Maclean’s readers weigh in on the ice bucket challenge

Earlier this week, Scott Gilmore urged people to think before they donate. The opinion piece inspired much debate and feedback

ICEBUCKETPOST

Follow this link to read the original story.

Readers there debated the issue in the comments section

We’ve also received plenty of mail:

ALS is, as Gilmour states, a rare and, therefore, not commonly known disease. For this reason, the ALS challenge could not be a better reason for funding. This challenge has caused viral awareness of a disease most people would have never known about unless they were directly affected, or knew someone who was affected. Along with the awareness, the vast amount of donations the challenge has brought to the ALS foundation goes toward research and devices to help victims cope with the disease—a disease that, with funding such as this, will become extinct sooner rather than later. This, if I’m not mistaken, is NOT a misuse of donated money.

Having seen ALS affect someone so close to me, I know how awful this disease is, and how much this funding helps, and am thankful to everyone who has participated or donated, as they’re doing something for a wonderful cause. I respectfully ask that Gilmour keep his offensive opinions to himself, as they benefit absolutely nobody.

—Jenny Arnold

I’m sitting here trying to find the most respectful way to tell you that your article written about ALS is the most disgusting article I have read to date, which is impossible. Let’s just go through the despicable comments one by one.

“You ignore the diseases that genuinely threaten . . .” How does ALS not ”genuinely threaten” lives? These people who are slowly losing their motor skills and dying within three to five years are not “genuinely threatened?” Do you have children or a wife? What if, one day, all you could do was watch them? You need your wife and kids to push you around, because you can’t do it yourself. You can’t bathe yourself, you can’t feed yourself, you can’t hug, cuddle, kiss, nothing.

Next: The three questions. Where did you get these questions from? Did you physically go out and ask a large number of people to reach the conclusion that those three questions are what we need to consider? And who are you to say that the ALS challenge fails all three? Proof is in the numbers. Millions of dollars have been raised. Who are you to say the kind of influence it will have, and its urgency? Do you think that, to loved ones of those currently battling ALS, this isn’t urgent?

Next, on to my all-time favourite part. “Only about 600 people die from it every year in Canada.” This makes me nauseous. Only? That’s 600 people too many. I’m going to go out on a limb and guess that you did not know any of those 600 people. But guess what? I did. You think it’s respectful to lump her with 599 and say “thankfully” it was only that many? Thankfully? Just because it’s “rare” doesn’t mean it doesn’t matter. If you watched someone who biked from Kitchener, Ont., to Ottawa, the strongest man you know, slowly deteriorate to the point where he couldn’t even tell his children he loved them, you would not hold the ignorant stance that you do.

—Jenna Biernaskie

Others responded to Gilmore with a challenge of their own. Here’s Graham Milner, development coordinator with Canada Without Poverty:

Earlier this weekend, former diplomat and founder of Building Markets wrote that the ice bucket challenge is bad for you, because it does not satisfy the greatest need for funds, and it is “narcissistically self-promoting.”

Is the ice bucket challenge bad for you? No.

Is the ice bucket challenge good for you? No!

Is it narcissistically self-promoting? Yes.

Well, it’s hard to argue with Mr. Gilmore’s logic.

He (rightly) argues that there are more urgent needs for money in this world (heart disease, Ebola, or the refugee crisis in Syria).

But where his argument fails is that it’s possible to argue there will always a charity with a “greater need,” or one where you can have a greater influence. But, as a society, we MUST stop being critical of viral initiatives that work in exactly the way they were meant to, based entirely on their success.

Mr. Gilmore cites Livestrong, Kony 2012 and Movember, all of which were/are very successful at starting conversations, all this while giving a free pass to other charities that are less obvious but far more offensive and/or detrimental.

I invite Mr. Gilmore and (and others) to express equal outrage over charities that use misleading imagery, those that use the guise of charity for private-sector profits, those that increasingly depend on third-party fundraisers who, too often, take large “finder’s fees,” or those charities whose name-recognition put them above critiques of overhead/fundraising expenditures. These charities raise hundreds of millions of dollars every year, but do so quietly and avoid scrutiny, because they aren’t appearing on our Facebook feeds or creating hilarious Buzzfeed articles. Instead, Mr. Gilmore and others have criticized “ice-bucketers” (trademark pending) and their success in raising awareness for ALS purely because they went viral.

