Looking at, not beyond, our faces

So September is yet another Month, this time Craniofacial Acceptance Month. Yay?

One of the major, more established international craniofacial organizations mysteriously chose

#LookBeyondMyFace

As their tag line for this year. Headdesk moment. At least for me.

Isn’t acceptance looking at, not beyond?

Isn’t acceptance seeing the whole person, not ignoring something that’s a major part of them?

The politically correct thing, I guess, is to pretend that differences don’t matter, or aren’t consequential. But that is a complete fallacy. They matter.

A true acceptance or awareness campaign needs to acknowledge that they matter, not necessarily in a negative way. Mattering can be positive, too.

So that’s my hope, that sometime we can look at, not beyond, facial differences…

(Bracelet pic is a song lyric, I see you. I thought it was appropriate.)

Choose Kind, Kinda

So the trailer for the Wonder movie came out. What to say? 

Yay craniofacial conditions in the mainstream movies. Boo to the continued history of faking disabilities in the media. I get it – the pool of actors who actually have craniofacial conditions who they could have used is minuscule… but what kind of message does that send?

To the young people with disabilities, does it invalidate them being actually part of the story? Is it yet another message that they aren’t good enough? Is it yet another marginalization?

I’m hoping the media blitz associated with this movie is inclusive of the craniofacial community at least, but I’m worried about tokenism and overly-saccharine emo pieces. 

The tag line of the book and movie is #ChooseKind. Is taking actual disabled people out of the story kind to them, and to us as a community? Will it actually promote kindness, or will it further the othering of that-which-cannot-be-shown-onscreen? We shall see.

#ChooseKind, Kinda. 

https://twitter.com/WonderTheMovie/status/867357023951659008/video/1‬

The Wonder of No Pity


It’s no secret that I have a seriously conflicted relationship with the upcoming Wonder movie: Yay, movie about craniofacial differences! Boo, you couldn’t find an actor with TCS to do it? Yay, so many of my favorite actors (Daveed Diggs!)…

And a big boo to their marketing campaign. The existence of someone with a craniofacial condition (and hell, in this case it’s a fake craniofacial condition) doesn’t exist to make you feel all warm and fuzzy. A mother and son interacting when the son happens to have a fake!craniofacial condition shouldn’t be impressive.

This thinking comes from the thinking that disability is this awful thing that must be avoided, overcome and conquered…instead of something that just is

I actually thought the book did a pretty good job of walking this line…but I guess we can’t expect that much for Hollywood. It’s too bad because this is a really good opportunity to raise awareness of craniofacial conditions that’s potentially being wasted in sentimentality and mushiness.

Hoping the movie is better than the marketing.

Decisions


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.

How about: it’s complicated!

On Wonder & Representation


So apparently the news that the film adaptation of RJ Palacio’s Wonder is gong to feature a young actor who doesn’t actually have a facial difference is old(er) news, but adding Julia Roberts to the mix made it “new” news today.

I’ll admit: my first reaction was something akin to whaaat? How are you going to make this work? Why in the world couldn’t they find an awesome young kid with TCS? I’m sure he’s out there.

My practical side knows why: he’s arguably the best young actor in the right age range, this is a plum part, the logistics of casting such a specific thing… but this raises so many questions about the portrayal and inclusion of disabilities in the arts and especially in film.

To choose non-disabled actors to portray people with disabilities, the industry negates the presence of actors with disabilities (and discourages people from trying). It also suggests that the reality of a person with a disability on screen or stage is not welcome – that the mediated experience of disability through the lense of an actor is preferrable.

And I’m also asking about the real logistics of this: are we dealing with prosthetics? How will they do it and have it look realistic? Or are they going to go really meta on us and do something else?

A line in Wonder says 


and it’s like the culture has taken this too far – by removing the imagination completely by actually removing disability from the discussion in the actual, physical realm.

So we shall see how this turns out. I’m happy this book is out there and raising consciousness and awareness of craniofacial conditions with children…just wish the movie had gone further and cast an actor with a craniofacial condition.

When RARE cannot be “cured”

 
The  image above – of virtually all the big pharma companies – illustrates who is funding the Rare Disease Day activities I will attend after my week at NIH doing the Natural History Study for Moebius syndrome. The fact that rare and pharma are so intertwined creates interesting challenges for those of us affected by conditions that you cannot “cure”.
In med-speak, I have congenital anomalities. No pharmaceutical agent will make my nerves work right. Therefore, I am terribly uninteresting to most pharma companies. Not saying that I don’t rely on meds to keep me breathing and functioning, because I do… but there is no hope for a breakthrough cure that can be splashed over mainstream media and lauded by the lay community.

