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.

ADA25

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. 

Expectations

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. 

    
 

A fine fine line in humor

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!)

Childhood “Favorites”: Medical Edition

 My parents are cleaning out the attic of their house, and I got an e-mail with this blast-from-the past: Mister Rogers medical books!

 

I still remember these books well. And that’s kind of sad. I think I took “working through past medical procedures” a bit too intently… we also found my favorite doctor’s kit. I donated a bunch of toys and dolls and books, but these I’m keeping.

I’m keeping them as much for what they represent than for anything else. These books represent my experiences growing up with doctors and hospitals and operations and casts and appointments followed by yet more appointments. They represent me trying to make sense of that reality, and the resources that were available to me do that. They represent the efforts of those around me to prepare and educate me about these experiences (apparently not only did I go on a “surgery tour” at the age of three, I actually asked questions of whoever was leading it. Precocious much?)

Certainly education about the impact of early childhood medical intervention has improved, and I’m sure there are more sophisticated preparation materials available to children and their parents now – but finding these books makes me grateful that at least something was available during my childhood.

This series was certainly well-read and well-loved.

SufferIng

In case you ever need to know, the sure-fire way to seriously piss me off is to tell me that I am suffering from Moebius syndrome.

The people of Nepal are suffering. People and families who are going hungry or experiencing great trauma are suffering.

I am living, not suffering.

Yeah, it sounds like I’m just being really picky… but for me, and for many others living with chronic conditions of all kinds, that distinction defines so much. It defines how you approach me, how you approach the fact that I happen to have a rare medical condition.

If (the general) you approach my having Moebius syndrome as suffering, I immediately feel on guard. On guard for what, I’m not sure – pity? condescenting-ness? mid-understandings?

Perhaps I need to work on seeing the other side of things and think in terms of educational opportunities and different life experiences and such… but I don’t always have the energy for that.

I’m too busy living with Moebius syndrome. 

 

Having grace

grace
ɡrās/
noun
1.
simple elegance or refinement of movement.

2.
(in Christian belief) the free and unmerited favor of God, as manifested in the salvation of sinners and the bestowal of blessings.

verb

1.

do honor or credit to (someone or something) by one’s presence.

Thinking about grace today – not only about a girl named Grace who passed away far to soon, but about having and behaving with grace in my everyday life.

I want to say that I behave with grace in my life. I aspire to that. I try. But sometimes it is difficult. Emotions get in the way, passions collide. Self-preservation takes over. Grace is forgotten in the chaos of everyday life.

This shouldn’t be the case, and I am determined to find the grace I know is everywhere – savoring the happy face of my dog at the end of our walk, spending time with my family, looking at awe at the one thousand pound horse who lets me mount him. The magic of witnessing passionate performers giving their performance of a lifetime.

These are my moments of grace. Everyone’s moments are different, but they are everywhere. My mission is to pay attention to and absorb these moments, and to channel that energy in the moments where I feel lost or disillusioned. I will try. It will happen sometimes and undoubtedly will fail at others. But trying is truly living with grace.








Rare Disease Day 2015



Saturday February 28 is World Rare Disease Day. I’m always happy to support this effort – the numbers are staggering, if you think about it: one in ten people are affected by a rare disorder (if you like infographics, Global Genes Project has a few illuminating ones related to rare disorders).

Although all 7,000+ rare disorders are obviously different, the experience of living with these conditions share many commonalities – the search for a diagnosis and knowledgeable physicians, the search for information and community, and the powerful connections you get with shared experiences.

It’s important to channel the National Organization for Rare Disorders motto – “Alone we are rare. Together we are strong” because it is true – the collective power of this community is truly powerful.

Because I have a t-shirt purchasing problem (and because I really love the sentiment and meaning of this shirt), I just had to get this one from Global Genes… I truly do know and love so many people in the rare disorders community. And I try to love myself, as much as my perfectionist self can! Maybe wearing this will have it rub off a bit…

Disability in the ALA Youth Media Awards: Separate and Equal

Of course I was excited last week when the Schneider Family Book Awards which “honor an author or illustrator for a book that embodies an artistic expression of the disability experience for child and adolescent audiences” were announced at ALA Midwinter.

I’ve only read the middle-grade winner – Rain Reign by Ann M Martin (Babysitter’s Club author, in case you lived under a rock or had no elementary-school aged children in the 90s), but thought the story of a girl with autism learning to love and let go when she encounters a lost dog was wonderful. I’ve requested and ordered the other two for my library system.

What really made me (literally) squee, however, was that Cece Bell’s El Deafo was a Newberry Honor book. This funny and touching graphic novel explores what it is like to grow up wearing hearing aids and attending a mainstream school. I am so, so happy for this book that it was recognized.

I am especially happy, however, that it was recognized separate from the Schneider category – because while it is important to recognize marginalized groups and create recognition for works exploring them, the ultimate goal is to de-marginalize them and not have to limit “disability literature” to one category. It is great that the nominating committee saw fit to see beyond genre boundaries and pre-conceptions in this case.

I highly recommend reading through these books and the others that have won in past years.

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Pile O’Awareness, and of History

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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.