Voila, Representation!

I will confess, in a moment of weakness I hopped onto the Voila craze. And I like it, because it’s the first avatar type thing that still looks like me.

I have a long abandoned Bitmoji hanging around somewhere. I have an Apple avatar thingy, unused. I have a Facebook avatar that never sees the light of day. Because these things… just don’t look right.

I am generally a practical person. The statistical number of those of us with unique facial differences is so low that it makes total sense to not have the ability (how would you even do that?) to make an online avatar realistic. And are they even supposed to be?

While all these things are essentially escapism (and who does’t need escapism right now?) it’s nice to have escapism that keeps what makes me there.

Season Finale Worthy

Screencap from the 2020 season finale of Grey’s Anatomy

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.

Awareness is not Garish

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.   


Villainous Awareness

Young Johnny Bender, aka “Smiley,” was seen in the opening pages of We Are Robin No. 1 beating up Duke Thomas, one of the main stars of the series. The beginning of We Are Robin No. 8 (out Wednesday and illustrated by Jorge Corona) mirrors that sequence, with Smiley getting clobbered in juvie just as he’s about to be released to his disapproving father.

Smiley hasn’t gotten along with his parents since the plastic surgery to fix his Moebius syndrome gave him his Joker-like perma-grin, and the new issue shows just how devoted he is to Gotham’s Clown Prince of Crime and begins a story arc where he amasses a group of like-minded followers. – Brian Truitt, USA Today

This greeted me this morning on Facebook in a review of We Are Robin No. 8… and made me go huh. Also made me sigh, that this is the kind of representation Moebius syndrome receives. It’s the kind that organizations such as Changing Faces in the UK works to combat. 

But it also kind of made me go “that’s kind of cool – maybe someone will learn something!” – not necessarily that people with Moebius or any other visable difference are destined to have psychological issues and to be evil, of course, but that things like Moebius do happen and you might just encounter someone who has a facial difference in your everyday life.

Because that’s what’s important: normalizing and accepting differences. So maybe this comic will at least get Moebius syndrome out into the public conscience a bit. Would love to get in touch with the creators and learn how this came to be and if they have a personal connection to Moebius.

Visible Differences and the #ToyLikeMe Movement


A few years ago, I was part of a group in charge of choosing teddy bears to sell at the Moebius Syndrome Conferences. We found that it was actually really, really difficult to find a non-smiling teddy bear! Finally we found a neutral-mouthed teddy bear that we chose. 

Makies, a British company, is among a group of advocates and manufacturers embracing the #toylikeme movement – offering customizable 3D printed dolls for sale. I’m actually not really a fan of the heads they use (those eyes are kind of creepy!) but I love the concept.

I probably would have loved more dolls with differences like mine growing up – I was always playing hospital with my Playmobils and loved it when my American Girl dolls came back from the “hospital” (aka with a new head after the hair was beyond repair!) wearing hospital gowns! I don’t think I was necessarily harmed by not having toys that looked like me, but would have loved to have this available to me. 

I like that companies are embracing both diversity and customization at the same time – with the advent of technology like 3D printers I really see things like dolls with more involved facial differences being available very soon.

I hope next time I’m seeking a non-smiling teddy bear the toy landscape will be kinder to children with visible differences.

Pondering Grumpy Cat’s Appeal & Facial Paralysis

Grumpy Cat Unveils 2014 Macy’s Holiday Windows | Union Square

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.

Recommended Reading: About Face


I love photography. I find it simple yet beautiful. I wrote my master’s thesis on the Positive Exposure photography project, and I love seeing photographers exploring differences.

Photographer Sage Sohier spent time at the Facial Nerve Center at the Massachusetts Eye and Ear Infirmary in Boston, photographing patients – most before surgery. I loved how frank these photographs were, not that they glorified distinctive-looking faces, but that they didn’t try to hide or camouflage anything. I found them simple and beautiful.

Facial difference is a strange disability to have, in that it is not in the public’s consciousness. I love that the world – at least the art/academic world – is paying attention to, even highlighting, them. For both people with congenital or acquired conditions (I would have loved this book as a child!), it’s a remarkably powerful thing to be exposed to people who look like you.

Overall, I highly recommend this book for anyone affected by or interested in facial differences.