Answers to the causes behind Moebius syndrome have been slow to come, and when they do (I hope they do!) we don’t know what we’ll be able to “do” with that information. Maybe stem cells. Maybe something that has yet to be invented.

I should be thankful there isn’t a necessary rush to develop treatments, but when I hear of people in the Moebius community facing serious respiratory problems that can be fatal…a little part of me wishes we could find a big pharma company to take us on as their pet project and develop something amazing.

But first we need to know WHY.

Hay – It’s Moebius Awareness Day.

Sometimes you’re mentally pooped by doing the real life + internet awareness life + real-life awareness life… that a meaningful post just isn’t going to happen.

But horses always bring me back to my happy place. (and dogs, but that’s for tomorrow’s post!)

And for actual, legit info on Moebius syndrome not tainted by my tires silliness and ridiculous obsession with the Photofy app… see moebiussyndrome.org!

my face is my heart

September is Craniofacial Awareness/Acceptance Month. On one hand I’m of course happy: Craniofacial conditions are terribly misunderstood and largely ignored by both the medical/disability and greater society. It is, quite frankly, a weird disability to have. You are part of both worlds. You can pass sometimes, not other times. It is tricky.

Then come the tag lines that make me cringe:

Beyond the face is a heart.

I’m smiling on the inside!

…Foundation of Smile

Etc, etc.

Now beyond the obvious irony of the focus on smiles when the population I am familiar with perhaps cannot smile or smile conventionally, I am slightly weirded out by the discourse – “beyond the face”, “comes from my heart”… it puts a weird kind of dissasociation between one’s insides and one’s outsides.

I see where they are coming from, but from a disability theory point of view it’s so problematic. 

Being born with a visabile disability does not mean that one’s insides and one’s outside appearance are separate identities. My insides are irrevocably linked to my outsides, in both good and problematic ways. But they are linked. 

To me, awareness is as much for the people affected by what they are raising awareness for as for the general public – it is about owning it, putting words to experiences and feelings, about taking control of your personal narrative.

I just hope these narratives give voice to the complicated world of craniofacial conditions.

What I learned at Starbucks today

  

Or rather, what I reminded myself of.

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…

“Valerie?”

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…

Natalie

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.

Pile O’Awareness, and of History

2015/01/img_0368.jpg

A stack of t-shirts sits on my bed. They span 6 years, the entire United States, and come from a variety of experiences I have had in the Moebius syndrome and rare disease community. Some I wish I could relive, some I wish I could change my response to, some I am still not sure of. But they are all there, sitting on my bed in front of me,

These t-shirts represent communities, constructed by chance, by choice and perhaps by necessity. They are communities that sometimes I wish I could escape, but know I cannot. Communities that have shaped me and supported me and pushed me. Communities that have, most of all, taught me.

January 24 is Moebius Syndrome Awareness Day, commemorating the birth of Paul Julius Mōbius – a German physician in the 1880s who first described the syndrome. It is a time for awareness-raising, of course, but it’s also a time for reflection. About how we navigate the world with a rare disorder, about how we negotiate real-world life with the online community we have formed, about how we raise awareness in everyday life, not just one week a year.

I tend to be more quiet, and approach awareness raising in the same way – open to awareness-raising, but guarded. Probably too guarded, but that’s a post for a different day (or never). Other people are most comfortable doing it in large-scale ways. Both are needed.

All kinds of things are happening this weekend – get togethers, news stories, social media campaigns… I’m spending Saturday day working, and Saturday night undoubtedly catching up with what I’ve missed! I’m looking forward to seeing what is accomplished this year, and what will happen looking forward to next year and beyond.

My friend Kathleen Bogart just published a study about how awareness leads to understanding. And that is what ultimately I think anyone, but especially those of us living with unique medical needs, want. I don’t even care if you can’t remember what it’s called, honestly (best line ever “whatever-it-is-that-you-have-again?)… but understanding is paramount to acceptance. And we all, ultimately, yearn to be accepted. I think I, and others, are doing good work towards that goal.

So this pile of shirts represents a history, my history, with the Moebius syndrome community. It represents me navigating my unique journey. These are my choices, my desires and my mistakes. They are uniquely mine, just like all of the individual experiences living with Moebius shared on Moebius Syndrome Awareness Day.

Together, they make a visual embodiment of a layered story. My story.