Clarifying a statement I just made

on Care2.com, I signed a petition to help end Spinal Muscular Atrophy a disease that affects children causing a severely degenerative debilitation of a human being’s ability to function. Cognitively, people are fully developed, except for the fact that they’ve been unable to move and have required 24/7 care.

Last night I watched an episode of “This American Life”, (an episode that I’ve subsequently found out won an Emmy) about this guy, Michael Phillips, a victim of SMA.

Anyway, I was deeply moved by his story and struck by how totally normal he seems in every way as a human being except physically. I’d say he’s a little dark and morbid in his writing, but he also has moments of elation and delight in beauty, which he also eloquently shares. I guess in some ways, he’s more fully self-expressed than most, a striking fact considering his inability to move. Or breathe without a machine.

I was also struck by the commitment of his mother, who’s attended him 24/7 since his childhood. I was dumbstruck by the life she has had, doing absolutely nothing other than caring for her son. I know that 30 minutes of television reveals only a knothole view into someone’s life, but the entire story, the situation – understanding the values and desires of the people involved – it was all quite dramatic, and I was fully taken.

I was also struck by how absolutely human and normal this physical anomaly was, whose life has been made possible by innovations in medical technology and the relentless vigilance of a committed parent.

There was a moment when I had my “healthcare reform” buttons pushed when I heard that “the state” basically pays for all Michael’s (and his mom’s) expenses. Of course we should pay for his care. he’s pretty incapable (or it would seem at first blush) of making a living, at least in our capitalistic-valuing-productivity-over-health culture. (I personally think he should pursue a life as a writer, something he clearly does rather well)

Anyway, I signed this petition and my “customized note” could read like I’m in favor or pulling funding from Michael or families like his. Not at all. I think that finding the cure to this disease means that in the future, children would never be afflicted with this “totally rude” disease (as one commenter to Michaels’ blog put it). And that would ALSO mean that we, the general public, would not be paying what must be astronomical medical bills. I’d rather invest 50 million now to find the cure and save hundreds of millions over the years. That’s what I was trying to say.