31 for 21: DS or Down syndrome, What’s in a name?

Names are a funny thing.  I mean, in a way, names are as common as anything can be.  Everyone has one, sometimes two or three, and there are alot of them that are used quite frequently.  Some are unique, but it seems like that takes alot of work these days…people are getting more and more creative with names.

In our family, names are a big deal.  My husband’s name, though I generally refer to him as M in writing and sometimes in person, is Muncher. Yes, that’s his name. He’ll be happy to show you his driver’s license if you don’t believe him.  I have two daughters, Nebraska Larae and Kinlee Carene.  Not the most common names ever, we’re aware.  Usually they are known as Braska and KiKi.  In blog land, I’m known as RK, and many people in my face-to-face life call me that as well.  My name is Randa (pronounced ran-duh, not ron-duh) Kay, usually used with a hyphen—Randa-Kay—because I’m not a fan of Randa by itself. (Long story, not one that the blog will be carrying.)  I have a sister I’ve called by her initials for most of her life, there are others in my family who have been known by nicknames most of their lives and have started using their given names, and there are also cases of the opposite—choosing to use a nickname over a given name.

A name is a common thing, but it can also be a sticky subject with some.  Some of us get very irritated by our name being used or pronounced wrong.  How we refer to a person often is viewed as an important consideration to that person. It might not make sense to me how someone else wants to be addressed, but it’s not so much up to me as it is to them.

Most of you are familiar with how Down syndrome got it’s name.  (Short version: The guy’s name is Down. It’s not a descriptor or a direction, in this case. FYI.)

There is alot of talk, it seems like constantly, about how people with DS are referred to.  There are lots of “don’ts” about what is *not* PC and is, therefore, deemed unacceptable to most. This is not really about that. But for the record, if you want to avoid upsetting most people, using people-first language is the key. Basically, instead of saying Braska is a Down’s child or “She is Down’s” or speaking of “Down’s patients”, the acceptable way to say it is to say that she HAS Down syndrome, etc.  It’s trying to put the person before the condition.  I appreciate the idea, and I try to keep it in mind to use in group circles, but I mess up and that’s just honest.  As I’ve stated before, it’s not something that resonates with me or upsets me, so I don’t give it a big portion of my brain. But I do try to be respectful of those who feel strongly about it, and that’s fine.

Anyway, all that said—the point here is that I’m often amused by listening to groups of people within “the community” talk when we get together or post on boards or whatever.  There are some people who ALWAYS say “Down syndrome” every single time they need to refer to it.    There are some who mix a little abbreviating with “DS” into their vocabulary, alternating the uses depending on the context, I guess.  Then there are some who practically never say the whole name, only the initials.

That’s me.

I’m all about shortening everything all the time, as far as acronyms and initials and nicknames, etc.  This is why I’m RK if you ever see anything from me in writing.  I can’t be taking time type out all those other letters! Life is short!  Ok, so maybe it’s not all about that, but it’s true that people have preferences for things, and I’m sure there are reasons.  I prefer DS, and I so rarely use the full “Down syndrome” in conversation, written or spoken.

It’s not that I’m denying what it is, as someone asked me.  Not at all.  I love having a license plate frame that alerts to our extra-chromosomal princess, I can tell anyone that I work with our local DS group or that I spend alot of time talking to new moms who are dealing with diagnoses. And when I’m in a setting where people won’t know what “DS” is, I do use the full name.  I have shirts that mention DS in it’s complete verbage, and I don’t mind at all.

But when I’m in a group who all can tell me exactly what DS, PT, ST, IEP, IFSP, AAI, NG, and so many other letters are, I don’t ever use the full name.  Just seems repetitive and unnecessary to me.  And as much as I like words—and I really do—I don’t like to use them when they’re not required in that situation.

The way that adults with DS choose to be addressed, besides their given names, is varied, I have found.  There are those who will say they are a person with Down syndrome. There are some who say they “are” Down syndrome—like, “I’m Sally and I’m Down syndrome.”  It was a common practice not long ago, and I’ve met many who prefer it still. (They’ve explained it to me as similar to “I’m a girl,” or “I’m Asian.”) We know a couple who call themselves and their peers “Downsy” or “Downies.”  I know dozens of parents who would cringe at someone calling their child this, which is understandable I suppose, but those who are old enough to make the choice for themselves opt for those names, so I don’t have any problem with that.

As I’ve mentioned before, we affectionately call Braska “our little Downsie” and we’re proud of her for it.  It is a name her dad gave her completely out of adoration—he could not be any prouder of her, all 47 chromosomes.  We never ever try to keep the fact that she has DS from anyone, either in person or otherwise.  I’m proud to say that she has DS and I’m proud of every part of her, related to DS or not.  I’m not afraid of saying  “Down syndrome” but we just use the initials almost exclusively.

What do you say?  Do you find that you have a particular habit of using the initials or the full name?  Maybe you’re into T21 or Trisomy 21 instead?  Why do you choose that particular term?  Do you have any particular name quirks or issues with your given name or nicknames??

Really. I’m curious. Do share!