As a charitable fundraiser myself who has worked for many very worthwhile causes (humanitarian crisis, the global water and sanitation crisis and, currently, poverty elimination in Canada), I applaud the ALS Society’s ability to create a viral campaign. As silly as pouring (or, in some unfortunate cases, dropping) buckets of cold water over our heads, it has created a conversation, and raised buckets and buckets of money.

Creating a viral campaign, isn’t as simple as saying you are going to create a viral campaign. As Mr. Gilmore says, it has to be narcissistically self-promoting, (and compete with much more narcissistically self-promoting campaigns, such as, say, buying a bottle of pop with your name on it). To argue that most people who give to charity are doing so because the cause has the greatest need is, frankly, naive. Fundraising is no more than mass marketing with a more altruistic end.

I can imagine that most who donate to ALS this year will not do it next year. But some will, and that will create a bucket of legacy. And if, some day, somehow, they find a cure to this disease, then I am happy to pour a bucket of ice over my head, and whip out my VISA card.

So right here, I challenge Mr. Gilmore to dump a bucket of ice water over his head. If he accepts (or he doesn’t), I will make a contribution to his organization, because I know it will have a great impact.

Then, maybe, we can go back to talking about how, over 17 seasons, Lou Gehrig had 2,000 RBI, and a .340 batting average, because, with numbers like that, he deserves it.

Milner is development coordinator with Canada Without Poverty, a national anti-poverty charity dedicated to the elimination of poverty in Canada since 1971.

Scott Gilmore responds:

The majority of responses to my opinion piece were supportive and positive, but there were also many critics. The primary criticism is that ALS is a terrible affliction and, therefore, deserves to be funded. Anyone with even the most superficial knowledge of the disease would agree it is horrible. I didn’t suggest otherwise—would never suggest otherwise—and, if this is your criterion for picking a cause to support, that is certainly your choice. What I was arguing is that each of us should pause and ask ourselves: “How do I want to help, and is this charity the best way to do so?” Donating to a charity simply because there is a viral video is not a sufficient justification. In fact, “Because there is a viral video . . .” is not a good enough reason to do anything. At all. Ever.

The most powerful critique (in my opinion) was against my suggestion that the pool of charitable donations is finite, that $1 going to ALS means $1 less to other charities. There is some research to suggestion that this is the case, that viral campaigns cannibalize other causes, but the data (that I have seen) are inconclusive. There is also the interesting question of “moral licensing” (here, here and here), which argues that social charitable campaigns actually lead individuals to be less generous in the future. I think it is reasonable to argue (against me) that the $90 million that is going toward ALS research would not have been donated to anyone. This is possible.

Some suggested that because ALS has no cure (whereas malaria has a pending vaccine), it is more deserving. Cures, however, are only one part of this equation. Distribution, treatment, prevention and eradication can still take generations. I remain strictly utilitarian on this. In the last decade, millions more people died from malaria than from ALS. Therefore, until this is no longer true, I will be supporting the cause where my money has the greater chance of helping a greater number of people.

Several people have argued that if I or someone I loved was dying of ALS, then I would support the ice bucket challenge. They are right. I would not only donate toward its cure, I would encourage others to do the same, whether it was ALS or any other disease. But it would not change my central point, which is that people need to think about why they are donating, and not just do it because it’s popular this week.

It was also pointed out that I used a mixture of Canadian and U.S. statistics and that the data for donations were limited to the largest “marquee” campaigns. I didn’t like that, either, and would prefer more comprehensive and comparable data. Unfortunately, I was unable to find it. If others can, for example, provide the total amount of all donations made in Canada to treatment and research for major diseases, I will happily post it.

Some argued that I have no right to tell people where to donate their money. They are right. I don’t, and never suggested that I did. I believe in their freedom of choice, and my freedom to encourage them to make those choices based on some thought and not some fad. This is an important point to repeat. You can support any cause you want. It may be animals, or the environment, or peace, or culture, or medical research. But know why you are donating and don’t do it simply to get a few more likes on your Facebook page.

