“Sticks and Stones can break your bones, but words can never hurt you.” Honestly…who ever came up with that? We all learn early on that words can hurt you – just as painfully as a slap on the face sometimes. The truth is, words can sting, and feelings do get hurt when inappropriate ones are used.
When our daughter was younger, I knew a woman who worked with youth regularly. She taught me a lot about intentional language, just by observing her, and the care that she took with her words. She was one of the most deliberate people I had ever met. She had known the power of language; the sting of words misused. I knew her before Caleb was born, but since his birth, have learned firsthand that same power; that same sting. Before he came along, I’m embarrassed to admit that I was guilty of using a few terms that make my skin crawl today. March 15, 2007, it all changed, and became much more personal.
When you love someone who has challenges, the importance of language, and words, is brought to the forefront, especially if the person you love has intellectual/developmental disabilities. Words like the "R-word" can seem like daggers; they hurt my ears, like nails on a chalkboard. Sure, it's easy to say there's nothing meant by it, that it's all in jest. But when those types of words come to represent people you know and love, it's not a joke anymore. Telling someone not to take it personally, to "lighten up", is easy when it's not your child, your sister, your uncle, your friend.
As Caleb got older, I became aware of not only the hurt that slang terms can cause, but the importance of "people-first language". People with Down syndrome are just that - people with Down syndrome. They aren't "downs". They aren't Down syndrome kids. Just like people with, say arthritis, aren't "arthritis people", they are people who have arthritis. Proper use of people-first language is important. It places the individual before the condition - whatever it may be. Down syndrome is also not a disease, it's a condition. People don't suffer from it, they simply have it. Kathie Snow, with Disability is Natural, has a terrific page on this topic. (Note, some disabilities such as Autism may prefer Identity-First Language).
I’ve learned that even the most “educated” people can use outdated terms and inappropriate language; some might be professionals – doctors/nurses, educators, therapists, etc. Correcting them is, in my mind, a responsibility to not only my child, but all the other clients they have. Other people are harder. Some people have used it for years, even other parents, and I tend to cut them some slack. Given the fact that I myself use “Down syndrome moms” at times, I think it’s just a shortcut in speech. I will, however, use “child with Down syndrome” in my reply to them – hoping they get the hint. Older people; especially older relatives, who grew up in a different era – that’s even harder. “Downs” typically gets a pass from me, but mongloid (yes, I’ve heard that) or retarded kid (that too) gets a correction from me, ie. “please use person with Down syndrome', that term isn’t used anymore.
It’s hard the first few times, if you’re not used to speaking out about things. It might be your first taste of “advocacy”. But it does gets easier. Awareness days, weeks, and months are perfect times to send reminders to friends and family – whether it be a general email on the condition or disability, or a social media post. October is approaching, and as Down Syndrome Awareness Month, it’s a great time to help remind people that language matters! #peoplefirst #wordsmatter
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