Sunday, October 4, 2009

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!


  1. Well, I don't have any names to share, but I just wanted to say that I have always appreciated your perspective on this. Knowing that you look at the intent of what is being said rather than whether or not the person knows the PC way to say things. It just adds more to the fact that Braska is Your little Downsie,and it is nothing be afraid of or tiptoe around. You've bridged the gap for the people who mean well, but don't know the right way to say what they mean.

  2. I prefer to shorten things, whenever possible. A girl with blond hair and blue eyes who is tall and slim will be "a tall, slim, blue-eyed, blond-haired girl" -- 8 words instead of 13. Therefore, a child who has Down syndrome is a DS child. To me, an adjective is easier than an object of a preposition any day, and no less respectful :o)

  3. Well in our house we use nick names. My name as you know is Jessica but I prefer Jessi as I don't feel like I am in trouble:) At daycare Evan gets called EvanRude, not that he is rude but because there is a boat motor named Evanrud. My husband goes by his middle name because his dad and grandpa have the same first name. I have always like the names you chose for your girls and Muncher is a hoot and a half. As far as Downsies, I think it is affectionate (sp)name and I and everyone know you love your extra XY girl.. I prefer short and sweet:) Unlike my post:)

  4. I, too, am a use of the term "downsie"...usually in a high, squealing and excited pitch. i.e. "LC, today is baby class! Yahoo! We get to see our Downsie buddies!!"

    I agree with's the spirit in which the name is delivered. I think the official "has Down Syndrome" title can be delivered in a way that's cruel and just depends on the nature behind it.

    It is interesting to experience the different expectations and preferences of other parents, though...

    (But I'm delighted to squeal about our sweet downsie buddy, Braska, on a daily basis...)

  5. Hmmm.. What do I say? You might know better than me! (Since you have to listen and I just yap away!)

  6. DS, (sometimes Ds in written form) or Down syndrome. Depends on the context.

  7. Interesting topic! I use a combination of all 4 terms - Ds, spelled out, T21, and spelled out - just depends on the situation and who I'm talking to. Mostly in my blog I might start with spelling it out so maybe if there is a new reader, will know that I'm referring to Down syndrome instead of Dear Son LOL I don't use T21 or Trisomy 21 as often because in general people wouldn't know what I was talking about.

    Kayla was about 1 or 2 I think, the first time I heard the term "Downy" or "Downies" - up till that point I had never heard that term used before. Joe and I were at the bowling alley on base where we were meeting for volunteering for a Special Olympics bowling. I was speaking with a mom who has a teen daughter with Ds and I think I asked how many were on the group or something, that had Ds. She turned to the other lady with her and said "So-and-so, how many Downies do we have on the team?" and I think my chin about hit the floor LOL It just came as such a shock to me since I'd never heard anyone w/Ds referred to that way and couldn't believe this mom would use it :) It was obviously said with much affection and was frequently used with them, so no harm done. I've since come to realize everyone has different terms of affection and what offends one doesn't offend another :) I do wonder how that nickname started though.

  8. Hi RK, I'll have to come back and read this post sometime (am currently late putting out the trash and leaving for work) but I just wanted to say hello. I haven't been on the nlog in quite a while (mom passed away) but I think of you a lot. Hope things are well for you! I have no idea how to email you, so this will have to do.

  9. Very interesting topic. Personally, I try to be careful with the people first language stuff in my writing, but less so in casual conversation. It gets a bit clunky always saying "children with Down syndrome" when talking. I think the irritations come when people make generalization like "Down's kids always....(are happy, are stubborn, need orthotics etc.)"

  10. I'm a relatively new parent to a child with DS (she's 2 but adopted so she's only been with us for about 3 months now)so I'm still learning how to talk about it and deciding what terms I want to use. I find that when writing, DS is easiest unless the person I'm writing to wouldn't know what it means. I do try very hard to say "a child with DS" rather than "a DS child" because I know a lot of people are sensitive about that. Personally, it doesn't really bother me. You either get how special DS is or you don't - and I'll know that when I talk to you regardless of the terms you use!

    I do affectionately call my daughter "My little Downsie-girl". For a while I was worried that it would offend some people but now I've started to see that many families have a similar nickname and we all understand that it's a loving term.


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