Sunday, March 1, 2009

bloke

We were checking out at Wal-Mart lastnight, and the checker was a young man, probably mid-20s, complaining about being at work on a Saturday night.  I was making small talk, commiserating, telling him I'd rather be anywhere but there on a Saturday night, as well.  As I went to swipe my card, I noticed a plastic bag over the machine.  I said, "Is this broken?"  He said, "We prefer to use the term 'special.'"  I was kind of taken aback, thinking, doesn't he see Mason right beside me?  I mean, I know I have his bib off, but I think it's pretty apparent he's a special needs kiddo.  I thought a minute, and said, "Does calling it that make it any less broken?"  He looked at me kind of funny and said, "I suppose not."  

The experience got me to thinking about terminology.  Calling Mason special needs versus handicapped versus broken versus messed up versus disabled versus our little angel with biparietal polymicrogyria doesn't really change a thing.  He's still broken, no matter how you slice it.  You can put fancy designer names over whatever the hell is wrong with him, but it's still the basic truth that his brain is messed up and always will be.  I think it takes families that are in it to see the utter absurdity of being pissed off over someone using the wrong name.  Although I do dislike the word retarded, it's not because I disagree with the textbook definition of the word retarded, just the negative connotations that have come to be associated with the word.  But, if someone were to refer to Mason as retarded, (in a clinical or education setting, not just someone yelling, "Hey, retard!" from across the parking lot) I would have to agree.  

I'll admit I used to think positively of the word "special."  Now, all I can think of is special needs, so it takes on a whole other flavor.  I do hate the way special needs implies things are all rosy and perfect and these kids just need a different approach.  Ahh, as if it were that easy.  I think it can be, for mildly affected kids.  Maybe a different approach to test administration, a minor environmental adjustment, and they're good to go.  Not in our world, though.  I sure wouldn't refer to Mason's brain damage as "special" in any way.  I love the way Robert Rummel-Hudson refers to his daughter's polymicrogyria as a "monster."  Exactly.  That is coming from a family living with, dealing with, and trying to tame the monster on a daily basis.  That's a lot closer to describing my son's brain damage than any terminology involving the word "special."

I think there's an absolute difference between meaning and terminology.  My nephew used to say, "I bloke it" when he broke something.  He knew what he meant, and so did his mom and dad, so even though the meaning was there, the terminology wasn't exactly right.  Mason's speech therapist said she wouldn't give him applesauce the other day at lunch because he wasn't requesting it; he kept pushing "apple juice" instead.  Finally, she checked his device and found that, lo and behold, applesauce wasn't on his device!  She said she was impressed that he was able to substitute the closest thing he could find to request what he wanted.  I have often paused when people ask what is up with Mas, always struggling to find the terminology that felt the best on the tongue....disabled?  Handicapped?  Special needs?  I just prefer to call him Mason, and go the medical route when people ask, such as...."He is 11 years old and has biparietal polymicrogyria.  He is mentally stuck at around 3 years of age.  He is undiagnosed but has developmental delays.  We don't know how it happened or whether it is genetic.  We have no idea what his future holds."  People, of course, cannot stand this description....they have boxes to check and forms to fill out and this does not do.  It just does not do!  But, there it is.  That is what he has.

The whole politically correct terminology never did fly with me.  We are what we are, regardless of the moniker you attach to it.  I'm still not sure if the checker was messing with me, kidding around, or didn't see Mas, or what the deal was, but he did get me thinking on what terms we use to describe things.  And while people can get caught up in demanding that those around them use the "right words", we have bigger fish to fry in this house.  Call it what you will; it's here, and it's not going anywhere.  

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