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I don't often talk about my disability.
I still have a hard time getting that word past my lips. It feels like appropriating struggles through which I've rarely had to view my own life.
But I was born with spina bifida. I wrote about it only once (in 2014).
I still have a hard time getting that word past my lips. It feels like appropriating struggles through which I've rarely had to view my own life.
But I was born with spina bifida. I wrote about it only once (in 2014).
In the years since I wrote this little reflection, I've come to understand some things that - as I'm laid up today, barely able to walk - have been echoing through my mind.
The first is that my condition isn't a "curse" or a "price." It's who I am. It has shaped who I am.
The first is that my condition isn't a "curse" or a "price." It's who I am. It has shaped who I am.
Do I wish I lived without the pain and the certainty that as I get older, my bipedal mobility will decrease? Of course.
Am I to some degree thankful for the ways that spina bifida has allowed me to see myself and the world around me with extended empathy? Absolutely.
Am I to some degree thankful for the ways that spina bifida has allowed me to see myself and the world around me with extended empathy? Absolutely.
The second thing I've learned since 2014 is that I'm not alone. I've met incredible folks who live w/ disability and use it to create space for others and tell stories. I've learned that it's a spectrum and one I'm allowed to embrace.
I guess I've learned a little pride.
I guess I've learned a little pride.
The third thing, and this is the real reason I wanted to write this thread, is I've learned how much the media I consumed as a kid reflected back to my young mind a Tragic Context for disability.
Especially in the worlds that shaped my imagination: Star Trek and Star Wars.
Especially in the worlds that shaped my imagination: Star Trek and Star Wars.
The only disability I saw growing up that didn't result in the character being written out of the narrative was one that could be "overcome" with a prosthesis.
Luke's robot hand. Geordi's visor.
They remained in the narrative only because they could neutralize their disability.
Luke's robot hand. Geordi's visor.
They remained in the narrative only because they could neutralize their disability.
