Today, my thoughts on the ice bucket challenge appeared on cognoscenti, the ideas and opinion page of Boston’s NPR news station, WBUR. my side of the point/counterpoint is below and you can see both sides here.
ALS is an awful disease.
As a surgeon who has performed tracheostomies on ALS patients who have been robbed of the ability to breathe, I have experienced the disquiet of wondering whether I am helping them or prolonging their suffering as they are progressively trapped, mental faculties fully intact, in a non-functioning body.
Like many awful diseases, ALS deserves to be the subject of research, inquiry and the quest for treatments and a cure. For this reason, I feel good about the uptick in donations for ALS research sparked by the Ice Bucket Challenge. Unfortunately, too few of those who have accepted the challenge include anything meaningful about the disease or about how participating might help ALS patients in their online posts about their ice bucket experience. This reduces their participation to, at best, the appearance of altruism wrapped up in the aura of being tough enough to endure a very cold dousing. At worst, the Ice Bucket Challenge is nothing more than “me too-ism,” blindly hopping on to the latest viral craze without understanding why it is a good deed.
In the era of social media, we have more opportunities than ever to support worthy causes, from rare diseases and prevalent cancers to vulnerable children and abandoned pets. Sometimes, we donate because someone we know is running, cycling or building for a cause. Sometimes, the cause holds special meaning to us. Perhaps we lost someone to the rare disease, or our own good fortune inspires us to help others who don’t share it.
Although donations to ALS charities are up, I am not convinced that awareness of the disease, which is the other object of the challenge, is. I wonder how many know what ALS stands for, or that it is also known as Lou Gehrig’s Disease. How many know that the disease causes progressive loss of motor control of bodily functions? How many know why a cure remains elusive?
However you ascribe meaning to the act of giving, it should be more than just jumping on a bandwagon. That is why this silly challenge makes me sad for humanity. Are we challenging each other to act charitably because it’s the right thing to do, or because everyone is doing it?