What People-First Language Can Miss About Down Syndrome

As the mother of a daughter with Down syndrome, a comment made recently by a new father caught my ear. He insisted his son was “not a ‘Down’s baby’ but a baby with Down syndrome.” What’s more, he maintained, the term “Down’s baby” was incorrect and carried the connotation that his son was somehow less than “normal” people.

Right there with ya, buddy!

Or… at least I was when my daughter Kolleen was a baby. Long before blogs existed, I wrote in a journal my philosophy, that “Kolleen should not be treated as a Down syndrome child but as a child with Down syndrome.” Thirty years ago, it was important – critical – to me that the world see her first, and her Down syndrome second, rather than the other way around. I embraced that I would spend my life standing between her vulnerability and a challenging, potentially unkind world. I was ready.

But now, something about that father’s comment, that this distinction between saying “Down’s baby” and “a baby with Down syndrome” was the difference between right and wrong, bothered me. Wait – what? I had written almost the same words when Kolleen was a baby. Why wasn’t I feeling all “rah, rah” about his statement? Why did this idea no longer fit comfortably? Guilt began whispering hello from the periphery. Had I become complacent, abandoned my post? Had I let my daughter down?

I finally realized why the distinction no longer resonated with me. In fact, I had an epiphany, one of those glowing moments when a new idea springs, fully formed and comprehended, into your soul, and you feel downright wise.

Yes, I had been ready to be her champion, but I realized my starting premise was faulty. By saying, don’t consider her Down syndrome first, I was actually saying, don’t look at what’s wrong first, look at what’s right. Don’t look at what’s wrong. I was asking the world to look beyond what was automatically assumed a negative. Down syndrome was a check in the minus column. Even today, the preferred terminology of People-First Language states, “a disability descriptor is simply a medical diagnosis,” and we should “respectfully put the person before the disability.”

Ahh. There was the seed of my uneasiness, that attitude that Down syndrome is “simply a medical diagnosis” that only provides a foundation for the acceptance and advocacy of the person, but is not good enough to actually be a descriptor of the person.

When I was pregnant, I had hoped for a daughter. Got her! I had hoped her hair would be red. It wasn’t, but that was OK. I had hoped her eyes would be blue. They weren’t, but that was OK. What I didn’t hope for was a child with Down syndrome. But she had it, and like her brown hair and grey eyes, it was never going to change. And that was OK too.

Yet, I fell in step with considering Down syndrome as “other,” rather than an integral part of my child, as if the “true” Kolleen transcended her diagnosis. “Look at her, her true self, first,” we seemed to be saying. “Look past the part we don’t like but have accepted.” By advancing the idea that calling Kolleen a “Down’s baby” was inappropriate, I was silently complicit in the unspoken but prevailing belief that Down syndrome rendered her less desirable, less satisfactory. Unwittingly, I was supporting the status quo, instead of advocating for my child. That was my mistake.

I was also asking the world to see Kolleen this way before even I could see her, before I knew who she was. At the time, I only knew a lot about her and her typical baby needs; her not-so-typical baby needs; her anticipated struggles; and, most frightening, her medical concerns. That list was long.

Soon after recovering from her first open-heart surgery, Kolleen’s personality began to emerge, as little baby personalities do. Overall, she was a sweet baby when life was easy and going her way, like when we cuddled, or when we went for evening walks, or even when I sang Broadway show tunes to her while we rocked. She was a loud, cranky baby when forced to endure physical therapy to ensure various systems would develop properly. She was a curious baby when blowing bubbles or licking lollipops for speech therapy, and playing with new, intriguing toys for occupational therapy.

The thing I remember most of all was, she a wickedly funny baby. If something she did made me laugh once, she would repeat the behavior again and again, until I’d laughed so hard, I had tears running down my face. Then we’d move on to a new activity, and about the time I was thinking of something else, she’d give me the side-eye and do it again. One. More. Time. Just to make me laugh. She was the funniest non-speaking comedian since Harpo Marx.

Thirty-one years later, Kolleen’s now a woman. A brown-haired woman. A grey-eyed woman. A sweet woman when life is going her way, a cranky woman when forced to do something she doesn’t want to do, and a curious woman when intrigued by something new. And, oh yeah – a wickedly funny woman who still makes me laugh a lot. You know what else she is? A Down’s woman. Why should we consider that last description incorrect? It’s as correct as all the others, but more importantly, it’s not inherently bad. Let’s stop treating it as though it were. Let’s stop treating the descriptor as though it were chaff to be separated from the more desirable wheat.

Down syndrome happens, like brown hair and grey eyes and short stature and tiny feet and whatever else your child may be born with. It definitely comes with challenges, but let me tell you, so do those “typical” children. It also comes with joys and profound life lessons not found elsewhere. There’s ample reason to consider it a check in the plus column. I understand that now. Kolleen has been an excellent teacher.