THE ISSUE OF STARING
So one of my Facebook friends the other day--the wonderful mother of a beautiful young lady who happens to have Moebius Syndrome--mentioned an issue that comes up occasionally for people like us.  And that is the issue of "staring"--that is, when a non-Moebius person stares at you because of your physical difference, or stares at your child because he or she has it.

In this case, someone was staring at my friend's child while they were in a public place.  And you could tell, as a mom, it hurt her.  It is no fun to see something like that being done to your child.  But maybe it would help if we looked at the issue a little bit more closely...let's "muse" on it a bit, think it through some more; maybe that can help.

I have Moebius Syndrome too, of course.  So, first of all, I can tell you:  it's no fun to have someone stare at you.  Especially when I was a kid, I can remember the occasional other child with whom I'd come in contact, who didn't know me, staring at me...and staring at me...it would seem like it would go on forever.  All I can remember is thinking that I wish he or she would quit it.  Of course, I didn't say anything.    You just kind of "take it."

When you get a bit older, it's still very much not a fun thing to be stared at.  You do, I think, know a bit more WHY it's happening.  You know you look different.  You sort of learn to look away, and wait until it ends.  But it's still not fun.

It never is.  No matter how old you get, the "staring" is annoying.  But we can also say this:  1] As you get older, you do get used to it; you become toughened and calloused towards it.  You can handle it.  Maybe this, then, will help Moebius parents:  as your Moebius child gets older, the staring probably will bother you, more than it will bother your child.  2] In fact, I don't remember staring ever, like, destroying an entire day of mine, or anything like that.  It happens.  But you get over it.  You move on with your day.  It part of that whole becoming "calloused" towards it.  3] And maybe that's because "staring" does NOT come from anybody who truly knows you, who is part of your family or who is a friend.  Having friends and family and people who understand you is important; is probably essential, to helping you get through things like that.  But as long as you have people on whom you can lean, you do get through the uncomfortable "staring" incidents.

When it all comes down to it, the real intense, uncomfortable, impolite "staring" incidents come at us usually from people who are immature, perhaps ignorant, often clueless.  And why in the end should we let those people bother us, right?  They are the ones with the problem. Not us. 


“One of the most difficult things everyone has to learn is that for your entire life you must keep fighting and adjusting if you hope to survive. No matter who you are or what your position is you must keep fighting for whatever it is you desire to achieve. ”--George  Allen (1918-1990);