Tuesday 26 August 2014

Ice Bucket Challenge Round 2: The Detractors

A quick rant from my side of the fence, re: Ice Bucket Challenge detractors.

First, let me say, you have every right to your opinion and distaste for the Ice Bucket Challenge. 
I get it – it’s annoying and you wish it would go away. 
It will.  
But until it does, do you really have to keep criticizing it?

Allow me to respond to the three criticisms 
    that I hear most often (in order of frequency):

It’s an irresponsible Waste of Water

I live in Southern Ontario, which like much of North America is made up of neighbourhoods of people who wash their cars with water, fill buckets of ice to cool beer for outdoor parties, use fresh water in their toilets (and flush after only peeing), water their lawns, and carry around a variety of “designer” waters in plastic bottles.  I’m not suggesting that we should ignore water issues, but if everyone in Ontario reduced toilet flushing by one flush a day, we would save more water than has been wasted in all the Ice Bucket challenges thus far.   If all of us were to learn to drink warm beer and forgo the iced cooler at the cottage – just for the Labour Day Weekend – we would save more water than has been “wasted” on the Ice Bucket Challenge.  (I will grant that my math is intuitive.. but you get my point)
Should we be aware of water as a right for all humanity and a limited resource? Absolutely!  But let’s get our priorities straight and really address the issue rather than piggy-backing it to a desire to “dislike” the Ice Bucket Challenge.  If Maude Barlow wants to talk to me about it, I am listening – but I’m less inclined to take derision from someone who just finished watering their driveway.

(btw, please consider devoting time and money to getting water back into Detroit or the Gaza)  http://www.blueplanetproject.net/


Only 600 die of ALS in Canada in a year; there is greater need elsewhere.

Yes, that is absolutely true.  
In my life time, I’ve known six people with ALS– which is a particularly high number for most people (apparently).  I’ve personally known less than six who have died from breast cancer, but I don’t tell my friends that they should stop running, walking, shaving, wearing ribbons or donating money to breast cancer research and support because the numbers aren’t as high.  
I don’t recall people counting heads when Live Strong bracelets were making the rounds and declaring that testicular cancer wasn’t important because fewer than 400 deaths occur in the U.S. in a given year.  
I don’t suggest that we should ignore the horrific treatment of First Nations Women in Canada because there may be more woman dying elsewhere?  
I don’t suggest that people shouldn’t give money or support  to my church because it’s not as big as other churches.  
Size has nothing to do with it.  There are people suffering and dying and their deaths are no more palatable when they are in a large cohort.  Nobody is comforted by the fact that their mother was the only person to die of a particular disease this month…  
We need to embrace the philanthropic impulse wherever and whenever we can.  I would also suggest that  because ALS affects so “few” people, it is very hard for ALS to get on the giving radar; hard for ALS to raise money for research and support.  Who knows, with more money raised, maybe a cure in possible in our life time.  A cure that wouldn’t be found without the sudden influx of research dollars raised by the Ice Bucket Challenge.

The reality is that until a couple of weeks ago, most people were blissfully unaware of Amyotrophic Lateral Sclerosis, and barely knew Lou Gherig as an old time baseball player.  Those who were aware, didn’t want to talk about it, because it’s a bloody terrifying disease and nobody wants to hear about fears, impotence and sadness.    Silence provides NO support, raises NO money and leaves those suffering with the disease or those caring for someone with ALS isolated.   I had a call last week from the daughter of woman who died from ALS – she saw my Bucket Challenge and wanted remind me and thank me for the time we spent together over a decade ago as her mother faded away… and in that conversation our isolation was relieved.  Isolation even a decade later because nobody wants to share those sad stories… except they aren’t stories to us, they’re very close memories.    I’ve talked with a number of young people; I’ve talked to my son about ALS in the past 2 weeks, conversations that we’ve never had before and would never have had without the Ice Bucket Challenge... which leads to the final criticism:

People don’t know what they’re doing it for.

Maybe not everybody – but many do and others have just provided the invitation to learn more.   And, in spite of this ignorance (or maybe because of it), ALS Canada has raised $7,500,000 from the Ice Bucket Challenge (as of this morning – Aug.26) and have added tens of thousands of registered donors – people that they can continue to contact, educate and perhaps motive to support people with ALS in ways more “palatable” than dumping ice over their craniums.   Or maybe, some of these folks get involved and discover that they have the ability to help individuals and communities, but assess that there are communities with greater needs, and move to help other causes, become involved politically… who knows?  
Not me.  
What I do know is that the Ice Bucket Challenge has been an invitation to get involved in a small way… and it just might be a gateway charity for some who have never found the impulse, or been too overwhelmed by the need and number of charitable pursuits, that they have never donated, never volunteered, never tried to reach out.

Ultimately, I see the harm of the Ice Bucket Challenge as very minor, even if the annoyance is high for some.

I see a great potential upside, even if the full potential isn’t realized.  And honestly, nobody is asking you to participate if you don’t want to…  go back to cheering for your favourite sports team (you know the one whose Jersey you wear with such pride, even though it looks goofy) and relax, it’ll be over soon enough. 


Or, I could be wrong. 



Tuesday 19 August 2014

Ice Bucket Challenge

So, in response to a challenge, I dumped a bucket of cold water on my head.  I also donated $100 to ALS Canada  (   http://www.als.ca/   ) .  It’s kind of a fad right now… Everyone from Lady Gaga to Sesame Street’s Cookie Monster has posted videos of the downpours.

In the past couple of weeks, $15,000,000 has been raised in the U.S and in the past 4 days, over $130,000 has be raised in Canada with over 3,000 new registered donors.  

There are also several folk who disdain this new “fad”.   Celebrity Comedian Ricky Gervais wryly tweeted “Dear Celebrities, OK now that’s enough. Please stop pouring lovely fresh water over your heads” – Africa.    He’s got a point…  And yet, I think it’s a good campaign.

I have been minister/companion to  a small handful of people  as they struggled with ALS.  I have been there for the last breath of two and presided over funerals for another 4.  ALS, or Lou Gehrig’s disease sucks. It is a progressive neuromuscular disease that kills nerve cells and leaves victims paralyzed.   Rarely have I felt so impotent, as when I have watch once lively and vibrant people disappear into the living prison of a body that no longer responding to their commands.  I have seen the wit and intelligence behind their eyes and wished that I could somehow reach inside and let them free… but only death has been able to do that.   
So, for me, the bucket challenge has been a small way for me to actively share my grief and do a small bit of good.  The money donated/raised matters a great deal – but for me, it was also a brief memorial to lovely people who slipped away from my grasp.

I believe that part of the genesis of the “Ice Bucket Challenge” was to share with others a brief fleeting moment of what those with ALS experience… for a few seconds as the ice and water cascaded down my body, I felt a paralyzing numbness that is a unique feeling for me, but a ubiquitous experience for those with ALS.  If we seize on this moment, we can talk with each other about the experience and perhaps find a small window that leads to greater understanding of what our love ones are experiencing as the disease takes hold.   The conversation and engagement matter…  If the shocking cold were to only make people go to the website and discover that between 2 and 3 Canadians die every day as a result of ALS; if it would inspire people to go deeper into the website and discover the ways that they can support research and patients… then, it just may be worth all that water.

For now, I’m content that the ALS society of Canada is very happy with the response to the Ice Bucket Challenge; I’m content to have talked to 5 different people about ALS in the past two days;  I’m content that several of the youth in my community have been inspired  (it was one of them that challenged me)… and I’m content that so many people are recognizing the ALS society as an organization worthy of financial and volunteer support.


Or maybe, I’m just all wet….