Finally, I was also criticized for simply being an “idiot,” “ass-hat,” “bastard,” “fuddy duddy” and “waste of space.” They may be right. My brother has called me all those names and, perhaps not coincidentally, he has also filmed a very funny ice bucket challenge.

In closing, be generous. Donate to the cause that matters most to you. Know why you are donating. Then do it again.

Related posts:

You should not have to win a lottery to die with dignity 

Understanding ALS

Dave Lambert’s brush with death 

 




Browse

Maclean’s readers weigh in on the ice bucket challenge

  1. There are just not enough characters on Twitter to be able to give a proper response to Scott Gilmore’s “article”. I suppose personal rant is more along the correct line.
    Reading it I was stunned at thoughtless and insensitive nature of his words. That we need to go by a particular “list”, that we should follow his example and specifically look at statistics to help us decide which particular organization best deserves or will make best use of our donations. This Ice bucket Challenge has brought about a keen social awareness on a global level, by means of social media. Perhaps some can be accused of…what was the term again…ah yes…being “narcissistically self-promoting”. It has brought more awareness about this lesser known but debilitating disease and isn’t that almost as important as the funds it raises? I don’t need to be made aware of cancer, My mother died of it. I don’t need to be made aware of Heart Disease, my father died of it. I certainly don’t need to know the dollars and cents of a person’s value. Huge headway has been made in the area of research for both cancer and heart disease, yet those suffering from ALS have no such luxury. Those with what, were once completely fatal illness, now have hope. Those with ALS, and their family members don’t have that hope.
    Much criticism has been made as to why it’s the ice bucket challenge. It’s simple really. Those reactions our nervous system have when that bucket if ice cold water dumped on us, muscles tensing, spine tingling almost painfully, that inability to breath momentarily, is what someone is suffering from ALS has to live with on a continual basis. We get a momentary shock and a quick reprieve. They do not.
    Suffice it to say that ALS will need to put very little into advertising this year, unlike many other organizations. While the Challenge may not have been the brain-child of the organization, it’s definitely marketing genius. Question however, is that if other foundations were to have done a similar social media “event” such as this, perhaps Cancer Society, would Scott be making similar criticisms. Probably not, as it has been deemed suitable to donate to by his standards.
    I find it slightly humorous that Scott Gilmore seems to think he has the authority to instruct us simpletons, us mere mortals as to where we should give. His opinion means very little to me. I simply find his attitude, his self righteousness, repugnant.

    • Dear Matthew. The article was thought provoking and enlightening while your rebuttal was simply an attack on the author which I find repugnant. Nowhere in the article did he indicate which charities to pick.

      • Hi Bajabob – the comment you’re replying to is from EMAC66, not me. I to find his reply repugnant, and wouldn’t want you thinking it came from me.

  2. My issue with Gilmore’s article is that it tries to persuade to give our money using our logic while offering a model (the death rate to funding dollars ratio) which is logically flawed.

    The ratio of number of deaths to funding dollars as sole indicator of need is flawed because it fails to take into account other variables such as the size of the existing body of knowledge about a given disease. Given that research is about finding out stuff we don’t know, it makes sense that cash is streamed towards research into the diseases we know least about. Gilmore states:

    “last year ALS killed 6,849 people in the U.S., and attracted $23 million for research (a ratio of $3,382 per death). Heart disease, by contrast, killed 596,577 but only raised $54 million (a paltry sum of $90 per death). If you want your donation to make the biggest difference, fund the diseases that need the most money.”

    What this doesn’t take into account is the fact that we already know a lot about heart disease. Crucially, we also know a lot about how heart disease can be treated and certainly how we can help prevent it. ALS on the other hand, largely remains a mystery. We don’t know what causes it and there is no known cure. Which cause really “needs” the most research money then?

  3. What about poor people who get “called out” to do the ice bucket challenge? What if their kids are starving, but instead they of buying them macaroni and cheese or whatever, they are forced to give money to the ALS association? And in developing nations, many people don’t even have ice, so they’ll be forced to donate $100, the income of an ENTIRE YEAR. When will this end? http://dandygoat.com/poorest-nations-gripped-by-fear-of-ice-bucket-challenge

    • I can’t take your argument seriously.

