So! Let’s talk disability representation and this GoogleDoodle. Like why are there animals, not people? Why do we sanitize the disability experience, making it cute (because yes horse in a curling sled is cute) instead of giving realistic drawings of, you know, the actual disabled athletes we will be seeing over the next week at the Winter Paralympics? SO much to unpack about how, regardless of what is proclaimed, disabled bodies are still minimized, still hidden in favor of cute animals.
It’s like this morning during the opening ceremony, when the International Paralympic Committee president spoke passionately about “not being defined by disability, but it being part of you” – how are you not defined by a seminal chance, thing, genetic fluke? And why is being defined by something that has every right to define you a bad thing? When we speak of things such as representation, this is what we have to unpack.
As you can see, disability sports and the representation of disabled athletes interests me greatly, as a writer and amateur disabled athlete. Such opportunity for change, and also for disability representation pitfalls.
This is a sponsored post for Self Care Catalysts. I have been compensated through the Chronic Illness Bloggers network. All opinions remain my own and I was in now way influenced by the company.
Sometimes I majorly fail at self care. I have things to do, work to do, lots of deadlines and should-do’s in both my work life and other life (which isn’t work but certainly feels like it sometimes). But I try. So, going in order with my alliterated list (because, really, alliteration makes everything better).
I love my coffee. Whether it is fancy independent roasters or your run of the mill Starbucks or something else (well, nearly, I am admittedly a coffee snob!) my coffee makes me happy. It also helps me with fatigue and I swear it helps with chronic pain – or else it just makes you so buzzed it doesn’t matter as much! My morning is made by my morning, and midmorning, coffee. I’ve learned that I have to be careful, so part of my self care is to stay away from the coffee after 1 pm if I want to sleep. Because actually being able to sleep is good!
My Canine Companions for Independence service dog is s huge contributor towards my self care! He helps me conserve my pathetically low energy by opening doors, carrying things, and picking up all sorts of stuff! These are all things I can do myself but that take a tremendous amount of effort and energy. And using that energy means that I have less physical energy for other things. And honestly, nothing sucks as much as having lots of mental energy but no physical energy. That’s a recipe for self-pity. My dog, in his role just as a dog and not as a service dog, is also paramount to my mental self care! Animals are awesome in this way. And yes, an equine is crashing the canine party because that’s also important to my self-care. The physical and mental exercise I get from riding are life-changing.
For me, a connection to others with chronic illnesses and disabilities, both my particular condition and others, is vital to my self care! It is reaffirming and sometimes life-changing. I get this connection in many ways – through the groups dedicated to my condition, from cross-disability groups, from my service dog group, and from conferences such as MedX which bring together people of many different backgrounds, both epatients and supporters, all interested in self care through education and empowerment and working together. The rush I get from the interactions I have with people who have experienced what I have is vital.
Having Said All This
Somehow this post makes it seem like I have everything in control with my self care. And… I don’t! I push myself, putting way too much on my plate – and then regret it! But self care and relying on what I outlined above are goals I’m always striving to achieve.
My name is Natalie, and I ride horses. I also have Moebius syndrome.
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.
If you have weird feet, Zappos is perhaps the best solution ever. Shoe stores can be awkward:
“Do you have anything in size 5.5? No? What is the smallest size you have? 7? No, I won’t be trying that on since it’s… too big?”
“Fits this foot, but not this foot.” <slide shoes in box, slink away before employee returns and you have to explain.
So for someone with foot issues ( in my case, I have a clubfoot so one foot is smaller and wider than the other!) making finding shoes a chore, Zappos is awesome! I’m actually happy they haven’t marked my account as returning way too much… but being able to buy a few sizes and assess or just try on a shoe I liked but they didn’t have anything small enough is wonderful!
This is what a corner of my apartment looks like right now:
And I’m really happy with finding the pair of shoes that (finally) fit!
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.
So besides the awesome Northern California get-together (70 people, 15-20ish(?) with Moebius syndrome, this post/Tweet that I put out there this morning pretty much sums up how I want to reframe advocacy, awareness and acceptance in the community.
So many people posted such well-meaning things saying they were smiling “for” their loved one with Moebius. I have a slightly adverse reaction to this… I want to be a participant in this. I don’t want things done for me. So… do this with us. Smile with us, especially when our smiles are different. Embrace that difference; collaborate on things that will highlight the uniqueness of everyone and most importantly…that there are many ways to express yourself
for more information on Moebius syndrome, check out moebiussyndrome.org.
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
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.
Fittingly, I will be spending part of this 25th Anniversary of the Americans with Disabilities Act at work.
It is a good reminder for me to step back from obsessing over career trajectories and picking up more shifts and so on to think about the fact that it is in part because of the disability rights movement that I am working in the first place – that I was able to attain the education that enabled me to get this job in the first place, that such things as “reasonable accommodations” in the workplace even exist.
I don’t work in the disability field, and that is partially thanks to the ADA. Even in the mid-2000s, the operating assumption was that I would choose that path. The ADA showed that people with disabilities can and do work in every sector, in every environment. That is part of the impact of the ADA.
So that is how I will celebrate, in the mundane rhythm of work and life. As everyone should be able to.
We talk a lot about expectations in the disability community – about how they are too low for people with disabilities, about how children with disabilities are unchallenged and under-estimated, about how we need to set higher expectations for everyone.
But sometimes, we underestimate ourselves. Today was one of those days for me. I was convinced my horseback riding lesson was going to be ‘meh’. I was a bit dizzy and tired and was worried I was a bit out of shape since I didn’t ride last week.
That was not the case. For the first time in awhile, I had both strength and timing to keep Piggles (yes, I ride a horse named Pig) straight, forward, and (sort of) light on the bit. We had great balanced transitions and light halts.
Everything just came together. Now there were many factors for this (barre class on Friday? lots of walks? who knows!) but it this reminds me to continue to set both realistic and high expectations for myself.
Sometimes I need that reminder, and this great ride when I didn’t think there would be is a good push in that direction.
If by ‘loser,’ you’re referring to a man who’s greeted eight times a week by 1,000 people that stand as one, applauding until their hands are raw, cheering until their voices are spent, whispering, ‘He’s so much better looking in person,’ and laughing until their faces are contorted in an anguished mask that can best be described as a sort of Bell’s palsy.” – Larry David, presenting at the 2015 Tony Awards
Sigh. It happened again last night, that fine fine line between humor and being an asshole making jokes about people with serious medical conditions.
I have a sense of humor, sometimes a black sense of humor. I’m not immune to making fun of myself or my situation… but in no way is talking in terms of “anguished masks” funny or frankly acceptable.
But people laughed. And because people laughed, the roughly six million people watching at home think it’s okay. And it’s not.
Selfishly I am annoyed because theater is my happy escapist place (even if my favorite playwrights and lyricists write about heavy stuff) and I don’t like real life crap like this to intrude.
We’re slowly getting there with being less accepting of this kind of stuff, but it’s not happening fast enough… especially when it hits too close to home.
(and yes: title is an Avenue Q reference, proving that I do have a sense of humor!)