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31 for 21: Education without alienation [Down syndrome, person first language]

Posted Oct 28 2010 9:29pm

I have had the privilege of getting to know some super nifty blogger buddies “in real life” (IRL if you’re a fan of the acronyms, which I am) versus just communicating through blogs and comments shared.  I could list a whole bunch of them, but for today’s purposes, I’ll highlight one of my faves.

Most of you are very familiar with Courtney, Justin, LC, and Jace and their ever-entertaining stories written in the dry, witty style that Courtney employs with ease. (And for what it’s worth, it’s not a show for the blog. That’s how she talks. It’s great.)

I’ve been blessed to be able to get to know them better since they come over here to St. Louis Children’s for a chunk of specialists for the squibs.  We’ve done dinners out, visits at our house, and I’ve been able to provide some tiny distraction from the fun of hospital stays when they’ve been here for a few days at a time.  Trust me, I am always the one who walks away more excited and blessed by the interaction. 

I’m still a tad starstruck, I admit it.  These two and their tots are really just a tad more snappy than most people, and the niceness is icing on the cake.

Anyway, this isn’t supposed to be all about my gushing affection for “ch” and her gang.  It’s about a conversation that we had last time I visited in the hospital, last month.  Most of the conversation was of a personal nature, and as usual, Courtney offered superb perspective and some good food for thought.  But the other part of the conversation was about a topic we all discuss occasionally, it seems.

When do we correct people for referring to  our “Down’s babies” or “Down syndrome kids”?  Or do we? 

There’s lots of talk about person-first language, and I’m good with that.  (I blogged a bit about it here .)I’m not opposed to speaking in a respectful manner, of course, but sometimes pushing the point can alienate those who are just trying to interact with us or our kids.  And alienating them does NOT provide opportunities for education about why you might feel it’s important to phrase things a certain way.

Courtney has done a great blog post that encompasses much of what we discussed that evening at the hospital.  She had great things to say then, and she’s sharing them here .  (Because I know a few of you read with your school-age kids, there is one PG-13 word used in a reference example. But don’t skip the article for that. It’s very worth the easy mini-edit.)

My favorite section is this…

And, in stopping you and correcting you I've established that you have to tiptoe in your references to my children.  I've implied that speaking of my children requires delicacy and careful treading.  I've implied that my children are different than most children you could easily and naturally speak about.

The bottom line is this for me…I’m not going to demand that strangers get educated and know the current PC way to say things JUST to interact with me or my children.  I am happy to be part of that education, but it takes a warm response and welcoming attitude to allow that to happen.   And as for caregivers and medical people, yes, they should know what’s considered “acceptable” but I’m still not going to pull an attitude that MY kid has to be treated with special (ahem) care in how you just talk about them in regular conversation.  If the opportunity to educate in a nice manner presents itself, then sure, I share the info with them.  But I am not going to walk around with what amounts to a chip on my shoulder just waiting for someone to have the gall to speak to or about my child and use their words in the wrong order.

As Courtney says , it’s gray and sticky territory.  I will probably always be in the minority on this in the DS community. (OR is it “community of those who have or love someone with Down syndrome.” Seriously?)  That’s ok with me. I’m fine with being on the fringe.

I just really feel like we have to watch our interactions with people and make sure that the education is happening WITHOUT the alienation taking place first and voiding the educating possibilities.

The grouchy kid.
The sick kid.
The pretty girl.
The rowdy boy.
The silly girl.
The hyper child.
The smart kid.
The happy baby.
The colicky baby.
The picky eater.
The whiny kid.
The helpful child.
The birthday girl.
The football guys.
The ballet girls.

It’s a natural part of our language to have the descriptor in front of the noun.  It doesn’t mean that what we have used to describe them is the ONLY element of their being. It’s just what pertains at that moment. I don’t think it’s fair to expect people who do not have the perspective we do to *just know* that in our particular situation it’s “not ok” to use the order they are used to.

Yes, it’s ok to educate, just don’t alienate and further isolate our community in doing so.

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