The Ice Bucket Challenge: My Perspective

I've posted a couple of things on my Facebook-- an article and a video-- that have been critical of the IceBucket challenge.  People just don't seem to understand why I would be so critical of efforts to raise awareness about a disability when I work in the field of disability rights. 

That's just it. I work in the field of disability rights. I'm thrilled that all of these people are donating money to help find a cure for ALS, a fatal condition with no cure. 

But as someone who has worked for and alongside people with ALS for the last 13 years of my life (yes, you read that right) I wonder where all of these celebrities, and public figures, and ice dumpers with their big checks have been before now. 

Where was their motivation? Answer: there was none. So why did it suddenly appear, full steam ahead?

I'm not saying this is true in every case, but I do think narcissism plays a contributing factor. The world can see the good they do, can watch them feel the momentary discomfort of  cold water cascading down their bodies on You Tube-- a moment of discomfort that compares NOTHING to the months and years of discomfort that people with ALS experience while losing control of their bodies, and ultimately, their lives. 

And since we're on the subject of discomfort.. Do you know what people with ALS need more than your discomfort or your money??

Your friendship. 

Your love. 

Your support. 

I don't like these videos because they perpetuate the sense of "otherness". Many people don't know someone with ALS. To them, they're just these "poor people" off "suffering somewhere."

But here's the truth. Anyone could develop ALS. Or any other disability for that matter. 

And from what I've seen of people with ALS, they do all they can not to suffer, for as long as they can, fully living their lives until the fullness is drained from them, without their consent. They live with ALS, until they don't live anymore. 

And it is uncomfortable to think about... But you could become one of "those people" everyone feels so sorry for. 

You, yourself, could acquire a disability. 

And take it from the perspective of someone who already has one -- no amount of public dunking videos-- from Martha Stewart or Justin Bieber, or even the President himself will change that. 

They won't affect how the disability ravages anyone's lives. They will make a positive impact on awareness--yes. But I'd much rather have someone become aware by getting to know me, befriending me, working with me for the cause. 

Because we're all in this together. All under the same ice bucket. And we're all eventually headed toward the same end.