meat, rather than rice or bread. Or vacationing in their country, which means we paid for a flight and we're taking time off work, while they work their asses off to keep us happy. Or how bout when the US sends over a potential cure for Ebola they were sitting on because the virus wasn't effecting white people? We do this all day long, but in this case, the money is actually going to a good cause.
posted by gman at 3:27 PM on August 25, 2014 [3 favorites]
Dude, the same can be said for when people in less developed countries see us filling up on meat, rather than rice or bread. Or vacationing in their country, which means we paid for a flight and we're taking time off work, while they work their asses off to keep us happy. Or how bout when the US sends over a potential cure for Ebola they were sitting on because the virus wasn't effecting white people? We do this all day long, but in this case, the money is actually going to a good cause.
posted by gman at 3:27 PM on August 25, 2014 [3 favorites]
It still irks me that it's wasting water. If I was in a country where it was a struggle to get clean water and I saw thousands of videos of people wasting the one thing I need *to live* to raise money to help a disease rather than help me live, well, I'd think the world is pretty shitty.
There's a lot I can write about why the wasted water argument is bullshit, complete with stats and references and the like, but I have shit to do so I'm gonna sum it all up in one line: the average suburban golf course uses more water in a DAY than a suburban family of four uses in four years. You ever protested at a golf course? Didn't think so.
posted by Itaxpica at 3:32 PM on August 25, 2014 [7 favorites]
There's a lot I can write about why the wasted water argument is bullshit, complete with stats and references and the like, but I have shit to do so I'm gonna sum it all up in one line: the average suburban golf course uses more water in a DAY than a suburban family of four uses in four years. You ever protested at a golf course? Didn't think so.
posted by Itaxpica at 3:32 PM on August 25, 2014 [7 favorites]
What's good diabetes related charity to donate to?
posted by clockworkjoe at 3:37 PM on August 25, 2014
posted by clockworkjoe at 3:37 PM on August 25, 2014
When I took the ice bucket challenge, I did it to raise money to find a cure for click bait.
posted by 4ster at 4:24 PM on August 25, 2014 [1 favorite]
posted by 4ster at 4:24 PM on August 25, 2014 [1 favorite]
I've found the biggest problem with the Ice Bucket Challenge to be the people who decide it's important for them to shatter us with their brilliance by telling us everything wrong with it.
There doesn't tend to be much overlap between this group and charitable giving, nor encouraging charitable giving in a very real way.
And this isn't even to say that this stuff shouldn't be all properly funded in the first place — even if it were, would it be a problem for disease research to be even better funded, regardless of the mechanism?
posted by DoctorFedora at 4:46 PM on August 25, 2014 [2 favorites]
There doesn't tend to be much overlap between this group and charitable giving, nor encouraging charitable giving in a very real way.
And this isn't even to say that this stuff shouldn't be all properly funded in the first place — even if it were, would it be a problem for disease research to be even better funded, regardless of the mechanism?
posted by DoctorFedora at 4:46 PM on August 25, 2014 [2 favorites]
I don't have the words to say what it's like to watch someone you love die from ALS (in my case, my mom). I watched her lose the ability to speak, to move her body, to eat, to breathe, and eventually even to move her eyes or blink or communicate in any way. (That is called being Completely Locked-In, and it's horrifying to see and absolutely terrifying to imagine experiencing.) The absolute horror of this disease makes it worth more funding and more attention, but the good and bad thing is that it's rare so it doesn't get as much of either as it should. The ice bucket challenge phenomenon has been amazing for those of us trying to raise awareness and money to fight this disease. It has been heartwarming to see, and also heartbreaking as it brings some pretty awful memories to the surface.
Haters gonna hate, and I hope you never have to go through what my mom went through before she died, or what I went through watching her lose control over every single thing bit by bit. But if you do, I bet you will feel differently and at least keep your mouths shut about a damn successful charitable campaign. If you don't like it, then don't participate.
posted by amro at 4:51 PM on August 25, 2014 [7 favorites]
Haters gonna hate, and I hope you never have to go through what my mom went through before she died, or what I went through watching her lose control over every single thing bit by bit. But if you do, I bet you will feel differently and at least keep your mouths shut about a damn successful charitable campaign. If you don't like it, then don't participate.
posted by amro at 4:51 PM on August 25, 2014 [7 favorites]
So somehow one is stuck-up or a hater when making fairly anodyne and largely objective statements about how $20 or $40 million are orders of magnitude smaller than what is typically needed for a breakthrough cure for an illness (not to mention the costs for developing treatments for myriad other diseases that harm millions) or for showing concern that folks are pumped up by a potentially momentary fad while being unaware of the troubling long-term outlook for funding for the NIH and other government funding streams? Actually, expressing thoughtful concern about the best ways to advocate for and sustain funding for projects that save and/or help improve as many lives as possible does not make one unsympathetic or oblivious to the pain of awful diseases for individuals or their family members or the loveliness of people's enthusiasm for this current challenge.
