I took two of my children to the mall a few weeks back. After stocking up on sneakers and sandals, we stood in line to ride the carousel. I paid $2 each for their tickets, then the lady at the cash register peered over the counter at my daughter Penny. "Is she a special need?" she asked me.
I stammered something in response.
"Special needs ride free," she said, handing me back my money.
I suppose it's a nice policy to give free rides to kids with special needs. I don't fault the lady behind the ticket counter for not knowing about "person-first" language—which is to say, she could have asked, "Does your daughter have special needs?" I don't fault her for seeing what is written on my daughter's face—Penny has trisomy 21, better known as Down syndrome, the presence of a third copy of chromosome 21 in every cell of her body.
At the same time, something bothered me about the exchange. However kind her intentions, she looked past my particular child and saw instead a broad, abstract, dehumanized category. Instead of seeing Penny, she saw "a special need."
Plenty of factors probably played into that moment, but it left me thinking about how our culture talks about Down syndrome.
I receive a daily Google alert for news stories and blog posts with the keyword "Down syndrome." There are plenty of heartwarming tales—the kid who shot a 3-pointer, the waiter who stood up for a patron with Down syndrome at the risk of his job, the gradual inclusion of characters with Down syndrome in clothing catalogues and on television shows. And in the same list as these positive takes come the negative stories: the prenatal tests designed to alert pregnant women as early as possible if their fetus has Down syndrome so they can opt to abort, the children abused by their caregivers, the young man killed at a movie theater by police after he refused to pay for a second ticket to Zero Dark Thirty.
But in both strands, the good and the bad, the language employed to describe people with Down syndrome betrays both cultural ignorance and bias. Many writers, for instance, employ the word "suffering" as a matter of course. Back when Sarah Palin was in the news, her son Trig was often described as "suffering" from Down syndrome. The New York Timeshas a photograph of a baby floating in a pool and smiling at his mother. The baby "suffers" from Down syndrome. The Huffington Post describes a young woman who is going on a date during an episode of Family Guy as someone who "suffers" from Down syndrome (I should note that in this episode the character with Down syndrome does get mocked, but there is no indication that she suffers from anything other than disrespect and meanness). The Global Grind's report of a towheaded little boy with Down syndrome who models for Target includes a picture of Ryan with a smile and a description that says he "suffers."
In other words, across the media landscape, children and adults who are going to work, interacting with their parents, experiencing the typical joys and sorrows of life, are nevertheless in a perpetual state of "suffering."
The media also tends to use the term "Down syndrome babies" rather than "babies with Down syndrome." For an industry that aims at political correctness, it is striking that journalists often ignore the preferred language people with Down syndrome have offered to describe themselves and instead perpetuate the idea that having a 47th chromosome is the person's most descriptive attribute. Again, a smattering of examples: "She just didn't look like a typical Down syndrome baby" (New York Times); "One mom's struggle, joy with Down syndrome baby" (Today Show); "And yes, she really did walk the walk when she found out she was carrying a Down-syndrome baby" (Ann Coulter describing Sarah Palin in TIME). I could go on.
Members of the media speak in broad terms about any number of groups, but again, reporters attempt to use the language that groups have designated as appropriate for their outlet. The Style Guide for the New York Times explains, "This [style manual] counsels respect for group sensibilities and preferences that have made themselves heard in the last two or three decades – concerns, for example, of women, minorities and those with disabilities. The manual favors constructions that keep words neutral..." But even when trying to tell a positive story, many who write and report about people with Down syndrome (for the New York Times and elsewhere) do so through a negative lens that equates Down syndrome with suffering.
Whether with benign or malicious intentions, many people discriminate by looking at people with Down syndrome categorically, before recognizing them as individuals. They assume that all people with Down syndrome look alike, or all people with Down syndrome are sweet, stubborn, angels, or drains on society. I suspect that these biases arise due to the physical characteristics that visually connect individuals with Down syndrome combined with ignorance about the potential for meaningful lives among individuals with intellectual disabilities.
Jesus' ministry was marked by an ability to see individuals. In Mark 5, he wasn't content to heal the bleeding woman, but rather insisted upon looking her in the eye and restoring her sense of belonging. He calls her "daughter." Jesus almost always heals through physical touch, through personal connection. Whether addressing Zaccheus or the woman at the well or Nicodemus or the thief on the cross, Jesus refuses to address them according to their social or religious groups (tax collector, adulteress, Pharisee, criminal) but instead insists upon seeing them as a particular person.
Individuals with Down syndrome are as varied as people with 46 chromosomes. The media often fails to use language to convey that diversity and individuality, and their language both reflects and affects the way the general populace talks about and sees children and adults with Down syndrome. But Christians can, and should, ensure that their language reflects the individuality of each person with Down syndrome as we imitate the one who calls us each by name.
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