Things that bother me. Things that don’t.

When you start out in a marginalized group, I think it is a lot easier to sort out your feelings about what appropriate language is, or isn’t, when it comes to being part of that group. I grew up with people (adults included) making comments that I must be good at math because I’m Oriental. You kids are always so good, you never get in trouble like the others. What do you speak in Korea, Japanese or Chinese? No joke.

Now I am a parent of a child who is in a marginalized group, and I am having a hard time sitting some if it out. LP will grow up and have many people take one look at his face, and they will write him off. Many will try to be kind to him because they know they are “supposed to”, but they won’t really see past the Down Syndrome.

With that in mind I’ve pondered this whole People-first Language. If you haven’t come across this, it is the idea that it is important to put the person before the condition.  So I say I have a “child with Down Syndrome”, not a “Down’s kid”. This makes sense, right? It does bother me when I hear the term “Down’s babies”. It makes me feel like LP is no longer a bundle if hope and potential, just an unfortunate diagnosis. The other day when I was talking to the audiologist about LP and she referred to “those kids”. I tried to be mad at her, but in all other ways she was a sensitive, informative professional. At the end of the appointment she reached out and touched LP’s fuzzy head with a genuine, tender smile.

So what’s in a word? I’m a little torn. People can ask, “Are you Korean?”, but it doesn’t sound at all right to ask, “Are you Down’s?” I read one example that people are not “cancerous”, but that they “have cancer”. Right. But cancer is indisputably bad. No one wants cancer. Is that the same with Down Syndrome? I would hazard a guess that for most who have not been touched by disability or Down Syndrome in some way, yes, it is the same. Indisputably bad. For anyone closer, it is not bad, just complicated. But being Korean is not indisputably bad, and is that why you can be it? Maybe you can’t have it both ways.

I saw our midwife yesterday and we talked about this preferred language. She said, yes, she absolutely understood the idea of People-first Language, but wasn’t having Down Syndrome a state of being, as well? It is, after all, a genetic existence. There lies the dichotomy that all minority groups face, right? There’s a need to embrace a particular defining characteristic, fighting with the need to resist letting others define you solely with that same characteristic.

I have two things to say, then. First, yes, it is a genetic existence. However, the only reason we can draw the lines to create the label of “Down Syndrome” is because of genetic testing. Instead of making clearer definitions, genetic testing reveals a vast continuum of what we call Down Syndrome. It can be random or inheritable. There is some evidence that some generic traits may predispose a person to having a child with DS. People who are carriers for the genetic translocation that may result in a child having Down Syndrome may never know until they actually have that child. There is a rarer form of Mosaic Down Syndrome that results in some cells of a person’s body having the extra chromosome, whole some cells do not. The proportion can be anything from 1% to 99% of the body’s cells, and the numbers may actually change over time. A person can also have the trisomy (three copies of a gene instead of the usual two) only in their reproductive cells. It is thought that there are people walking around with Down Syndrome or as carriers of it, and they have no idea. So yes, it is a genetic existence, but an existence on a continuum, and an existence of one extra chromosome. What about the other 22 pairs? They are probably regular ‘ol pairs, no one says a thing about them.  So yes, LP has  slightly different genetic existence.  But there is no way to draw that line.  We are all on a long continuum of whatever the genetic lottery gives us.  Should we be defined by our genes?

My second thought is that it is reasonable for a minority group to regain and retain some control over their own labeling  I go back to the idea of race and nationality. If your ancestors come from a border area between today’s Korea and Russia, what do I call myself? Similarly, how will the taters choose to define their preferred label of race and identity? They should get to choose.

I have landed at this: Language necessitates lines be drawn, and those lines matter. Meaning begins and ends, overlaps, and merges because of the definition created with words. Not ideal, but we gotta draw the line somewhere.  People-first Language attempts to regain control, value, and respect that has previously not been given. Yes, it is a little arbitrary and yes, good people say the “wrong” thing. It shouldn’t change the need to strive to make your words reveal a culture that values personhood over all else, right? Right.

That leads me to say… I’m bothered by “Down’s kids/babies/people”.  I’m bothered by my baby “being Down’s”.  It gives me a pit in my stomach, thinking of the uphill battle we will have to fight for him to be seen as anything but his diagnosis.  I don’t like talking about how kind/nice/wonderful all people with Down Syndrome are.  Clearly there is something to the stereotype, as there always is, but I’d hazard a guess that it is a complicated picture.  I’ve been gotten the “model minority” compliment all my life, and it doesn’t feel good, no matter what, no matter what context.  For LP, it makes me wonder, well, what about any other people with disabilities, are they less desirable  because they aren’t “easy”?  Of course that isn’t how anyone intends it, but the broader implication is there.

What doesn’t bother me?  I’m not really upset about shortening the diagnosis to “Down’s”, but I’m not in the majority there.  I get that trying to use the right language results in a mouthful; I’ve found it challenging myself.  I also don’t care about asking about the syndrome itself.  Ask as many questions as you want.  Seriously.  I’m all about discussing what I know, and musing about the future.  The extra chromosome is there, we might as well talk about it.  Why does his face look different?  Kind of a mystery, there are a couple of theories.  What is a palmar’s crease?  I’ll tell you.  It also doesn’t bother me at all to hear how cute LP is.  Not at all.

Ok, I feel better.  Really needed to get that off my chest.  Carry on, world.

p.s. Friends and family, if you are now gripped with social paranoia, I’m sorry, it is all good. I’m over it, let’s not speak of it again.  Having said that, I am a person who is newly trying to deal with her son’s Down Syndrome diagnosis, so I am a bit emotional about it all.  If you keep saying that stuff, I might get miffed eventually.  Just sayin’.  xo

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3 Comments on “Things that bother me. Things that don’t.”

  1. AK says:

    I’ve always been a “polio kid.” Most of us are in our sixties and seventies, and still use that label to describe ourselves. We live with varying degrees of symptoms that don’t go away. To me, your little guy will always be him, not his condition. And maybe people will see him as they saw you, one of those perfect Asian kids.

    • ji says:

      AK, do you think that the phrase “polio kid” was ok in part because there wasn’t the same social stigma and misinformation attached to it as there is to DS? Or maybe you think there was? Let’s discuss next time we are together. xoxo

  2. Lisa says:

    Wonderful, thoughtful post.


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