The thing is though, that in public health and scientific research (and, in a sane world, it would be true of the healthcare industry as well), there is a limited pot of money that we have to save lives and improve health among a lot of people. I think it is reasonable to acknowledge that this campaign doesn't add much to that pot and to thus use this as an occasion to express fear for the future of the federal agencies or institutes that fund research and worry that we'll be left with a quasi-public, largely private (pharma- or foundation-) funding system that does not make good choices about research objectives. It's really okay to worry about such things.
posted by faux ami at 5:46 PM on August 25, 2014 [8 favorites]
The thing is though, that in public health and scientific research (and, in a sane world, it would be true of the healthcare industry as well), there is a limited pot of money that we have to save lives and improve health among a lot of people. I think it is reasonable to acknowledge that this campaign doesn't add much to that pot and to thus use this as an occasion to express fear for the future of the federal agencies or institutes that fund research and worry that we'll be left with a quasi-public, largely private (pharma- or foundation-) funding system that does not make good choices about research objectives. It's really okay to worry about such things.
posted by faux ami at 5:46 PM on August 25, 2014 [8 favorites]
I don't know, amro. You seem to be taking personally something that has been presented, on purpose, as something fairly academic. Of course it sucks to watch a loved one die of ALS, as I did with a beloved family friend whose death then basically lead to another friend dying of a broken heart at 42, but that pain is not necessarily a good gauge for what makes the best choices for disease funding. I'm really sorry for the loss of your mom, and I'm sorry she died of ALS, but it might be precisely that which makes it hard to think through the opinions presented here rather than reacting personally to them.
posted by OmieWise at 5:50 PM on August 25, 2014 [3 favorites]
posted by OmieWise at 5:50 PM on August 25, 2014 [3 favorites]
You're right. I can't look at this objectively, and you can't understand why. So I'll just step out of this thread.
posted by amro at 6:07 PM on August 25, 2014 [1 favorite]
posted by amro at 6:07 PM on August 25, 2014 [1 favorite]
The opposite of "ice bucket challenge" is not "adequate public funding for disease research."
It. Is. NOTHING.
The haters are nihilists, and we're expected to take it on credit they have all of our best interests in their warm hearts. They're opposing disease awareness. They oppose donating to disease research because it's not in the Proper Order. Bullshit. They want and desire nothing that is not platonic perfect, and therefore they desire nothing itself, and anything that comes and creates must be fought and opposed. Screw that. That's not progressivism. That's slow-motion suicide, and they are ideological enemies to the left in America as severe as any free-marketer Republican.
Anything, anything at all, that sparks a sense of community and compassion, anything that sends viral the notion that all suffering is shared and generosity is the remedy, is on the side of the righteous. The haters can go back to disease ranking, I won't be joining them.
posted by Slap*Happy at 6:33 PM on August 25, 2014 [4 favorites]
It. Is. NOTHING.
The haters are nihilists, and we're expected to take it on credit they have all of our best interests in their warm hearts. They're opposing disease awareness. They oppose donating to disease research because it's not in the Proper Order. Bullshit. They want and desire nothing that is not platonic perfect, and therefore they desire nothing itself, and anything that comes and creates must be fought and opposed. Screw that. That's not progressivism. That's slow-motion suicide, and they are ideological enemies to the left in America as severe as any free-marketer Republican.
Anything, anything at all, that sparks a sense of community and compassion, anything that sends viral the notion that all suffering is shared and generosity is the remedy, is on the side of the righteous. The haters can go back to disease ranking, I won't be joining them.
posted by Slap*Happy at 6:33 PM on August 25, 2014 [4 favorites]
*raising a quiet hand*
Just for the record, I think the disease-ranking is kinda shitty, and my objection is solely to one angle of the campaign itself. I'd be discomfited by that one wrinkle of this campaign regardless of what it was funding - be it ALS or breast cancer or alzheimer's or "build one free orgasmatron for every woman alive".
