I was thinking about the language we use with regards to Down syndrome, and what it implies.
“Down syndrome is one of the most common genetic birth defects…”Stanford Children’s Health
“Down syndrome is usually caused by an error in cell division…”National Down Syndrome Society
” But with Down syndrome, something goes wrong…”Web MD
“… there’s no way to prevent the chromosomal error that causes it…”Kids Health
What would it be like, to be a person with Down syndrome and hearing that you are the way that you are because of a mistake? To hear that you are defective? That you exist as the result of an “error”?
When a child is born as the result of an unplanned pregnancy, they aren’t told that they were a “mistake,” or the result of an “error” on the part of the parents. They might be told that they were a “surprise” or a “happy accident,” but it would be considered cruel to tell them that their existence is because something went wrong.
So why do we say these things about people with Down syndrome?
I think about my sister, Katie, who recently turned 19. Today, the two of us drew pictures, and she told me her (mostly accurate) version of the story of Dad’s life. She drew him with his birth parents, all as stick figures. Then she drew me, and I drew myself beside her. After dinner, we watched Star Trek together. She told me that Odo and Worf were her favorite characters, and we shared popcorn.
I enjoy spending time with her. We do things that most sisters do. We take walks, and watch movies, and play games, and draw pictures, and do all sorts of things. We might do them differently, but we do them all the same.
I don’t think her Down syndrome is a mistake. I think it’s part of her, and I love all of her, so that includes the Down syndrome. No errors were made here.
Could I imagine how she would be if she were born without Down syndrome? Yes, I could try. But I have no interest in doing that. I’d prefer to love the sister I already have, instead of wasting time speculating on the one I could have had. Wishing for her to be replaced by a copy without Down syndrome would feel like a betrayal.
I don’t want her to feel like people are wondering about who she could have been. I want her to know that we love and support her the way she is.
You might ask, “If we don’t call Down syndrome a mistake, then what do we call it?”
Well, I can paraphrase how I’ve described it to Katie:
“When you were created, something different happened. Normally, everyone gets 2 copies of each chromosome (one from each parent). But with you, something unusual happened: you got an extra copy of your 21st chromosome. You have 3 of them instead of 2. That extra chromosome is why you have Down syndrome.
Down syndrome is a disability that you will always have. Some things will be harder for you. You might learn more slowly, and need extra help sometimes. People with Down syndrome are often very kind, and may love music. It’s a part of you that’s unique.”
Katie understands that Down syndrome is something that makes her different. She’s also chosen to embrace it. She asked me which parent gave her the “gift” of the extra chromosome, and I explained that we don’t know. Had she known, she would have thanked that parent.
Loving Down syndrome is a natural extension of loving herself and her life.
Down syndrome is different. You could accurately call it rare, unusual, or unique. But that’s not a mistake. It’s just part of human diversity.
Mistakes happen all the time. But my sister isn’t one of them.
How do you describe Down syndrome?