People First Language...and Yoda

Within the Down syndrome community, and indeed in most communities that support people with disabilities, a form of speech has emerged called "People First Language." People First Language replaces terms such as Down syndrome person, deaf person, disabled person, etc. with person with Down syndrome, person who is deaf, person who is disabled. Proponents are often quite emphatic that we must emphasis the person, the individual, over the disability. The disability is a part of the person but not the whole person.

Interestingly enough, many of these groups (collectively, or their members individually) have rejected the People First Language because they feel it actually devalues their disability and suggests that somehow they are distinct from their disability when they would actually prefer to be known as deaf, disabled, etc. The article I linked above has a short but readable discussion of those issues.

I have many friends who are adamant about People First Language; I know they have reached their opinion based on much thought and consideration of the issues. This post is not intended as an argumentative piece but rather an explanation of the way we do things in my little corner of the world.

Obviously, you can see from my title where I'm going with this; I have the subtlety of a freight train! Like a freight train coming from over a mountain, though, you might not realize exactly how I got to this point.

We have a large family, have for many years, in fact. Like most large families, we tend to have ways we group our children when we are speaking of them. If I am taking Alex and Luke on a lunch date, I will always say I'm taking the boys. If I were taking Alex, Luke, Song, and Anna somewhere I would say I'm taking the big kids. These days we also have the little kids.

Back when we first adopted Vera, my husband started a new group: The Downsey Twins. Does anyone remember The Bobbsey Twins? I believe that's where he got the idea. I thought it was clever and the name stuck.

Later, of course, we added Ella to the mix. The Downsey Twins no longer worked and The Downsey Triplets just wasn't catchy. Soon enough, we shortened it to the Downsies. Or The Downseys. I don't know. We don't spell it; we just say it (to each other, not to them).

At some point, I heard about this People First Language thing. I have to admit, I was momentarily taken aback. Could I, a person who loved her girls to distraction, have been insensitive? Was I single-handedly slowing down the forward momentum of the Down syndrome awareness movement?

In a word: NO. Now, I realize that to many, many, many advocates the word is "yes" but I believe I can make a convincing case for my lack of political correctness.

First of all, let's think about exactly what constitutes a person with Down syndrome. They have an extra 21st chromosome and unless they are one of the rare people with Ds who have mosaic Ds then they have that extra chromosome in every cell of their body. Every.single.cell. In the same way, if you are a girl then every single cell in your body has XX as the 23rd chromosome, whereas a boy would have all XY.

Recently, Anna asked me if I would 'remove' the Down syndrome from her sisters if it were possible. My answer was "Absolutely not!" I explained to Anna that if the extra 21st chromosome were removed from every cell then they would not be the same people. That extra chromosome does, in fact, make them who they are. If you were to remove your 2nd chromosome (and replace it with a different one, as you can't live without your 2nd chromosome) then you would be a very different person. That's just how it works. You can see that clearly in your biological children. They each have a different combination of genes from both parents and they can be so incredibly different in looks, in personality, in coloring, etc. Genes are tiny parts of a chromosome, so if we tinker with an entire chromosome then you can see the difference would be even greater.

All that verbiage to say: I don't feel badly for referring to my girls as the Downsies because that is a very important part of who they are, just as being a girl is a huge part of who they are. I don't call Ella "a person who is a girl" nor Luke "a person who is a boy." While boyness/girlness/Down syndromeness isn't the only part of the person, it is an important piece of information.

Second, I adore my girls. Downsies is an adjective that equals beautiful, fun, wonderful, fantastic and desirable to me. When we refer to them as girls with Down syndrome it really sounds like we are trying to distance ourselves from the "scourge" that is Down syndrome. I don't want distance--I want to embrace that part of them because I love it! I've read blogs that talk about hating their child's Down syndrome and I must admit that I really don't get it. I can get just as frustrated with their delays in learning, their stubbornness, their (fill in the blank with whatever bugs me that day) as the next person. I can get just as frustrated with my typical kids. I don't blame it on the chromosome anymore than I blame another child's laziness on their gender.

The third part of my reluctance to embrace People First Language has to do with the way humans interpret language as a gestalt. If you truly believe that the two phrases:

“Jill has three daughters with Down syndrome”

“Jill has three Down syndrome daughters”

are understood in a significantly different way by the language processing centers of the brain, you haven’t studied much transformational grammar…or ever watched Yoda.

“At an end your rule is, and not short enough it was!”

Our brains are fully capable of taking the information offered, even in a strange order, and assigning proper meaning to the statement. The key, in my opinion, is to work on giving “Down syndrome” a fuller, more complete and complex, less pejorative meaning so that when it is said in relation to our children there will be no need to distance the child from the word.

Fourth, I respect the people first language and use it in writing and in referring to other people's children who may be disabled, but that doesn't mean I have to use it on my kids in day-to-day life. Really, that's the crux of my post today. How we refer to our own kids is our own business (despite my having made it public business today!). Even if you don't like what we call them (again, not to them…I call them by name), please take the time to understand why we do. It isn't out of disrespect, it may be a bit out of laziness, and it is assuredly out of our great love for the myriad ineffable qualities that 23rd chromosome has brought to our girls.

The years of collectively calling Vera, Emma and Ella the Downsie girls have not blinded us (nor the very few people who have actually heard it spoken) to the depth and breadth of their differences, their individual personalities. In fact, even relatively short-term readers of my blog could scarcely fail to recognize our celebration of Vera's, um, rather unique qualities, Emma's girly-twirly, prissy personality, and Ella's stunning beauty. I spend a fair amount of time in my life reflecting on the 5 girls and 3 boys living under my roof, how 8 people could be so different in looks, personalities, abilities and temperaments and still meld into a family...a true family. And at the end of the day that’s the only thing that really matters.

hitting publish with great trepidation...