Yay great ALSA is getting so much money now. Yay that maybe someone else will get more money later. Yay people who are able to donate and fight for the good. Some of us are just shy about whether or not we can join you, is all, and it'd be cool if we could make those decisions in private without someone nominating us for wacky stunts first is all.
posted by EmpressCallipygos at 6:43 PM on August 25, 2014
Just for the record, I think the disease-ranking is kinda shitty, and my objection is solely to one angle of the campaign itself. I'd be discomfited by that one wrinkle of this campaign regardless of what it was funding - be it ALS or breast cancer or alzheimer's or "build one free orgasmatron for every woman alive".
Yay great ALSA is getting so much money now. Yay that maybe someone else will get more money later. Yay people who are able to donate and fight for the good. Some of us are just shy about whether or not we can join you, is all, and it'd be cool if we could make those decisions in private without someone nominating us for wacky stunts first is all.
posted by EmpressCallipygos at 6:43 PM on August 25, 2014
I don't see how anyone can read that Avidly piece at the LA Review of Books, written by someone whose father died of ALS, and come away thinking it's the opinion of a "hater."
posted by mediareport at 6:55 PM on August 25, 2014 [3 favorites]
posted by mediareport at 6:55 PM on August 25, 2014 [3 favorites]
I've forced myself to see the net positive in all of this, and it does make sense and I get all the points about ALS awareness, overall benefit for charities, etc..
But a big part of me still can't get over the icky feeling that grows more and more with each ice bucket video on my FB wall. I'm still trying to process the icky-factor because it's multi-faceted.
And yes, part of it is the hypocritical nature of "HEY LOOK AT ME! NOT ONLY AM I CRAZY, BUT I'M SOCIALLY CONSCIOUS AND CHARITABLE. I'M AWESOME. LET'S SEE IF THE FRIENDS I CALL OUT ARE AS AWESOME AS ME!"
But I think there is always an element of that in charity, and while it's more pronounced when it takes the form of a video selfie, I think there is a more disturbing side- a more subtle trend of how social networks are shaping the way we communicate and the things we value. I remain hopeful because I think it's the same reason a lot of people have already done away with (or never bothered with) Facebook, but I think it is both dumbing people down, and encouraging less social behavior. It is a natural extension of the "like" button. And it's subtly built into the entire Facebook machine - by not providing a simple chronological timeline, but rather "curating" your wall with more popular or viral stuff, they are encouraging click-bait as the dominant form of communication.
Dumping a bucket of water on someone is one of the dumbest things you could possibly do. And sure it's fun, but the stark contrast of a serious medical problem, and a completely mindless sight-gag just reeks of laziness. I would hope such a worthy cause would inspire something more thoughtful. Perhaps a more "enlightened" viral campaign would go something like: "Make a 30 second video of yourself explaining ALS (or other charity) and why it's a worthy cause; then challenge a friend to do the same." I don't expect something that requires this much effort would ever go viral, but that's part of the problem.
The ice bucket challenge is co-opting the evil of the FB machine and using it for good, but it's still a depressing reminder of just how powerful the evil has become.
posted by p3t3 at 7:05 PM on August 25, 2014 [3 favorites]
But a big part of me still can't get over the icky feeling that grows more and more with each ice bucket video on my FB wall. I'm still trying to process the icky-factor because it's multi-faceted.
And yes, part of it is the hypocritical nature of "HEY LOOK AT ME! NOT ONLY AM I CRAZY, BUT I'M SOCIALLY CONSCIOUS AND CHARITABLE. I'M AWESOME. LET'S SEE IF THE FRIENDS I CALL OUT ARE AS AWESOME AS ME!"
But I think there is always an element of that in charity, and while it's more pronounced when it takes the form of a video selfie, I think there is a more disturbing side- a more subtle trend of how social networks are shaping the way we communicate and the things we value. I remain hopeful because I think it's the same reason a lot of people have already done away with (or never bothered with) Facebook, but I think it is both dumbing people down, and encouraging less social behavior. It is a natural extension of the "like" button. And it's subtly built into the entire Facebook machine - by not providing a simple chronological timeline, but rather "curating" your wall with more popular or viral stuff, they are encouraging click-bait as the dominant form of communication.
