So, it happened again. Moebius syndrome ended up on television! Actually it did not end up on television, a really bad imitation of it did. It puzzles me that writers and medical advisors will go out of their way to “discover” these wonky diseases, then do a terrible job at them.
See her eyes? They would disqualify her from a diagnosis stat. One of two absolutely necessary diagnostic elements is the inability to move your eyes laterally, for heaven’s sake!
If you’re going to do it, at least do it write. Don’t exploit it then fail it.
And this doesn’t get into the question of… what does it mean that my rare disease is season finale worthy? Is it the weirdest, the worst, the most sensational someone thought of? Having lived with it, I have context. Others do not, I guess.
Next week is Face Equality Week. At first I kind of scoffed at that, because burnout, quarantine etc etc – but then I reassessed. I like it. I’m a bit perplexed as to what I’m supposed to do to “raise awareness” on all these various awareness days/weeks, beyone “hey! I exist!” – Face Equality is simple, powerful, meaningful and does a great thing in spreading the challenge. Yes, those of us with facial differences are in a position to advocate – but the challenge is also with everyone.
It’s just how we, as people, should treat each other.
So once again Snapchat, in all its weird dysmorphic glory, gave itself a facial paralysis-mimicking filter.
It’s funny, because in some ways I’m not completely insensitive to the weirdness of medical conditions. I sometimes laugh to myself as I delete the Google Alerts I get listing Moebius Syndrome as
Top Ten Weird Medical Things!!!
…but somehow, I can’t take this with a grain of salt.
I admit: I don’t get Snapchat. I’m not a fan of notifications on my phone, not an overly-selfie kind of person. So sending slightly distorted photos of yourself to friends just seems a bit odd.
Having said that, there is a difference between the humor in superimposing dog nose and ears onto yourself and playing around with morphing your face and thinking of that as funny.
There is humor in everything. Even facial paralysis. But that humor needs to come from the source. From people with facial paralysis. It doesn’t need to come from pretending and emphasizing the oddity.
I hope we in the facial paralysis community continue to create our own humor, and that it overpowers the humor of the Weird that things like Snapchat filters emphasize.
I wrote this today while watching the Super Bowl and remembering how much I indeed enjoy Lady Gaga.
One doesn’t listen to Lady Gaga to overanalyze the lyrics, because they are actually a bit weird and nonsensical but I’m kind of still obsessed that a song about facial expressions, the lack thereof and the value we put on them and perhaps shouldn’t is out there in the universe and is being listened to.
That half time show was just a nice reminder that the song exists and of how powerful it can be to hear it sometimes…
I’ve probably written something similar to this before…but I’m thinking about it again. We all go through our lives differently, influenced by internal and external factors. The treatments and solutions for one are not the solutions for another. I can’t tell someone who doesn’t like school that doing well and finding my academic niche was the key to success for me.
But what about when they ask? How much information do I provide? How do I articulate just how much childhood surgeries affected me and how I dealt with childhood PTSD post-surgery without revealing too much about my inner psyche (because really, how much detail do they want?).
So I stick to the basics: that reconstructive surgery wouldn’t have worked in my individual situation due to the slight movement I have. I don’t share that I sat in on a conference presentation by the pioneering surgeon at 11 (yes, I was precocious – I also have notes about genetics from that conference) and was scared. I was worried the professionals were telling me I wasn’t good enough as is. That I needed to be fixed.
Luckily I had family and professionals to guide me through that angst, but how do I even describe that beyond the rumination a of a once overly-sensitive, angsty pre-teen?
It wasn’t right for me.
This seems to be the only way I can condense years of thinking about it, but it doesn’t seem sufficient. I want to emphasize that I couldn’t have handled it emotionally but without being like “yeah, I had LOTS of issues!”
I think new surgical methods are awesome and definitely less scary-looking in process (just wish everyone could get insurance to cover them!) and I love that people are getting good results with them and are happy. Would that have changed my decision process? Who knows.
All I know is that I wasn’t ready for surgery and am thankful I had the support I did. But that I am so happy for people who had surgery and are happy. And sad for those who didn’t have it and are unhappy, or had it and are unhappy.
I will be the first to admit it: I don’t really “do” Snapchat. I downloaded it but then just never checked it enough to actually see things, and the inability to browse users without knowing their exact username is maddening. I’ve played around with it a bit and don’t hate it… I just don’t have time to constantly keep up with it.
This week Snapchat came out with a bunch of new morphing filters… One of which gives the impression of one-sided facial paralysis. <<headdesk moment>> I mean besides the more obvious question to me of why it’s entertaining to send weird morphed photos of yourself to friends, it also comes back to the fact that it’s supposed to be funny. And that differences in appearance aren’t inherently funny or things to be gawked at.
