It’s not every day I have the opportunity to articulate a
cogent argument against my brilliant former professor, so when it comes I just
can’t pass it up. Recently, in
“Taking
the Icy Plunge (or not)” Sean Philpott-Jones argued against the #ALSIceBucketChallenge. For those of you unfamiliar with this
challenge, it is a campaign to raise money for research and awareness of a
devastating disease, Amyotrophic Lateral Sclerosis (ALS or Lou Gehrig’s
Disease). The idea is: one person posts
a video of him/herself having a bucket of ice water poured over their head,
they then challenge three friends to pour a bucket of ice water over their heads
and/or donate $100 to an ALS charity.
The challenge has gone viral and has likely filled your facebook
newsfeed as it has mine.
ALS is a devastating disease that slowly immobilizes its
victims striking their muscles in any order: arms, legs, voice, diaphragm, any
muscle can be affected. People afflicted
with the disease lose control of their muscles and at its climax are entombed
in their own body, unable to move or talk, a condition referred to as “locked
in syndrome.” ALS claimed my dad last
October, so my family has a very personal connection with this horrible
disease.
In “Taking the Icy Plunge” the author argues that the
#ALSIceBucketChallenge has two major flaws:
1.
The challenge does little to raise ALS awareness
long term with videos containing little substance.
2.
In a fundraising campaign charitable donation
should not play second fiddle while public humiliation takes the first chair.
Ok, so to the first point, certainly the videos aren’t
classy, but (this year at least) they seem to be effective. At this time last year the Ice Bucket
Challenge had raised approximately $32,000 for ALS charities, this year $5.5
million has been raised. Clearly,
something is going right for them in 2014.
They are raising awareness of this disease and hopefully sparking an
interest in people to search and learn more.
Awareness and education are very different, while the videos are hardly
educational, I think the buzz they are generating is positive and could have
lasting effects. Putting more substance
into the videos isn’t a bad plan however, and I would encourage anyone
accepting a challenge to talk a bit about ALS, why it is important to support
charities that help victims of the disease, and post a link to a specific
charity with you video.
To the second point, I ask you to look at our society. We are a culture of sound bites, flashmobs,
and thoughts not exceeding 120 characters.
Anything (within the realm of moral of course) that gets people involved
and inspired to donate to a good cause is a worthy endeavor. It is difficult to inspire people to lighten
their wallets these days, even for a good cause. Wise challenge participants have been asking
for those challenged to play as well as donate and those not challenged to
consider making a donation.
On a personal note, the Ice Bucket Challenge has been a fun
diversion for my family this year, as I mentioned above we lost my dad to ALS
in October. For the last 3 years around
this time I would call Dad and ask “when are you going to start the walk donation
page?” You see, during Dad’s illness an
organization called ALS of Michigan really helped my family. They have equipment closets filled with tools
for ALS patients to borrow and return.
When you have ALS you need a lot of expensive equipment and depending on
your disease progression you can go from one piece of equipment to another
quite quickly. For instance, ALS
patients can go from cane, to walker, to scooter, to wheelchair within the span
of a few months.
ALS of Michigan lends these tools to pALS (people with ALS)
and they exchange or return them as necessary.
The wonderful workers at ALS of Michigan even helped my mom find and
figure out a portable shower chair in 2012.
This chair allowed my dad to travel to New York for my Masters program
graduation. You can’t really put a price
on that can you?
Each year ALS of Michigan hosts an event called the “Walk
& Roll.” It is their biggest
fundraiser of the year and The Joyful Jaywalkers (my dad’s name was Jay…cute
huh?) begin fundraising as a team at the beginning of August for the walk on
the last Sunday of September. This year
the early days of August ticked by and my fingers ached to dial up Dad and ask
“when are you going to start the walk donation page?” Sadly, he isn’t there to answer and though we
are all committed to fundraising this year, no one was very motivated to step
into Dad’s place and start up our 2014 team.
The 2013 walk was two weeks before my dad passed away. It was the last place many of our friends and
extended family saw him alive and it will be the last of our “firsts without
dad” in this horrible year of adjustment.
Starting the fundraising, whether or not we admitted it to each other or
ourselves, was a daunting and emotional task.
Denial was the way we all chose to handle these emotions, until about 2
weeks ago.
This was when our friend Vince was challenged to dump ice
water on himself and dedicated his video to my father’s memory, and it went
from there, friends challenging friends: everyone talking about my dad, how
great he was, how much they miss him, and asking for donations to fight
ALS. It may sound silly, but watching
friends and family take an ice shower in honor of Dad really warmed my
heart. It was also the perfect catalyst
for our campaign, my siblings all accepted when my brother was challenged, and
decided to dedicate our video to all of the wonderful people we lost this year
to ALS and those still fighting. When
your family is personally impacted you meet and grow to love many others with
the disease, so the list was long. My
sister set up our team fundraising page and we told everyone about the walk in
our video.
The challenge is certainly silly, but what are we Americans
if not silly right? And is there
anything wrong with being silly for a good cause?
My hope is that this challenge will inspire people to learn
more about ALS and support great organizations that help patients and
families. ALS of Michigan is one of
those organizations, if you are inspired please click the link below and
support the Joyful Jaywalkers in 2014.