Dumping a bucket of water on someone is one of the dumbest things you could possibly do. And sure it's fun, but the stark contrast of a serious medical problem, and a completely mindless sight-gag just reeks of laziness. I would hope such a worthy cause would inspire something more thoughtful. Perhaps a more "enlightened" viral campaign would go something like: "Make a 30 second video of yourself explaining ALS (or other charity) and why it's a worthy cause; then challenge a friend to do the same." I don't expect something that requires this much effort would ever go viral, but that's part of the problem.
The ice bucket challenge is co-opting the evil of the FB machine and using it for good, but it's still a depressing reminder of just how powerful the evil has become.
posted by p3t3 at 7:05 PM on August 25, 2014 [3 favorites]
Dumping a bucket of water on someone is one of the dumbest things you could possibly do. And sure it's fun, but the stark contrast of a serious medical problem, and a completely mindless sight-gag just reeks of laziness.
Ice water. It's ice-water. It's about the most shocking thing you can do to your nervous system without causing actual harm to yourself. It's meant to make you aware of the bad things your nervous system can do to you if something goes wrong, to feel your body react and act outside your control. Even seasoned, cool hands at the publicity machine like Cumberbatch and Palin lose control of their bodies, and react without filters in the moment. It's alarming. It's meant to be. It's empathy happening.
It's a small act of courage, one people will razz you about in the short term, but not remember a week or month from now if you decline. They will remember the ice water, and how it felt. Maybe they'll be more interested and receptive when the St. Jude's envelope shows up in the mail, as well as donating to ALS causes. Initial signs indicate they will be.
posted by Slap*Happy at 8:26 PM on August 25, 2014
Ice water. It's ice-water. It's about the most shocking thing you can do to your nervous system without causing actual harm to yourself. It's meant to make you aware of the bad things your nervous system can do to you if something goes wrong, to feel your body react and act outside your control. Even seasoned, cool hands at the publicity machine like Cumberbatch and Palin lose control of their bodies, and react without filters in the moment. It's alarming. It's meant to be. It's empathy happening.
It's a small act of courage, one people will razz you about in the short term, but not remember a week or month from now if you decline. They will remember the ice water, and how it felt. Maybe they'll be more interested and receptive when the St. Jude's envelope shows up in the mail, as well as donating to ALS causes. Initial signs indicate they will be.
posted by Slap*Happy at 8:26 PM on August 25, 2014
Thanks - it's an interesting point. I don't think I would have made the connection on my own between the physical shock and empathy (perhaps because of my own dumb masochism - I've jumped in the icy waters of Lake Superior without a second thought). But yeah, over time the memory of the stunt may lead to some deeper reflection and introspection.
Again, I think the overall net change is positive, and this thread has opened my eyes to some of the finer positive points, but it's taking a lot of effort to overcome my natural pessimism toward the medium of FB and the type of communication that it encourages.
posted by p3t3 at 9:28 PM on August 25, 2014
Again, I think the overall net change is positive, and this thread has opened my eyes to some of the finer positive points, but it's taking a lot of effort to overcome my natural pessimism toward the medium of FB and the type of communication that it encourages.
posted by p3t3 at 9:28 PM on August 25, 2014
I am interested that no-one in this thread has mentioned the oft reviled Give Well yet, who seem relevant to this conversation.
I had a friend at university who refused to donate to charity because he felt that it was doing the work that government should be doing, which I think is letting the perfect be the enemy of the good, but I think he had a certain point.
As mentioned up thread, money for illness is correlated not with the lethality of the illness, or the need for funding even, but with the effectiveness of the fund raisers.
In a magical world full of perfect rationalists, we would all decide how much we wanted to give to charity, and put that into a charity bucket, which would then be distributed to causes according to their need for funding and their urgency. These causes would be managed by more centralised agencies to take advantage of economies of scale. In practice, of course, we are not like that. We shouldn't actually need our friends to go for a run to donate to a charity, but it is demonstrably the case that we do so. People donate to charity when they are reminded to do so, so while we might find these kind of things frustrating from a magical rationalist point of view, we have to accept how people are.
The ice bucket challenge is fantastic in its memetic success, and no doubt other charities will attempt to emulate it with mixed success. I agree that there is a problem that the best way for a charity to get money is not to have the most worthy cause, but to have the most interesting gimmick, but unfortunately that is the way humans are wired, and to deny that is to deny reality.
posted by Cannon Fodder at 12:48 AM on August 26, 2014
I had a friend at university who refused to donate to charity because he felt that it was doing the work that government should be doing, which I think is letting the perfect be the enemy of the good, but I think he had a certain point.