I’ve probably written this before here, but appearance differences are kind of a strange medical condition to have. You skirt the line between the disability community and “passing” – but neither are quite right. I’m almost thankful sometimes that my orthopedic and neurological and autoimmune (phew, that’s a mouthful!) issues made it easier for me to join the disability community at a crucial age.
Appearance djfferences without other impairments aren’t quite embraced as disabilities by some…and since they aren’t thought of as a protected class, it’s not seen as in poor taste do things like presenting facial paralysis as a funny and weird thing you can try on. (Now by no means am I against humor: check out some of David Roche’s material about facial differences).
I don’t think Snapchat will remove the filter, so all I can hope for is that people start to think a little bit before using it. Some great organizations are working towards that goal, and I’m looking forward to what they are able to achieve.
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.
I walk up to the Starbucks ordering counter, give the barista my order for a Venti Mocha Frappuccino Light with my free Starbucks drink (Yay! Because their Frappuccinos are rather overpriced), she asks for my name, I give it to her, she repeats back to me. All good.
Go to the other end of the counter, and wait for my drink. After way too long of a wait a different barista comes up with my drink…
Instantly I am angry… at myself for not speaking clearly enough, at the barista for not understanding… all the fun irrational thoughts that come out of life with a speech impairment.
But however annoyed I am I also really need my coffee after my nearly 3-mile walk. I grab the Frappuccino and step outside. Then I read the name on the cup…
So all that angst was really not necessary. Barista 2 just couldn’t read Barista 1’s handwriting. I was clear enough.
I am a perfectionist and hard on myself, especially when I know I can do “better”… but I’m learning to let go of what I cannot change.
And sometimes that means grabbing the drink that is on the counter if it’s the right one, no matter what name is called. You may be pleasantly surprised.
So Grumpy Cat helped open the season for the Macy’s San Francisco SPCA windows yesterday – one of my favorite holiday traditions ever, I remember when they used to be in the old Gump’s – and of course got all kind of attention because, well, he’s Grumpy Cat.
And I admit, he amuses me. His nonchalance is endearing. But then I wonder… is being amused by this slightly morose-looking feline the same thing as laughing at someone for the way they look? Especially for me, the idea of being laughed at because of his dour expression rubs me the wrong way. Granted the cat has no perceptions of being teased, but what kind of precedent are we setting.
But then I look at the persona his “people” have crafted… and it’s really not that different from what any of us who look different have done, using what we have to the best of our abilities and compensating for our weaknesses. He is catty (no pun intended), hilarious, and scathing… but all in the spirit of fun. He demands to be looked at and respected, which I think is a good lesson for anyone in taking charge.
I guess I end up rather equivocal about Grumpy Cat, but admit to finding his marketing strategy hilarious and – in a bizarre way – inspirational.
I haven’t written much about health stuff lately. Not that it’s not happening, things are just status quo – which is both bad and good. Wishes my autoimmune system would get its act together and stop attempting to self-destruct, but grateful for good doctors (and cortisone!)
Yesterday I had a definite “this so would only happen to me” moment featuring, of all things… kale. I just started getting a CSA box from a local farm co-op (which I totally love!). It has been featuring lots and lots of kale. I like raw kale in salads, but have sort of failed miserably in actually cooking this stuff. Looking up recipes, I found about a zillion out there for “kale chips” and decided to try it out. Made them on Tuesday night, and they were pretty decent – probably could have been a bit crispier, but okay overall. Stored them for lunch the next day (bad move #1: do not put kale chips in baggie. They get rather soggy).
By lunchtime yesterday, I was faced with something in between kale chips and kale salad. Not horrible, but not horribly appetizing. But because I work in that rare library without a library cafe (probably best for my budget, though!), it was all I had to eat.
So mindlessly eating my kale when it happens: it gets stuck between my teeth. Stuck hard. And do I have floss with me at work? Of course not! (note to self: buy floss). Luckily for me, it was stuck in the side of my teeth which at least wasn’t embarrassing, but it sure was painful!
Got home and got to work on extricating said kale from my teeth. Easier said when done when your mouth is so small that even your dentist remarks on how hard it is to floss. Between my electric toothbrush, flossing attempts and even (at the desperate end) resorting to my fingers, kale was extricated with a tremendous amount of pain and one chapped/sore mouth from all that flossing!
Not exactly the way I was intending to spend my afternoon after work… but that is the story of my kale!fail. Needless to say, I may put it on my exceptions list for the time being!
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.