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?
I agree with you, and thought this piece was really well written.
I agree too. The stunt is just a shock for the system. it’s sad someone had to think of something this stupid to raise awareness for the disease. And it’s sad people are jumping on the bandwagon just because the stunt went viral. The disease is serious, but still just one of many that need awareness and research. That’s why I doubt that the majority participating in this challenge really care about the disease.
Thanks for writing this piece. On the one hand, I guess there’s the school of thought: “no publicity is bad publicity”. I’m sure that since the ice bucket challenge started, some people have taken the time and effort to actually understand ALS as a disease process.
On the other hand, I have to agree with you – I have to believe a lot of people participate in this social media craze semi-mindlessly. For many, I have no doubt that the ice bucket challenge serves only to underline their digital persona of a do-gooder, altruistic type. As physicians, we know more about this terrible disease than most, and the thought that many people are likely parading their ignorance behind a facade of “being cool” is unsettling.
My thought coming away from this is that social media is a double edged sword in raising awareness. In some ways, it truly does help raise money and awareness for a cause; on the other hand, it is simply harnessed as an outlet for our culture’s increasingly (and sadly, I might add) self-promotional urges in the digital world.