Tuesday, December 5, 2017

Take 2: The Cure For Down Syndrome

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Yesterday I did something that I never do.

I unpublished a post.

Did I regret what I said? Did I take it back?

No.

The truth is, the post I published yesterday wasn't angry enough.

I spent days crafting yesterday's blogpost. I heard about the scientists working on the cure for Down syndrome, and I worked hard to tackle this subject objectively.

I walked us through this process yesterday. Were there any pros? What were the cons?

I wanted to report the facts not only as I see them, but in a way that wouldn't offend while allowing room for other opinions on the subject.

And so my polite (and wordy) post tripped all the way through my experience with Down syndrome, Addison's uniqueness due to her extra chromosomes, and ended up somewhere comparing this "cure" to a machine that turns delectable, gorgeous sculptures of chocolate into plain pieces of bread.

Immediately after publishing it, something was bothering me. I had to go teach, so I didn't have time to dissect why. I just knew it wasn't right.

So I unpublished it.

It was while driving to work that it hit me.

The post wasn't angry enough.

If you know me at all, "angry" is not something I normally associate with my posts. But I really believe that this one requires it.

I don't care if this offends you. I know there are no doubt differing opinions to my own. This post is no doubt going to get me into trouble. Don't care.

I have to say it.

Hearing that they are working on a cure for Down syndrome makes me angry.

I am tired of society treating Down syndrome like a disease to be eradicated. I am tired of "progress" looking a lot like a Hitleresque mindset. ("Let's get rid of the imperfections!!! Extra chromosome! Here's an injection for you to take to make you more like us!")

No. No. NO.

I am tired of people twisting and turning Down syndrome until it resembles something politely grotesque that they will "like" a picture but then leave a nasty anonymous comment. I am tired of the pity. Of the "Poor POOR you". I am tired of the fear of Down syndrome. I am tired of reading every comment section ever under a Down syndrome news piece and feeling like all of human kind secretly feels that the world would be better off without Down syndrome.

I am freaking exhausted of this overriding theme.

Because this theme? Is nothing more than ignorance.

I used to be ignorant about Down syndrome too. And then I had Addison. She came blasting into our lives with all of the explosion one might expect of a first child with an expected diagnosis.

She changed our lives.

She's taught us to find deep joy in unexpected places. To observe exquisite beauty in places I never before thought to look. She showed us some scary, complicated medical moments...and gave us a front row seat to the goodness of God holding us up even as the world flooded around us. (Thanks, Ann Voscamp.)

God perfectly created Addison with an extra chromosome. His creation is good. And beautiful. Even in hard moments, there is strength and courage and patience that I needed to learn in order to be a better mom, a better teacher, a better person. She has been a more effective teacher than all my years of formal education combined.

I've gone from ignorant and sad about Down syndrome to thankful for this journey with such a fierceness that words can't properly express the outpouring of emotion as I type those words.

And this outpouring of emotional love toward Addison and Down syndrome translates into anger as I hear about this "cure". As I hear about a scientist somewhere looking at God's creation and deciding that "it's not good enough".

Stop. Stop it right now.

Stop treating Down syndrome like a disease. Stop wasting valuable resources when there are so many life-threatening diseases that still DO need a cure.

Just. Stop.

The only thing here that needs a cure here is prejudice.

So to sum up:
(look at me working on not being wordy! Growth!)

1. I am angry
2. Down syndrome is good
3. Stop with the cure nonsense

Maybe instead...go smile at someone today who isn't exactly like you. Ask how they are doing. Open your mind to diversity. See the beauty that comes with it. Observe the unique world around you and realize how much Down syndrome adds to that.

Because to my point of view? Down syndrome is the white, beautiful blanket of snow and twinkling lights of Christmas covering the ugly brown world of winter "normal". So stop. Stop trying to Grinch up my life.



3 comments:

  1. As an autism grandmother, I say Bravo! I stopped supporting Autism Speaks because they demonize autism.

    ReplyDelete
  2. I agree with you, wonderful post.

    ReplyDelete
  3. I liked the first post but LOVE the second one!! So true!

    ReplyDelete

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