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.
So things in equine-world are pretty fun right now. Piggles the Morgan has fancy glue-on shoes, and is pretty darn happy with them! I’m going to Los Angeles this weekend to get classified by the United States Paraequestrian Association/FEI to see where I classify and if this is a realistic goal. And having a lesson with their riding consultant, who also happens to be the one who has led the amazing British paradressage team for years.
I have no delusions of dressage greatness, the Paralympics or anything like that. I just want to have fun with the horses and have goals to work towards.
So in the name of working towards goals… my trainer has a new mantra for me:
Make it good-er
Yes, it’s grammatically incorrect. But the idea is this; I have a bunch of ways to do that in my riding toolbox. I can decide what to do. I can try something, see if it works, try again. I can use my experience and intellect and feel to make it good-er in a way that feels right at that moment.
There are many ways to make things good-er, and I’m cautiously approaching my non-equine life with that mindset.
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.
I’ve never done new year’s resolutions, really. Or if I’ve done them they weren’t salient enough in my memory to remember them. Guess that’s close enough to not doing them at all then.
So I’m not doing any this year. But I do have some guiding principles I’m trying to adhere to…
Work hard, play hard. Yeah, super-cliche and slightly stupid. But totally true. Work is hard and rewarding and usually fulfilling and I want to keep it that way! And figure out just where I want to aim my career aspirations and prepare myself for that with professional development and such. And then play: dogs, horses, Hamilton!SHN, NYC… more arts and theatre. And family/friends/etc.
Respect me. Sometimes I don’t. Sometimes others (I think) take me for granted. I’m ready to change that. I’m ready to demand that people take a look at what I’m doing, and give me some damn credit for it!
Stretch myself. Comfort zones are awesome, but not entirely productive. Challenge accepted.
Be artsy. Being artistic makes me happy. Need to make actual time for arts (and crafts! Or whatever crazy category dog ornaments fall into…)
There’s probably more, but as I said… I don’t really do resolutions.
I was set to post holiday photos today. Parties, elf hats, skating rinks… you name it, I’ve photographed it in the last few weeks.
But then last night, curled up in bed after a long workday with, being the librarian that I am, the NYT Book Review… I saw the above quote.
And it frustrated me.
WHY does this smart, educated man (and his family) cloak a childhood speech impairment as a joke? Was it because of the disconnect between his speech and his chosen activities? Was it because speech impairments are automatically associated with other difficulties?
Unlike Steve Johnson, I did not “grow out of” my speech impairment, and I live my life as an accomplished, professional member of society with that speech impairment.
I know the consequences. Just this week, a patron at work refused to let me help him. Because of my speech. I am underestimated in casual encounters. An amazing amount of people think speech and intellect are related.
And as long as intellectual elite like Steve Johnson and the New York Times reinforce these ideas? It will not change.
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.
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.