As mentioned up thread, money for illness is correlated not with the lethality of the illness, or the need for funding even, but with the effectiveness of the fund raisers.
In a magical world full of perfect rationalists, we would all decide how much we wanted to give to charity, and put that into a charity bucket, which would then be distributed to causes according to their need for funding and their urgency. These causes would be managed by more centralised agencies to take advantage of economies of scale. In practice, of course, we are not like that. We shouldn't actually need our friends to go for a run to donate to a charity, but it is demonstrably the case that we do so. People donate to charity when they are reminded to do so, so while we might find these kind of things frustrating from a magical rationalist point of view, we have to accept how people are.
The ice bucket challenge is fantastic in its memetic success, and no doubt other charities will attempt to emulate it with mixed success. I agree that there is a problem that the best way for a charity to get money is not to have the most worthy cause, but to have the most interesting gimmick, but unfortunately that is the way humans are wired, and to deny that is to deny reality.
posted by Cannon Fodder at 12:48 AM on August 26, 2014
In a perfect world we wouldn't need charity.
In a logical world each cause would get the funding levels required by the number of people it would help.
In a morally pure world all charitable donations would be anonymous and done solely out of empathy and love for others, completely selfless acts.
When any of that becomes true, then the sanctimony about things like the ALS Ice Bucket Challenge will have some validity. Until then, it just comes across as arrogant scolding of people for doing something good but not perfect, in a good but not perfect way.
'Perfect is the enemy of good' should not be your life motto.
posted by gadge emeritus at 2:46 AM on August 26, 2014 [1 favorite]
In a logical world each cause would get the funding levels required by the number of people it would help.
In a morally pure world all charitable donations would be anonymous and done solely out of empathy and love for others, completely selfless acts.
When any of that becomes true, then the sanctimony about things like the ALS Ice Bucket Challenge will have some validity. Until then, it just comes across as arrogant scolding of people for doing something good but not perfect, in a good but not perfect way.
'Perfect is the enemy of good' should not be your life motto.
posted by gadge emeritus at 2:46 AM on August 26, 2014 [1 favorite]
The haters are nihilists, and we're expected to take it on credit they have all of our best interests in their warm hearts. They're opposing disease awareness.
You're joking, right? This is like a parody of sanctimonious righteousness.
posted by OmieWise at 4:37 AM on August 26, 2014 [1 favorite]
You're joking, right? This is like a parody of sanctimonious righteousness.
posted by OmieWise at 4:37 AM on August 26, 2014 [1 favorite]
Well, this was an interesting take - Matt Damon recently did the ice bucket challenge, but he also made a point of using water he'd scooped out of his toilets to make it a double-duty challenge and call attention to people in communities without access to clean water at the same time.
posted by EmpressCallipygos at 7:49 AM on August 26, 2014 [2 favorites]
posted by EmpressCallipygos at 7:49 AM on August 26, 2014 [2 favorites]
You're joking, right? This is like a parody of sanctimonious righteousness.
Hold on now, I think he has a point. Because what's more nihilistic than pointing out racial and economic disparities in health care?
posted by anotherpanacea at 9:59 AM on August 26, 2014
Hold on now, I think he has a point. Because what's more nihilistic than pointing out racial and economic disparities in health care?
posted by anotherpanacea at 9:59 AM on August 26, 2014
It's meant to make you aware of the bad things your nervous system can do to you if something goes wrong, to feel your body react and act outside your control.
Can you back that up with a citation? Because I assumed that was the reasoning, but I've been unable to find anything saying that was part of the origin of the challenge. Everything I've read has said it was basically a stupid dare among athletes.
posted by jaguar at 11:45 AM on August 26, 2014 [1 favorite]
Can you back that up with a citation? Because I assumed that was the reasoning, but I've been unable to find anything saying that was part of the origin of the challenge. Everything I've read has said it was basically a stupid dare among athletes.
posted by jaguar at 11:45 AM on August 26, 2014 [1 favorite]
Agreed, jaguar; it strikes me that the "the shock of the water will recreate neural damage for a fleeting second" sounds like after-the-fact interpretive reading-an-explanation-into-this to me.
posted by EmpressCallipygos at 1:17 PM on August 26, 2014 [1 favorite]
posted by EmpressCallipygos at 1:17 PM on August 26, 2014 [1 favorite]
It's not good enough for a one-off successful campaign.
