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.
