I feel like I’ve written about this before, but those words/language have been popping up again.
I’ve caught a few of our medical professionals lately saying the term “Down’s babies” or peers who say the same phrase. It rubs me the wrong way. I’m still not sure whether to correct people or not. The medical professionals are who surprise me most - I just assumed they were trained in people-first language - ?!
Most of the community in North America winces a bit at “Downs baby/kid.” Would you call someone an “ADHD baby” or an “Autistic kid?” Probably not - they are still a baby/child - with a name! - who happens to have a condition. Like I’ve said; conditions do not define a person. It is a characteristic.
I’ve also read literature about “our kids with disabilities”... I know Hannah will learn gross motor skills a bit slower and may not be cognitively up to speed with her peers, but I truly don’t see her as “disabled.” She’s very able-bodied, just taking a bit longer to hold her head up, roll, and sit.
I’ve mentioned before that the words “normal” and “healthy” have a new meaning to me. “I just want the baby to be healthy.” You mean without Ds or an organ defect like my baby? Shoot, I know I’ve said the exact same thing. I listen to people say, “Thankfully the baby didn’t have a genetic disorder...” My immediate thought is, “What - thank goodness that baby isn’t like my Hannah? Is Hannah NOT normal or healthy?” I can’t help it - Mama Bear bristling and protective of her baby. But I do know; everyone wants a “healthy” child. No one wants their child to have a condition to hold them back.
I know intentions are never bad, nor directed. It’s just hard not to be sensitive to certain words and phrases that have underlying meanings. Though I’m sure most times people don’t realize it. I try not to be overly sensitive and don’t want people walking on eggshells with their words. I think Tim is probably way better at shrugging it off than I am.
I also sometimes find myself with slight resentment - ugh : ( I hate it. I don’t want to feel that way. Not even from the Ds diagnosis - it’s more from not being able to really hold/snuggle for those first 17 days, not being able to nurse for medical reasons... All those picture-perfect images you imagine and see with a newborn. Those moments I gratefully did experience with Nora.
We’ll have constant hurdles for Hannah. Eating. Walking. Schools... ugh, I can’t even think about the schools yet...
Well that was some rambling, eh? Sometimes you just need your train of thoughts out!
I do have an awesome life! And so does Hannah, Nora, Tim AND Ailo! : )
Unfortunately some people just don't know any better and it's up to us to educate. Love you!
ReplyDeletePeople will catch on & it will get easier. Be patient with us. <3 (p.s. love the precious photo of our angel!)
ReplyDeleteKeep writing about this. Your perspective opens people's eyes.
ReplyDeleteMost of us don't know any better and most people are not trying to offend you and are willing to learn. But I have to say, if I were in your shoes, I'd feel the same way. Especially with first weeks and the nursing. Love you momma!
ReplyDeleteI lost all my respect for Iceland when I learned they are trying to eradicate Down Syndrome from their country. I have taught people with Down Syndrome and learned more from them than I could teach them. As you watch her grow over the years, I'm certain you will learn what I did. This post was written nearly three years ago, so I'm sure you have learned quite a lot. BTW, I'm an Aspie - they changed the name, but we're still here! - so I know how it is to live with challenges. One big difference is it doesn't show on my face, only in my social awkwardness.
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