This week is Facial Paralysis Awareness Week. I did what one is now “supposed to” do in the era of social media: shared the posts, changed my profile photo to the designated Twibbon, so on and so forth.
Other organizations and people are doing things too, some of which make me vaguely uncomfortable as a person with facial pareisis (if we’re getting very technical). People are cutting half their hair, painting half their face in a strange showing of solidarity.
But they are missing the point.
Everyday life with facial paralysis isn’t over-dramatic or sometimes even obvious. People (hopefully) aren’t recoiling from the obvious. It’s the little questioning doubts, the assumptions people make, the side glances. It’s not extraordinary, but it is subtle and persistent.
So what could a person without facial paralysis do to show solidarity? Listen to us, embrace our similarities and differences. Work on efforts to improve understanding of differences.
And maybe think twice about doing over dramatic things that don’t reflect what life is truly like for some people with facial paralysis.
If by ‘loser,’ you’re referring to a man who’s greeted eight times a week by 1,000 people that stand as one, applauding until their hands are raw, cheering until their voices are spent, whispering, ‘He’s so much better looking in person,’ and laughing until their faces are contorted in an anguished mask that can best be described as a sort of Bell’s palsy.” – Larry David, presenting at the 2015 Tony Awards
Sigh. It happened again last night, that fine fine line between humor and being an asshole making jokes about people with serious medical conditions.
I have a sense of humor, sometimes a black sense of humor. I’m not immune to making fun of myself or my situation… but in no way is talking in terms of “anguished masks” funny or frankly acceptable.
But people laughed. And because people laughed, the roughly six million people watching at home think it’s okay. And it’s not.
Selfishly I am annoyed because theater is my happy escapist place (even if my favorite playwrights and lyricists write about heavy stuff) and I don’t like real life crap like this to intrude.
We’re slowly getting there with being less accepting of this kind of stuff, but it’s not happening fast enough… especially when it hits too close to home.
(and yes: title is an Avenue Q reference, proving that I do have a sense of humor!)
Wollner’s collection was inspired by her two-year long struggle with Bell’s Palsy, a nerve disorder which paralyses half of the face. She channelled the emotions of that period through oversized shapes and new textiles, which Wollner experimented with herself by printing on organza and laminating over it.
Of course, that made it nearly impossible to sew. “Going into it I didn’t know it would be that hard, but it made the shapes that I wanted,” Wollner said.
On some of those prints were faces, which at first glance sort of look like Hank from “King of the Hill.” But they’re actually facial exercises given to Wollner by her physical therapist. “The exercises had all these faces on them like, smile or raise your eyebrows five times a day, so I turned them into prints,” she explained. (Another touch that made sense after this explanation: The word “RELAX” printed down the back of her finale coat.) – Tyler McCall
I love fashion, and I love when disabilities or conditions turn up in the news in unexpected ways… so this is pretty amazing! I would totally buy some of this collection, if it was available.