On Being a Pariah On Facebook and the Ice-Bucket Challenge

At this point, if you don't know about the ice-bucket challenge that is circulating on social media, you are either living under the proverbial rock or you're just very, very lucky. I was "challenged" quite early on and declined to dump the water over my head, not because I'm afraid to get cold or because I'm a hater or a spoiler, but because there was something about the whole thing that got on my nerves. I wondered if it was my own ego getting in the way of having fun along with millions of other people, many of them my own friends and family, including my sons. I wondered if it was jealousy, because I've been trying to raise money and awareness for epilepsy causes for the last two decades and, most recently, for medical marijuana. I figured it might have to do with my general dislike and growing mistrust of the non-profit world, its ties to pharmaceutical companies, the vast amounts of money being exchanged with ever dwindling amounts directed toward real research and cure. I wondered if it was just my own crotchety contrariness. Maybe it was all of those things or none of them, just that weird instinctual feeling that I am hard-pressed to articulate.

In any case, I watched a few of the videos, pretended to enjoy a few more and then quit clicking. Then I read this, posted by a friend, a survivor of breast cancer and, evidently, a fellow ice-bucket challenge pariah. It's a statement by the Breast Cancer Action Group who has also admirably argued against the whole pink ribbon campaign, arguing that the vast marketing machine that these "campaigns" fuel works against research and cure.

We are approaching illness and healthcare assbackwards if we continue to determine which diseases get critical research and support dollars based on the appeal and fun factor of their fundraising campaigns! This is a mad way to confront illness and disease. In this new world of philanthropy by popularity contest, the future looks very scary. Only diseases lucky enough to be the beneficiary of a viral, “fun” campaign will capture public attention and funding. Savvy marketing, motivated self-starters, random acts of kindness will determine who gives a toss about people dying and the disease or illness they are dying from.This haphazard approach to healthcare and research funding isn’t the solution. No single life-threatening illness is more deserving than another. But all this wonderful generosity from a caring public willing to embrace the cause of the day serves as another nail in the coffin of a different kind of solution to illness, disease and ill-health—a solution that requires government funds, public money not private giving, that ensures people everywhere are able to access quality healthcare; that makes decisions about the allocation of research dollars based not on cyclical fads or randomly successful, social media campaigns but on evidence-based needs and outcomes.The #IceBucketChallenge is well-intentioned and has raised a lot of money for the ALS Association. But this disease-by-disease popularity contest approach to funding research is not a sustainable way to confront illness and disease and pushes responsibility for public health onto the private sector. This takes us in the wrong direction. We all deserve better.

Thank you, Yvonne, for turning me on to this, for helping me to figure out just why I couldn't do the "challenge" and for educating me about breast cancer and efforts to treat and cure it.

You know, some people are going to read this and think, at best, that I am a Debbie Downer and very short-sighted. At worst, they'll think I'm arrogant and just putting people down that choose to do the challenge. Even my sons gave me a hard time. But that's ok. I get it -- I get both points of view.

For the record, I made a donation to ALS, a horrific disease that has claimed the lives of several people I know and love. I sure hope they figure out how to cure it soon, and I hope we as a culture and a country can move toward more communal values -- maybe more lasting and comprehensive than filming ourselves dumping ice-water over our heads or buying pink Kitchen-Aid mixers.