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The Issue Dividing the Down Syndrome Community

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We all remember where we were when the First Diagnosis came — in the hospital right after delivery, in the doctor’s office, on the phone with the geneticist.

“Your child has Down syndrome.”

However we processed the information, those are words we’ll never forget. They instantly seem to divide us from all of the families who have only “typical” children, and they instantly lump us together with that group of families who have children with disabilities. 

Hopefully we go on to find that being in the second group — of families with children with disabilities and more specifically of families with children with Down syndrome — can be a good thing. Wonderful friendships can be formed, information can be exchanged, burdens can be shared. We’re united, and we stand together.

But then comes the Second Diagnosis — the one we impose on ourselves and the one that divides this wonderful community. Hints of it bubble up in conversation. She’s already holding her neck up, which the therapist says is a good sign. He’s very alert, which the doctor said is a good indicator. She’s babbling quite a bit, which is promising. And then out it comes, He surely is going to be “high-functioning.” Those who also think their child is high functioning nod in recognition, and those with concerns about their children become silent. The community has divided itself and increased the pain of some. How tragic.

Many times this discussion begins as an outlet of a new parent’s anxiety — someone who has an infant, someone who’s grasping for any indication that perhaps the news isn’t so bad. Perhaps Down syndrome will be manageable if the child is “high-functioning.” Where the hope of having the perfect baby has been dashed, new hope arises — a hope that the child will be off-the-charts for children with Down syndrome.

Certainly we should still talk with medical professionals about one’s abilities and which therapies might be most effective. But since there are so many accounts of children who have exceeded medical professionals’ predictions, I wonder if the discussion of high-functioning vs. low-functioning makes sense to have at all.

We live in a society that loves to divide — by race, by religion, by gender, by accomplishment, no matter how large and no matter how small. There are many wonderful things about the community we find ourselves in when we have children with Down syndrome. Let’s make sure not dividing ourselves is one of them.

The Mighty is asking its readers the following: What’s one secret about you or your loved one’s disability and/or disease that no one talks about? If you’d like to participate, please send a blog post to Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

Originally published: May 28, 2015
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