Today is Day 14 of 31 for 21, a blogging effort to promote awareness of Trisomy 21.
When my husband was telling his parents the news that our new baby had Trisomy 21, he made some kind of comment like ‘he’s a Down syndrome baby’. I really try not to interrupt his private conversations but this bothered me so much that I had to comment, and I loudly whispered to him, “He’s not a Down syndrome baby, he’s our baby with Down syndrome'”.
Does that sound like I was reacting to silly semantics? To me it didn’t feel like that. I felt the terminology was presenting our baby as a problem and was impersonalizing who he was (obviously this wasn’t dh’s intention). You don’t define a person by what is wrong with them. You don’t call an infant with strep a ‘strep baby’ – because that’s not accurate. You don’t call a toddler with leukemia a ‘cancer child’. You don’t call an adult a ‘heart disease man’. It’s really obvious when you use those examples how ridiculous it sounds.
And yet when it comes to T21, it’s normal for people to say things like, “he’s a Down syndrome boy” or “she is a Downs”. No, no, no. Just tonight I was speaking to someone on the phone who kept telling me about different people she knew with links to Down syndrome and saying things like, “Her daughter was Downs” until I felt like I had to say something. I know that people don’t mean to be offensive or hurtful, but there’s a much more appropriate and less demeaning way to refer to others. There’s a huge difference between referring to somone with T21 as someone who has Down syndrome, or someone who IS Down syndrome. A few days after my whispered comments to dh, I learned that it even has a name: people first language.
People first language means that when you speak about a person, you first speak about them followed by a mention of their disability or ‘issue’ – who they are is their primary defining characteristic, and their disability is just one aspect of who they are. It’s true that it’s a bit more wordy to say ‘a baby with Down syndrome’ instead of a ‘Downs baby’. But our words shape perceptions and reflect our understandings. Isn’t it worth a couple more syllables when we speak to focus on seeing people for who they are rather than what they have?