My New Hero

This kid is absolute perfection. I think this is as sublime as human beings get.



Every one of us is "disabled" in many ways, some larger, some smaller. Each of those factors is a tiny yoga asana - a puzzle that can only be confronted by calm release rather than aggrieved contraction. That's a very counterintuitive reaction for most of us. Our clarity is tested; can we full-on accept the unacceptable? Can we fully inhabit, and open into, a situation which might, at first, make us want to gnash our teeth at the injustice and difficulty of it all? Can we embrace without distinction, and build from there?

Hunter Steinitz is a little girl with a horrendous skin disorder making her life unthinkably difficult. But she's cool. In fact, she's better than cool. She's done the hardest thing a human being can do: embraced What Is, maintained the larger perspective, and found happiness even though all her ducks aren't nearly in a row, nor will they ever be. In fact, she's even starting to go forward and help fix the rest of us. One can only hope people listen.

My favorite part of the video is cut off at the end. It shows her handing out cards to gawkers reading "I have a genetic skin disorder called Harlequin Ichthyosis. Aside from this I am a typical kid. Please feel free to ask me any questions."

Hunter, you are my hero. If I were younger, I'd be your best friend. If you were my kid, I'd be proud as punch. As-is, I soak in your clarity, your kindness, and your creativity. I know you're too young to grasp the significance of what you've pulled off. It just feels natural to you.

And if anyone calls you "brave" or "heart-breaking" or any of the other things people condescendingly say to those who deserve emulation rather than condescension, I swear, I'll....well, I'll look right into their eyes and explain, in the friendliest possible way and with a kind smile, why that's not really an apt way to understand what's going on here.

It was comparatively easy for Shakespeare to write his sonnets, or for Einstein to develop his relativity theory. Hunter's done something more impressive: she's solved the big question of being human. And skin's got very little to do with it. The rest of us - with less conspicuous disabilities - ought to follow her example. In any case, I can't imagine someone less deserving of pity. Pity, instead, us!

Here's a good article from her hometown newspaper.

Here's another video.