It's just completely deluded to criticize this as an insufficiency robust strategy for funding medical research rather than what it actually is, a slightly less-pointless than usual amusing Facebook meme.
You're comparing this with long-term charitable fundraising strategies when it should be compared with cute cat videos.
posted by straight at 7:39 AM on August 27, 2014
It's just completely deluded to criticize this as an insufficiency robust strategy for funding medical research rather than what it actually is, a slightly less-pointless than usual amusing Facebook meme.
You're comparing this with long-term charitable fundraising strategies when it should be compared with cute cat videos.
posted by straight at 7:39 AM on August 27, 2014
Mike Rowe on the Ice Bucket Challenge: Not Throwing Cold Water on a Cause
posted by flex at 9:34 AM on September 1, 2014 [1 favorite]
posted by flex at 9:34 AM on September 1, 2014 [1 favorite]
via Mike Rowe, According to the experts, 50% to 70% of all the money collected as a result of the Ice Bucket Challenge will directly impact future contributions to other charities in an equal and opposite way. In other words, if The ALS Association collects a $100 million – as it’s on track to do – other charities competing for the same dollars will collect between $50 and $70 million LESS.
In other words, the Ice Bucket Challenge increased this year's total charitable giving by $50 to $30 million.
posted by phearlez at 6:44 PM on September 1, 2014
In other words, the Ice Bucket Challenge increased this year's total charitable giving by $50 to $30 million.
posted by phearlez at 6:44 PM on September 1, 2014
.... to an agency that wasn't counting on it and doesn't have plans for it, and decreased funding to organizations that were and did.
posted by jaguar at 6:47 PM on September 1, 2014
posted by jaguar at 6:47 PM on September 1, 2014
"Fuck you, perfect." -- the Good.
posted by phearlez at 7:14 PM on September 1, 2014 [1 favorite]
posted by phearlez at 7:14 PM on September 1, 2014 [1 favorite]
It's not uncommon for something-or-other to interrupt a donation stream from time to time. I work for a non-profit. One year there was a huge aggressive campaign to build a new section on the hospital. Major impact on donations to other organizations. So this year it's ice buckets. Good for ALS! Seriously! The rest of us will carry on as we always do and hope for something so wonderful and unexpected to happen to us!
posted by ThatCanadianGirl at 7:41 PM on September 1, 2014
posted by ThatCanadianGirl at 7:41 PM on September 1, 2014
It's just completely deluded to criticize this as an insufficiency robust strategy for funding medical research rather than what it actually is, a slightly less-pointless than usual amusing Facebook meme.
Did you read some of the comments upthread? I don't think the nasty, arguably pointless, over-the-top comments were from those to whom you're referring. To my mind, the frustration from the naysayers (or at least from me, a mild naysayer) is that we have a for-profit healthcare system that by its very nature is not set up to (a) care for those with ALS because long-term care in this country is typically insufficient and terribly hard to come by without destituting oneself (unless one is lucky enough to be one of 3,000 covered in the Cuban-style, i.e., totally government-run VA healthcare system who can go to VA's centers of excellence and get generous coverage for equipment and home health) or (b) cure diseases for which the coverable population is too small to make drug R&D profitable.
The incidence of ALS .002% and the prevalence is just three to four times higher. Look at the incidence/prevalence of cardiovascular disease (CVD)! It's orders of magnitude higher--so much money to be made! ALS only got covered at VA (if I remember correctly) because of concern that it may be linked to exposures experienced by soldiers during the Gulf War and because vets don't have to do their own fundraising--Congress does it for them! And everyone should be treated that way!
Conversely, our for-profit system is unlikely to address ALS when it can make massive profits with me-too drugs for CVD while health insurers (and Medicare as well) are unlikely to cover the full costs of ALS, such as costly round-the-clock home health care because Congress (or Medicare contractors) is unlikely to approve expensive changes enabling more comprehensive long-term care coverage.
Will these contributions potentially help ALSA provide resources to professionals, caregivers, and individuals with ALS plus small grants to researchers? Yes. Is ALSA still a tremendous resource repository for loved ones of those struggling with a newly diagnosed illness and completely at a loss when dealing with the byzantine health insurance system and an evil disease? Yes! And is the viral campaign amazing and something that those in public health should not be annoyed with, but try themselves? Absolutely! (And they already have done so for years.)
