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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.

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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.

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Smiling Semantics

So I’m not usually one to be caught up in the semantics of it all. I mean, statistically speaking, the chances that one has a condition resulting in facial paralysis/paresis  is very very low. So why is it sometimes a punch in the gut when organizations for other craniofacial conditions  focus SO much on the smiling part? Like, “she may have this and that… BUT SHE STILL SMILES!!!”

So where does this leave those of us who, for various reasons, cannot? Where do we fit into this equation of things one still has even when faced with challenges? Is it really that bad (of course not). 

This stream of consciousness brought to you by:

  
And for the record: my dog, friends & family, good coffee, NYC, theatre… make me half-smile. And that’s enough.

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Awareness & What It Means

This month is, super-coincidentally, an awareness month for 2 conditions I have – a craniofacial condition (Moebius syndrome) & alopecia, a much more common autoimmune disease.

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Besides the fact that I’m a bit bewildered by the fact that there are two different craniofacial months each supported by different organizations, I think it’s great to see what various organizations are doing and how they incorporate other organizations to spread the word.

The American Girl company posted a great photo of their “wigless” dolls – perfect for young girls with alopecia or who are undergoing cancer treatments. I loved that it was important enough to feature.

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I seeing RJ Palacio, who wrote the children’s book Wonder – about a boy with a craniofacial condition – speak tonight and I really think she does a lot to spread the word about craniofacial conditions. Or at least I think it could, so I hope it continues to spread both her message about kindness and about awareness for craniofacial conditions.

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NYT: “Publishers Revel in Youthful Cruelty”

I found this article fascinating.  I have to say that, as much as I loved Wonder for the facial difference angle, I completely understand the NYT’s view that

For publishers and authors it has been hard to miss the perfect synergy that results: They can promote a cause that most people avidly support while promoting their own products.

That’s the danger I see, of trying to address what is a legitimate problem while not sensationalizing or exploiting it.

Yet at the same time, it is a very important and serious.  It’s a fine line in our increasingly-commercialized and commodified culture (yes, that does sound over-dramatic!) between doing good and profiting from that.

Ultimately, though, I think the good that these books and the general cultural awareness surrounding bullying do outweighs any commercial gains.

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