A few words about Down syndrome

With our daughter Lyra’s birth, we learned, among many things, the importance of language when discussing her diagnosis.

In my lifetime, using the word “retarded” to describe a person with Down syndrome has become entirely unacceptable. I understood this perhaps as early as the 1970s. However, I still used the word to describe nonhuman things that might frustrate me from computers to proposed legislation.

I had to work at it, but I have completely scrubbed the r-word out of my vocabulary. Why? Because it has become a put-down in all contexts with the original referent being people with Down syndrome. Though the word was never ideal, it was once commonly used, including by the very organizations that support people with DS.

The Arc is one of the oldest of these organizations. Until 1992 it was known as “ARC,” an acronym for “Association for Retarded Citizens.” Their website includes a thoughtful explanation of why the name was changed, and that today the only r-word to use when referring to people with intellectual disabilities is “Respect.”

Here in Ohio, each county had a “mental retardation and developmental disability” (MRDD) board until 2009 when they were all retitled “developmental disability” (DD) boards.

When Lyra was 2 years old, I reread an essay I had written soon after her birth. While waiting several days for Lyra’s chromosomes to be analyzed, I wanted her diagnosis to be mosaic Down syndrome, in which not all cells have a third 21st chromosome. Why? Because in those first days after an unexpected diagnosis, I hoped for Lyra to have “milder symptoms,” as though Down syndrome were an illness.

“Milder symptoms” is a legacy of the terms “mildly retarded” or “severely retarded.” Even today, books and articles concerning pregnancy and childbirth still sometimes use the language of illness, such as this example from a parenting website: “While everyone wishes for a healthy baby, you may have one with Down syndrome.” (Disability rights activists petitioned the publication and the language was eventually changed.)

Lyra, thankfully, is a robustly healthy child. While some children with Down syndrome have other health issues, to confuse a diagnosis of DS with poor health is as incorrect as confusing deafness or blindness as poor health.

Lyra is just a kid, not a “Down’s kid.”

Also important to all people living with any diagnosis is people-first language. Lyra is not a Down syndrome girl, she’s a 6-year-old girl, a kindergartner, a sister to her four brothers, and a lover of music, books, playgrounds and cats. The British cartoon “Peppa Pig” is Lyra’s favorite show, from which she’s learned to pronounce several words in the Queen’s English including “luh-vley” for “lovely.”

And Lyra has Down syndrome. She’s not a Down’s kid, she’s a kid. Just as any person with any diagnosis is a person, not a diagnosis.

Yet the first months of Lyra’s life, I stopped myself multiple times as the words “Down syndrome child” slipped past my lips. People-first language is so easy to understand. However, it took time for me to consistently apply a simple turn of a phrase that identified my daughter as a person, not as her diagnosis.

“They are all so sweet, people with Down syndrome.” I’ve heard this many times, particularly in the months after Lyra’s birth. While it is statistically true that higher percentages of people with Down syndrome claim being happy with their lives than the typical population, calling them “all so sweet” is a stereotype that denies the full range of human emotions in someone with DS.

And what can happen when someone does not behave in accordance with the stereotype ascribed by society? In January 2013, Ethan Saylor, 26, was killed when he did not behave like a sweet man with Down syndrome.

While his caretaker had stepped out to retrieve her car, Saylor, an ardent fan of law enforcement and the military, slipped back into the movie theater where he’d just seen “Zero Dark Thirty.” Because he’d not bought a second ticket, the theater manager alerted security officers, all off-duty sheriff’s deputies. Saylor’s caretaker returned just as the deputies arrived and warned them not to touch him because it would cause him to “freak out.”

Rather than listen to the person who knew him, the deputies dragged Saylor down to the side of the movie screen, just out of the sight of the audience. Because of his failure to buy a $12 ticket, Saylor was wrestled to the ground, his larynx was fractured and he died of asphyxiation. Rather than watching the movie, the audience listened to Saylor cry for his mommy in his last moments of life.

Until I was 46, I gave the disability rights movement little thought. Since Lyra’s birth, however, I think every day about the need for acceptance and inclusion of all people with disabilities in all facets of life. This includes medical care, education, employment, housing and relationships. It also includes freedom from harassment both in public and at home.

Acceptance is born from understanding and understanding is best gained by exposure. That is why October is National Down Syndrome Awareness Month — to introduce our communities to our loved ones with DS, who are often their own best advocates, and to dispel misinformation about what a DS diagnosis means.

Words matter. Choose yours with empathy. And when someone uses outmoded or inappropriate language, consider their intent. If someone is using the only language they’ve known to discuss Down syndrome, but they are doing so kindly, I welcome it as a teachable moment. For I, too, have had a long history of needing important matters, including the language of disability, pointed out to me.

This was first published in the Akron Beacon Journal on October 21, 2018.

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