Category Archives: Moebius Syndrome

For some reason, people tend to ask the question “How has having Moebius syndrome affected your life?”…and honestly I’m always stumped.  I have no idea how I would be different, and I’m okay with that.  It’s kind of like asking if you’d been born in a different era or country or something like that.  But I am aware of the privileges I enjoyed by being born at the time and place I was born, and in a family with adequate resources and cultural capital to enable me to thrive.  I’m keenly aware that I was very fortunate in that regard, and it kind of weighs on me sometimes.  I find myself cloaking everything I say about my experiences with Moebius in all sorts of “in MY experience…” or “in MY life…” phrases because I don’t want to be presumptuous but then is that short-changing myself?  I don’t know, it’s a fine line and maybe something I’ll never quite negotiate to my satisfaction.

A series of articles have appeared in the New York Times about a 16-year-old community college student who stutters and was actually asked by a professor to stop talking in class because it was disruptive.  Now, after I wipe my jaw off the floor… I still can’t wrap my brain around this one.  As a professor, one would hope she had taken enough teaching and pedagogy classes to realize that this request was ridiculous? And that she now has the audacity to attempt to defend her position simply astounds me.  I think I would have been less surprised had she simply denied the whole thing!

I must say that I was lucky enough to never experience such discrimination in the classroom (I was almost always the person with the right answer getting called on!), and I can’t imagine having to deal with it and the media surrounding it at such a young age.  I was kind of the opposite, in fact… needing to be called on constantly to validate my entire existence in the classroom space.  I learned at a young age that the classroom was an area where I excelled, and was determined to succeed in it.

Luckily it seems like the student has moved on and hopefully the professor will be dealt with (and given a heck of a lot of sensitivity training) but I wonder how often this happens in classrooms everywhere and isn’t reported?  I know I was lucky to attend schools that offered top educational experiences and (mostly) very good, understanding teachers.  But everyone isn’t that lucky.  And that gives me pause to reflect and hope that what happened to this boy in New Jersey doesn’t happen to anyone else…

Your time is limited, so don’t waste it living someone else’s life. Don’t be trapped by dogma — which is living with the results of other people’s thinking. Don’t let the noise of others’ opinions drown out your own inner voice. And most important, have the courage to follow your heart and intuition. They somehow already know what you truly want to become. Everything else is secondary. -Steve Jobs, 2005

This quote, shared today after the world learned of Steve Jobs’s passing, really resonated for me.  As someone living with a rare disorder (or multiple rare disorders, as with me) I think you really learn to trust yourself, trust your intuition about things both physical and emotional.  I think I learned those skills early, almost by default.  I clearly remember in preschool going up to my teacher and saying “I have an ear infection”… and I did! (I think I also remember that because as a consolation for having to leave I got moved up to the “allowed to ‘read’ instead of nap group”)! 

Having courage is difficult for anyone, but I think it’s especially difficult for those of us who may look or feel different and carry the baggage from life with a medical condition.  But at the same time, I think having to be strong and deal with a lot of stuff other people do not make it easier in some ways to have courage in difficult situations and move forward.  I think it’s a truly mixed bag, but I cannot imagine having learned what I learned about life without being born with Moebius syndrome.

If this is the moment I stand here on my own
If this is my rite of passage that somehow leads me home
I might be afraid
But it’s my turn to be brave…-Brave/Idina Menzel

Bravery, or I should say the perception of bravery, is a vexed subject. I was schooled in my disability studies classes that the concept of bravery as applied to the disability community is something to be advocated against – that the assumption that just living with a disability or medical condition was enough to qualify as brave is not right. But really, who knows? As I think about it more, who am I to say what others feel? There are rhetorics around disability that make me cringe, but who am I to say how other people feel? I guess as I’ve grown up I’m becoming more confident with not being certain of things beyond what I can control within myself.

This all came to the forefront because I’m making a big change in my life, the most drastic change I’ve made as an adult. And bravery and other such rhetoric has been thrown around. Sometimes I feel brave. Sometimes I feel terrified. And that’s how I think it should be.