Hey kids! It’s me, Stephen the Wonder Brain (but not Stevie Wonder, that is a savant with different skills and a different disability), one of the smartest men on the planet and currently the subject of a feature film starring Eddie Redmayne (“Les Miserables”).
If you don’t know about the things I’ve accomplished in the name of science and the tremendous contributions I’ve made to coffee tables and bookshelves, you still probably have seen photographs of me wheelchair bound, or perhaps one of your friends has mimicked or mocked me in a mean-spirited but amusing way.
The photo above is me in happier times, with me wife, pre-debilitating disease.
As something who has survived with ALS (or Lou Gehrig’s disease) for almost 50 years, naturally I have some thoughts on the Ice Bucket Challenge.
The challenge purportedly raises awareness and support for the disease which has yet to bear my name, but I have my doubts. (hint hint spoiler alert: I think the ice bucket is actually a pile of shit)
I’m glad you think you’re helping me, but you’re not.
For one, let’s start with the fact that pouring ice over your head is, let’s say, um…tangential to the condition of ALS.
A brief history of the Ice Bucket Challenge: http://www.slate.com/articles/technology/technology/2014/08/who_invented_the_ice_bucket_challenge_a_slate_investigation.html
There are various myths embedded within-celebrities who took up the cause, some dude with ALS who may or may not have been drunk and then dove into ice water-but the true mechanics of the original ‘Big Dump’ may remain beyond most understanding. It is something for social scientists to ponder and perhaps pseudo-intellectuals like Malcolm Gladwell will attempt to locate the ‘tipping point’ of the ice bucket.
For now, let’s deal with the present, what IS, where we have come, and how we must continue on into the future.
Raising awareness for an intractable problem like ALS is always a tricky business. Similar to the ‘stand up to cancer’ ad campaigns, there is no enemy, no obvious solution that money will solve, no apparent way to ‘think around’ the issue to find answers. Like any disease which is genetic, the tragedy arises from nowhere and ways to ‘explain’ or reason ‘why’ it happens to people arrive at dead ends.
To ‘raise awareness’ for ALS is to fall down the rabbit hole, because why pick ALS over cancer, Down Syndrome, clinical depression, old age, dwarfism, or any other disease which cripples people’s ability to function normally? Hell, let’s take it even further, what about people who have lost limbs, or organs, or family? Why does ALS deserve all this attention at the expense of anything else?
And what if all that money leads to nothing? Pouring money into research is either like investing in a rising stock or throwing cash down a wishing well.
WHICH DOESN’T MEAN YOU SHOULDN’T DO IT. But I’d call into question whether this is truly the best opportunity to demonstrate self righteousness or to seek approval from the online community that you are objectively a kind and caring person.
Am I allowed to say that your dollars and time are twice as valuable spent trying to fix a more objectively solvable crisis, such as gun violence, homelessness, or even rape culture?
Of course I am! I’m Stephen Hawking. And you’re gonna listen to what I have to say.
So I have a new challenge for you: think of an issue you really care about, be it ALS or military conflicts or human trafficking or even something less tragic and more intrepid like solar energy investing, and donate money and/or time to help improving your cause celebre.
BUT (and here’s the tricky part)…
don’t tell anyone. Don’t nominate anyone. Just do it. Do it for yourself. Do it because it’s the right thing and the act itself is enough to make you feel good. Let it be your secret pride.
And if you can’t, please don’t be too hard on yourself. Who’s judging? Everybody is too busy dumping ice on their head.
ADDENDUM: This was not intended to belittle the cause of ALS research, but rather to belittle the Ice Bucket Challenge and/or the need for such public self-promotion and social media hoopla.
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