PEOPLE BEING, WELL, AMBIVALENT (to say the least)
So a FB friend of mine who has Moebius Syndrome today raised a really good question: have others of us with Moebius Syndrome noticed that, in public places and elsewhere, "normal" people (and of course especially children) will be reluctant to come sit near us, will stare in rather obvious ways, etc. She told the story of one woman who stared at her for a full minute in a coffee shop before departing. So my friend wondered: does this happen to the rest of us?
Well, and of course it absolutely does. But let's break this down a little bit, because this can happen in different ways. First, of course, there's the very obvious. open staring. Younger children can be especially guilty of this; but sometimes adults do it too. I really think this kind of thing can come from several different factors. Young children of course just don't know any better. When it comes to adults, though...I think: 1] some lead very sheltered lives. They just can't believe or understand how there can be those with physical differences out there. (Maybe I'm being kind in suggesting such folks have been "sheltered"; maybe some of them are just ignorant.) Other adults are very obsessed with appearances and how they look; they are desperate to be accepted by others, to fit in. Therefore those with physical differences make them very uncomfortable. Their world isn't, and/or may not always be, the way they'd like it to be; they can't deal.
But you know, this ambivalence doesn't always express itself in such obvious ways, like staring and other ways of shunning. Sometimes it manifests itself in more hidden, subtle ways. I know both my wife and I have noticed this. For example: maybe you're at a party, or a gathering, or a function, or somehow out in public. Maybe you're around people who are not your friends, exactly, but they're people who know you, be it from your job, your nieghborhood, their kids go to school with your kids, etc. But maybe some of you with Moebius have noticed: even at such gatherings--hey, you're not a stranger, you're not a man from the moon; yes, you have Moebius, but everyone there has seen you before and should be familiar with it--people often don't take the initiative and talk to you. They often don't approach you on their own. They'll talk to you if you are the one approaching them; but otherwise, no.
In other words, seems like, sometimes, even when you're not among strangers, if you have Moebius, you're still the stranger. Cuz hey, for some people, we still look different, and our speech is still a little different, and that's something they have a hard time getting past.
Thank goodness our friends don't have a hard time with that; so hold your friends and all those who've accepted you real close; I guess that's the moral of the story. Am I on to something here? Do I exaggerate? What do others of you think? Share! :+)
Good thoughts ... While I have long ago engaged with elementary age kids to sense they look, I wave, say Hi, etc., they're usually 'done'... I sense that for some adults, they are taken somewhat aback if we have "voice". I've seen this ... where I will be one of 4 in a conversation, and one will be looking consistently at the other two when talking and I am sort of 'there' but not. ... It happened the other day... It doesn't happen often, but when it does, it is disconcerting.
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