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I read your recent piece in NYT. Hilarious and awesome.
I have a condition called muscular dystonia. (It's unrelated to muscular dystrophy. The names have been made similar to confuse the medical establishment.) Think moderate CP with more twisting.
One thing you and I have in common is that we have been disabled from a young age. I was seven when I started showing dystonia symptoms. I'm now 47. So I (and I presume you) had no assumptions challenged or hopes dashed. As a kid I was never going to be a baseball player, and as an adult I chose a career that works within my condition. It's usually uncomfortable, sometimes painful, and often inconvenient, but I've learned patience. It's never tragic. Sometimes it's funny.
I'm fairly mobile. I got hit by a car last November while crossing the street, and I'm still walking with a cane. But I'm back riding my bike--yes, with a cane sticking out of my backpack. I bike about 40 miles a week or so. But I speak with a lot of difficulty, and my hands are twisted.
I haven't written my memoir yet. I don't know if I will. I'm not convinced it's a good use of my time. But I do have a good title: 'The Secret Source of my Awesome Sex Appeal.'
I used to do the Landmark work--the successor to Est, back in the 90s. One of the things about that work is it takes language very seriously, which as a side effect meant the people were painfully politically correct. I endured some overwrought, nauseating conversations about the right way to talk about my condition--was I disabled? Was I 'differently abled?' Gag.
At some point I said 'I prefer the term "freak." It's more ambiguous.' More recently I've identified as a Spastic American.
My husbands cousin requires an assistance dog and was actually turned away at an outdoor Atlanta restaurant. We thought about disputing it but ultimately decided we'd rather spend our money at a more understanding establishment. ~ Ashley