      No one with a sound mind and an intact survival instinct would spend their last $5, $10, whatever, on the ALS Ice Bucket Challenge rather than feed themselves and their kids.

      Ridiculous suggestion.

      • Ridiculous or not what Samuel Stone said, the fact is that some people have a weird/agressive attitude about this challenge and it’s too much.
        They said that if you do not accept the challenge you are not whorty.
        Could anyone judge how, when, where I give to charity funds ?!
        If you put a bucket on your head, that doesn’ t mean that you actually give a dime for the cause.
        I tell you, the majority only want to have some hilarious Youtube videos.
        Better be humble and discreet and donate some, than only be ridiculous.

        • “Ridiculous or not what Samuel Stone said, the fact is that some people have a weird/agressive attitude about this challenge and it’s too much.”

          There are lots of people that have a weird/aggressive attitude to all sorts of things. Ignore them.

          “They said that if you do not accept the challenge you are not whorty.”

          If someone says you’re not worthy then that says more about them as an individual than the cause. It is a mistake to conflate the two. Ignore them.

          “Could anyone judge how, when, where I give to charity funds ?!”

          No – they can’t – it’s your business. Scott Gilmore’s articles does just this though.

          “If you put a bucket on your head, that doesn’ t mean that you actually give a dime for the cause.”

          True.

          “I tell you, the majority only want to have some hilarious Youtube videos”

          Presumptuous conjecture – may be true though.

          “Better be humble and discreet and donate some, than only be ridiculous.”

          You have a right to that opinion.

          • Let the common sense prevail.
            Agreed with you, sir.

  4. It’s a shame that people and their problems are seen only as a statistical percentage.
    That is the real world and leaders are guided by statistics.
    In the real world leaders lead by numbers and not by heart.
    Actually I think world leaders should do a cold shower to see real problems we face.
    So, unfortunately, most people see their own interests.
    In fact many people are too rich to see the troubles of the poor and sick.
    But there are many unresolved issues, especially in underdeveloped countries ….
    If I had to make an agenda of priorities that would be impossible.
    On the other hand, wealthy countries have a clear advantage over those less fortuitous, because the standard of living.
    Here we have the necessary conditions for research and development in medical treatment.
    And it’s easy to make charitable donations.
    It’s a matter of conscience.
    But nobody mentions ebola disease for example?
    It’s still an incurable disease and is more frightening and deadly than ALS …
    Do you have to pour water on the head to try to help those with no luck, right?
    What’s next, parachute jump from a building?

  5. The ALS Association has basically accomplished nothing in 30 years, and only 12,000 become afflicted with the disease every year.

    Each year 12.7 million people discover they have cancer and 7.6 million people die from the disease.

    Also, only 37% of the money goes to research.

    Bottom line? Your money is best spent elsewhere.

  6. While the article presents an argument why the author does not choose to donate to the ALS Association or chooses to not participate in the ice bucket challenge, he does a poor job at articulating why it is harmful for those who choose to do so. Even if the total amount donated via the Ice Bucket Challenge DID take dollar for dollar from other charities, it is still under 0.05% of total charitable giving, so chances are the impact on any given organization is not significant. The Ice Bucket Challenge was not created or designed by the ALS Association, rather it is was a grassroots effort that went viral.

    My primary issue is the cold and rather pompous way the author thinks we should decide where to channel our donations. While each person has the right to donate and to choose where and how to do so, I think people should donate to causes they are passionate about. Concentrate on the improvements you most want to see in the world, no matter how large or small, and donate your resources to those improvements. The one place to put your head before your heart and spirit is to research your prospective charities for efficiency and that their works and mission match your passion. If a viral video inspires your passion, even for a brief time, check out the charity for efficiency (ALS Association gets a top 4-star rating from Charity Navigator) and go for it.

  7. If they say the cold water recreates the suffering of ALS I say it was a brilliant idea. Any one person getting the credit yet? They will surely become a fundraising superstar/legend.

    My opinion … the whole thing has now jumped the shark (deaths trying it).
    … the last 50 mill. was raised by “first worlders” more committed to selfies than anything
    … waiting to see the sequel or copycat, what will it be?

Sign in to comment.