“He has a disability,” my nephew blurted to my neighbor when we stopped at the corner by her house to say, “Hi.”
He was trying to explain why my boy, Raphael, sat in the buggy trailing my bike, while he and my older son were sporting two-wheelers around the block.
My nephew’s words startled me.
Just before his announcement, I had been proudly pointing out the adorableness of this kid to my neighbor, Peggy, and I suppose offering a subtle comparison of my own between Raphael and his much larger cousin by stating that the boys were both 5 years old.
My nephew’s accurate words conveyed a similar notion but were far more direct, as only a kid can be.
I began to wonder about the words people use to distinguish disability – to describe Down syndrome.
I wondered about the impetus for using a disability label instead of a more precise, but lengthy explanation.
I wondered why we feel compelled to explain differences at all.
Certainly Raphael having Down syndrome doesn’t relegate him to the bike trailer, but the low muscle tone, short legs, and delayed development that can come with the syndrome are the reason he doesn’t yet ride a bike on his own. Sometimes I feel bewildered by the need to explain why he is the way he is, and summing up all the ways he differs from typical peers into a label, such as Down syndrome, doesn’t give quite enough information.
Recently, our family took a friend’s two children with us to a sensory-friendly screening of the film A Dolphin’s Tale 2. The Autism Society partners with AMC theaters to make it acceptable for kids to move around and make noise without experiencing sensory overload at the movies each month. The lights are up, the sound is down, and kids can act like the talkative, active little people they are.
A teenager in the theater was making a lot of strange noises, and Bryn, 7, asked why. It was as innocent a question as the previous one she’d asked about why the lights never went down.
I told her that the boy was probably having some feelings he needed to express. I told her it’s okay to make noises at that movie and we could just sit there and let him make sounds.
My response was simple. (Perhaps an even more meaningful teachable moment escaped me.) I had succinctly described what was up with the boy so that Bryn would know that he was a kid just like her. I wanted her to know how to respond to his seemingly out-of-place antics. In this case, that meant to simply not stare at the loud boy, to just let him emote, and to enjoy the film.
My 7-year-old, answered Bryn differently. Elijah said, “It’s okay, he just has special needs.”
I chimed in, “Right, like Raphael has some special needs, too.”
“Oh, right,” Bryn replied. “Like, Raphael wears glasses.”
“Yes,” I agreed.
And that was that. Out of the mouth of babes…
Kids just want satisfying answers to their questions. Too often, grown-ups answer entirely different questions than the ones kids mean to ask. That’s why I sometimes find it best to answer a question with a question or to first muse aloud in mutual wonder.
There was no need to label the boy’s disability in that moment at the movies. There was no need to describe the myriad ways that autism spectrum disorder or Down syndrome affect a person.
Wearing glasses does make Raphael different from the majority of his peers. Just as the movie-theater kid’s uttering of strange sounds makes him different. Bryn’s having a faint angel kiss on her forehead (a beauty mark given during childbirth) makes her different.
Some distinctions can be classified as special needs. All distinctions are simply individualisms. None of them need to convey any measure of worth about an individual.
I’m not saying, “Don’t distinguish between people or differentiate.” The ability to discern is a fundamental we teach children early on, as in spotting certain symbols as numbers and others as letters. Kids need to categorize colors and shapes before they can learn how to add and subtract, and ultimately, to become independent. We, all, constantly compare and contrast and define.
What matters is that one’s self-identity, and the words one uses to compare, do not hinge on downgrading the value of another human being.
For the sake of appearing fair, Raphael’s kindergarten teacher likes to emphasize that all her students have something special about them. It’s a nice thought. Harmless, really.
But if everyone is special, then no one is, which is precisely my point. I wish the world could see that having Down syndrome is as special and as ordinary as every other trait a person could have.
Since it’s October, which is Down Syndrome Awareness Month, I urge you to really get to know someone who has Down syndrome, if you don’t already. You’ll understand that we are all more alike than different. Next, I ask you to think about your attitudes, beliefs, and the words you use about people who are different from you and look for personal bias.
Earlier this week, a community group in Ft. Collins, Colo., discussed the importance of considering the negative context of the word “illegal” because the restaurant chain Illegal Pete’s (which by the way, makes such giant burritos that I order a kid’s size) is about to open in town. Because illegal immigration and discrimination against people of Mexican heritage are hot topics in this region, labeling someone “illegal” can be an insult – or even a threat.
According to The Coloradoan newspaper, “’Social context is hugely important,’ Fort Collins immigration attorney and meeting moderator Kim Medina said. ‘We’ll never get to big issues, such as immigration reform, until we can solve these smaller issues of language.’”
I liken the lawyer’s statement to how we, in our society, talk about people with disabilities. We’ll never get to fully accepting and including people with disabilities until we look at the words we use to describe them.
My son wasn’t a “Down syndrome baby” and isn’t a “Down syndrome kid.” He is Raphael.
Although those descriptors are not technically wrong, and having Down syndrome is an inextricable component of who Raphael is, an inelegant word choice, such as “He’s Down’s,” quietly reinforces seeing him solely for his disability rather than as a complete person. His condition shouldn’t define him or diminish the value he contributes to society as a fellow human being. Down syndrome is just something he has. What he is, who he is, is far more interesting. The term “Down syndrome” needn’t be used as an adjective.Society’s lexicon has replaced “fireman” for “firefighter” and “stewardess” for “flight attendant” because the latter terms are more accurate and inclusive. People-first language proponents would rather we say “John uses a wheelchair” than “the handicapped man” or “John is wheelchair bound.” That’s because words impart attitudes and reveal social conscience. And vice versa: Attitudes shape language.
Both attitudes and language drive our actions. Both can evolve.
Pledging not to use the word “retarded” may seem like propaganda for political correctness, but understood in the social context that people who have Down syndrome are routinely dismissed, devalued, denounced, denigrated – and even killed – it makes sense to sprinkle compassion and sensitivity into one’s speech.
Social change starts by self-monitoring our own thoughts and speech so that we aren’t inadvertently stigmatizing others as inferior, stupid, unacceptable, or worse, which is indeed how people with disabilities are still frequently regarded nowadays.
When my nephew said, “He has a disability,” to distinguish something about his cousin, he didn’t mean anything untoward.
It’s true; Raphael has a disability. There’s nothing wrong with describing him that way if you happen to be talking about Down syndrome or something related to his condition.
But what my nephew or I could have said instead was “He is bigger, and Raphael is smaller” or “He can ride a bike, and Raphael rides in a trailer.” Or perhaps, nothing at all.
Choosing our words carefully means we are working to reduce the social justification for prejudice and inappropriate discrimination.
So please, don’t reduce another person to being nothing but a diagnosis.
When people talk about a person who happens to have an extra chromosome like my boy, they often say, “So-and-so is Down syndrome.” Or they feel compelled to point out that “He has a disability” as if it wholly encompasses who he is, and perhaps inadvertently, rejects his capacity and capability.
Raphael, my son, isn’t Down syndrome. He is so much more.