Moebius Syndrome

Moebius syndrome and privilege

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.

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