Things I wish I could say… but don’t / personal ramblings

I hate the fact that I censor myself.  I hate the fact that I see and hear language surrounding disability and Moebius syndrome that makes me cringe, yet am not confident or assertive enough to insert my position into the dialogue.  Who am I to say that someone else’s experiences and conceptualization of their condition or their child’s condition are “wrong” – of course they are not, the theoretical arguments I’ve read make sense to me intellectually and for me, emotionally, but they do not change individual experiences.  So I find myself shirking away from saying anything, from intruding into a community in which I do not quite know my place or my feelings… yet.  Maybe someday? Maybe not.  I’m okay with the uncertainty for now.  So I skirt around the outer perimeters, sometimes venturing in… sometimes sprinting away.

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