But it's still true that most of us outside of the VA spend time in a massive for-profit system that, outrageously, is unable (and is simply not designed) to help these people--either with treatment or search for a cure--in the way that that they deserve. And it makes me sad, despite the loveliness of the caring and kind videos by many and the obvious largesse that will make some difference to individuals and caregivers who really need our support (and boy do they need lots of it, including desperately needed respite care that some of these ice bucket folks could do a great job providing to overburdened ALS family caregivers), that the system is still making fools of us and we're sort of cheering at our own efforts versus a Goliath that won't, that can't, do anything truly meaningful in response.
The system is aware of this and will just keep asking more of us, with the more we give (which we have to)--more unpaid caregiving, more foregone wages and lost retirement income for ALS and other caregivers, more out-of-pocket costs, less treatment coverage under President Ryan's or Rand Paul's proposed Medicare benefit and Medicaid state block grants, less NIH funding, and more private charitable donations. Good for us for doing all the yeoman's work and charity, but all in all it's a frickin' shame. It's beautiful but sad that we have to do all this work on our own. (Don't shoot me.)
posted by faux ami at 8:47 PM on September 1, 2014 [2 favorites]
Did you read some of the comments upthread? I don't think the nasty, arguably pointless, over-the-top comments were from those to whom you're referring. To my mind, the frustration from the naysayers (or at least from me, a mild naysayer) is that we have a for-profit healthcare system that by its very nature is not set up to (a) care for those with ALS because long-term care in this country is typically insufficient and terribly hard to come by without destituting oneself (unless one is lucky enough to be one of 3,000 covered in the Cuban-style, i.e., totally government-run VA healthcare system who can go to VA's centers of excellence and get generous coverage for equipment and home health) or (b) cure diseases for which the coverable population is too small to make drug R&D profitable.
The incidence of ALS .002% and the prevalence is just three to four times higher. Look at the incidence/prevalence of cardiovascular disease (CVD)! It's orders of magnitude higher--so much money to be made! ALS only got covered at VA (if I remember correctly) because of concern that it may be linked to exposures experienced by soldiers during the Gulf War and because vets don't have to do their own fundraising--Congress does it for them! And everyone should be treated that way!
Conversely, our for-profit system is unlikely to address ALS when it can make massive profits with me-too drugs for CVD while health insurers (and Medicare as well) are unlikely to cover the full costs of ALS, such as costly round-the-clock home health care because Congress (or Medicare contractors) is unlikely to approve expensive changes enabling more comprehensive long-term care coverage.
Will these contributions potentially help ALSA provide resources to professionals, caregivers, and individuals with ALS plus small grants to researchers? Yes. Is ALSA still a tremendous resource repository for loved ones of those struggling with a newly diagnosed illness and completely at a loss when dealing with the byzantine health insurance system and an evil disease? Yes! And is the viral campaign amazing and something that those in public health should not be annoyed with, but try themselves? Absolutely! (And they already have done so for years.)
But it's still true that most of us outside of the VA spend time in a massive for-profit system that, outrageously, is unable (and is simply not designed) to help these people--either with treatment or search for a cure--in the way that that they deserve. And it makes me sad, despite the loveliness of the caring and kind videos by many and the obvious largesse that will make some difference to individuals and caregivers who really need our support (and boy do they need lots of it, including desperately needed respite care that some of these ice bucket folks could do a great job providing to overburdened ALS family caregivers), that the system is still making fools of us and we're sort of cheering at our own efforts versus a Goliath that won't, that can't, do anything truly meaningful in response.
The system is aware of this and will just keep asking more of us, with the more we give (which we have to)--more unpaid caregiving, more foregone wages and lost retirement income for ALS and other caregivers, more out-of-pocket costs, less treatment coverage under President Ryan's or Rand Paul's proposed Medicare benefit and Medicaid state block grants, less NIH funding, and more private charitable donations. Good for us for doing all the yeoman's work and charity, but all in all it's a frickin' shame. It's beautiful but sad that we have to do all this work on our own. (Don't shoot me.)
posted by faux ami at 8:47 PM on September 1, 2014 [2 favorites]
"I found the winner of the ice bucket challenge."
posted by jeffburdges at 1:05 PM on September 6, 2014
posted by jeffburdges at 1:05 PM on September 6, 2014
« Older "I used to be with 'it,' then they changed what... | "MY INVISIBLE GIRLFRIEND… WILL I LOVE HER?" Newer »
This thread has been archived and is closed to new comments
posted by I-baLL at 9:02 AM on August 25, 2014 [6 favorites]