When I said that I was jealous of Cancer, it never occurred to me that someone out there might be jealous of ALS. But apparently, that’s what’s happened.

I suppose I shouldn’t be surprised. There are so many horrible illnesses out there, none of which are receiving the attention that ALS has enjoyed over the last few months. There are many obscure diseases without cures, and many well-known diseases that still claim too many lives each year. So it’s understandable, I guess, that people with strong feelings about other illnesses would be annoyed with the glut of icy videos cluttering their newsfeeds. Maybe I should have been more sensitive to that in my last post.

I came across one comment, however, that I just can’t overlook. The level-headed peace-lover in me advises me not to engage in a debate about a post that is so clearly riddled with inaccuracies and spurious reasoning. But posts such as these continue to receive nods of approval from readers I otherwise admire, and I have strong (and admittedly personal) feelings on the matter; and so I can’t help but address the points raised by this passionate commenter.

Facebook comments

Comments following August 26 meme post on Facebook

First, a few notes on numbers. We must be careful with our statistics. It is misleading to compare Canadian mortality figures with US fundraising figures. Here are a few exclusively Canadian statistics gleaned from The Heart and Stroke Foundation, The ALS Society of Canada, Statistics Canada, and Charity Intelligence Canada:

  • In Canada, ALS claimed 672 victims in 2008 (2 in 100 000), and Heart Disease claimed 69 703 (1 in 3).
  • In Canada, The ALS Society raised $1.1 million in 2013, of which $319 000 went to research efforts. That amounts to a per capita figure of $474 per victim. The Heart and Stroke Foundation raised $116 million, of which $38 million went to research, resulting in a per capita figure of $545 per victim. These figures are far removed from the $3500/person (ALS) and $90/person (Heart Disease) cited in our commenter’s post.
  • 80% of deaths due to Heart Disease in Canada are preventable. ALS is never preventable. Ever.
  • Death rates due to Heart Disease have decreased by 75% since 1952, but death rates due to ALS have seen a statistically significant increase since the late 1960s.

Therefore, a preventable and treatable disease with a rapidly decreasing mortality rate has historically received more funding per victim than an increasingly common disease with no known cause or cure. If we want to “keep people thinking relatively,” we must, at the very least, make sure our statistics are clear and accurate.

A more worrisome concern to me, however, is commenter’s denunciation of “viral streams of patring (sic) each other on the back for caeing (sic) about the poor little guy that can hardly move.” Does the “poor little guy that can hardly move” somehow deserve less of our concern than the 80% of Heart Disease sufferers that could have prevented their deaths by deliberately pursuing a healthy and active lifestyle? Is our “poor little guy” of less value to society, simply because this incurable disease has immobilized him?

I understand that the self-congratulatory tone of the Ice Bucket phenomenon can be a turn-off. I acknowledge that not everyone wants their newsfeeds cluttered with stunts related to a cause that has never affected them. I acknowledge that other causes are equally worthy of our support. I acknowledge that we ought to give careful thought and consideration to where our charity dollars can be of the most use.

But I also want to point out that the Ice Bucket Challenge did not originate with a powerhouse marketing team in a comfortable boardroom, plotting to manipulate the rich and gullible into donating millions of dollars to an organization of dubious value. The challenge was started and popularized by regular people, who could just as easily have chosen to promote a different cause; in fact, originally the challenge was to donate to a charity of one’s choice. It turned into an ALS challenge because some prominent participants had a personal connection to ALS sufferers. There is nothing selfish about wanting to ease, or prevent, the suffering of people you love. Further, the trend has since inspired many spin-off campaigns for other causes, including the admirable Rice Bucket Challenge in India.

As for the matter of awareness, I acknowledge that awareness is needed everywhere. I am thankful for the thoughtful, and even conflicting posts in my newsfeed about events in Gaza and Iraq. It was these that alerted me to atrocities about which I was previously uninformed and unconcerned (and frankly, I’d rather see socially conscious content of any sort than endless streams of photos of other people’s cats and dogs). I don’t fault anyone for posting about Gaza and not the Ukraine, or about Alzheimer’s and not Parkinson’s. We post about the things we care about. That’s exactly what we should do as a civilized and compassionate society. We do so in an effort to make more people more compassionate about more issues; and while some participants may care more about the quality of their own videos than the dismal quality of life of the ALS sufferers their videos support, the same is true of any charity. Donors’ names and logos are listed on plaques and programs everywhere you look, with no mention of their motivation for giving. It is unfortunate that our “civilized and compassionate society” still feels the need to reward, and be rewarded by, the philanthropists who spur us into action. But I would rather live in a giving society with mixed motives than a complacent society that silences the voices of the passionate.

In the end, this meme makes an admirable, but hypocritical statement. In drawing attention to the efforts of quiet, unassuming donors, the image applauds them; in so doing, it applauds each person who posts, likes, or shares its message – a message made popular by the very phenomenon it condemns. Despite our best intentions, “the whole wonderful thing about the internet is sharing” not just opinions, but accolades as well. It’s unavoidable.

So please, just open your hearts and your wallets to the suffering of the people you care about, and open your ears to causes that may at first seem inconsequential. You may open your mouth and your icebox to publicize your actions if you wish, or do your good discretely and without fanfare. Either way, you will get a nice receipt at tax-time, and the satisfaction that some “poor little guy” somewhere is thankful you exist.