Editor’s note: Shannon Dingle shares a story in honor of Down Syndrome Awareness Day.
I was planning to post this here today anyway, but today is also World Down Syndrome Day, 3/21. The date was chosen because people with Down syndrome, or Trisomy 21, have 3 copies – the two typical ones plus an extra – of chromosome 21. And, as one more educational note, the preferred spelling – at least in the USA – is Down syndrome, not Down’s syndrome.
I know and love a precious little boy. He loves cars and dogs. He likes giving hugs. He would rather run than walk. He cuddles with his parents and looks up to his older brothers.
Oh, yeah, and he has Down syndrome and a seizure disorder, and he’s had more surgeries than years of life.
He isn’t just a kid with Down syndrome. He’s a kid who reminds me of my son Robbie in a lot of ways. And who also has some medical and intellectual baggage that’s different from most kids.
I know lots of mommas who don’t like sharing their kids’ disabilities with people because then some people will never look at their kids the same way after that disclosure. They will always view the child through disability-tinted glasses.
That’s why it’s standard practice in special education to put the person first – “a kid who has Down syndrome” rather than “a Downs kid.” The concept of person-first language is often considered to be about political correctness. And it is, a little.
But it’s more about compassion. About not defining a kid by his disability. It’s about caring about him as a child. It’s about putting the kid first and the disability second in our thoughts, actions, and words.
The APA stylebook gets it right with their first statement under 3.15 Disabilities: “The overall principle for ‘nonhandicapping’ language is to maintain the integrity (worth) of all individuals as human beings.”
God calls Gideon a warrior when he’s cowering. God sees that his struggles don’t define him and that there’s more to him than his present condition.
God calls believers saints and makes us righteous, even though most days it would be more apt to label me “disobedient” or “sinful.”
God still knit together my young friend in his mother’s womb. God loves him. When Jesus invited the children to come to him, He didn’t stipulate that only the kids with the correct number of chromosomes should come.
God is the one gives each of us worth.
I don’t think that Jesus would flippantly label Thomas with the moniker he is often assigned, “Doubting Thomas.” Did Thomas ask for evidence of Christ’s bodily resurrection? Yes. Was it his finest moment? Maybe not. But he’s known by many as the guy who doubted.
It think it’s because we love categories:
The kid with Down syndrome.
The guy with cancer.
The young wife who is struggling with infertility.
The abused woman.
The girl in time-out (who, by the way, is my daughter right now, but that’s another story).
Labels aren’t wrong. They aren’t (always) untrue.
They are typically overly simplistic, though.
If it’s useful to refer to someone by his/her label, go ahead. If a label isn’t necessary, though, think before you speak. Please.
Because my little friend is a sweet boy who you would love to know. When his momma looks at him, the first words that come to mind aren’t “Down syndrome.” If you stop at the definitions given by his disabilities, you might miss out on all the sweetness that his momma sees. You might miss out his “integrity (worth)…as a human being,” a worth that was created by the same Creator who made the other kids you know and love.
Let him be a kid, first and foremost.
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Beautiful post! My son is 23 and is severely autistic. I fully understand hurtful labels can be and yes, they are often too broad and don’t really represent any one individual. Thanks for writing this.
it is good to hear that from you brother.