I’m not sure what to say when they ask

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“How did he get it? Was it something you did during pregnancy?”
I want to say: Maybe when I reincarnate as a scientist in my next life, I’ll let you know, OK?

“He looks normal, doesn’t look like he’s sick.”
I want to say: Sure, like if you get Alzheimer’s one day, you’ll stop being normal.

“How bad is his Down syndrome?”
I want to say: Hm, I don’t know… do you know how bad your stupidity is?

It’s a dangerous thing, being ignorant.

You don’t “get” Down syndrome, it’s not contagious and you either have it or you don’t.

And what is normal, anyway? If you are mobile enough that you can travel anywhere you want, are you considered normal? When you get old and your eyesight gets weak and you still can travel anywhere, are you considered normal? When you have mastectomy (breast removal) due to cancer, and you still can travel anywhere, are you considered normal? If your legs got amputated, are you abnormal or disabled? How about this — if you get assistive tools like wheelchairs and artificial legs and can travel anywhere, are you considered normal? I have near-sightedness and I need assistive tools (eyeglasses / contact lenses) to see better… does that make me normal/abnormal?

And about how “bad” Down syndrome is? I wish I have the words for that, except, maybe, just giving them “that” look would just be enough.

Words can be a self-fulfilling prophesy. This is why parents whose children have a disability are very sensitive about how the person and the disability is addressed. My child is not a Down syndrome child, he is with Down syndrome. Would you call you child a fever child, if your child has fever? And, the 6-letter “R” word, mostly used in a negative term, is insulting, too (in Malay it’s called terencat, which is equally negative). It’s as bad as the 6-letter “N” word that people used to address the African-American community.

So choose your words carefully. Stop being afraid of these differences. Start learning about them.

I have more to say. Don’t worry.

spacerspacer
24 August, 2010 in Life in General, MaPa & In-Between by Mommy (Lorna) 2 Comments
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