The Down Syndrome Memo

Here's the story. A woman agreed to be a surrogate mother, the fetus was diagnosed with Down syndrome, the couple demanded an abortion, the surrogate mother refused, the couple decided not to sue, and now the surrogate mother is living happily with her daughter and partner.

They wrote a book, Saving Delaney, and got a nice write up in People. I hope their book does great!

Here are two quotes from the piece, though, that trouble me.

Two months into Andrea's pregnancy in 2012, prenatal tests showed that the baby had Down syndrome, in addition to other complications, Keston, 50, tells PEOPLE.

Doctors had said that the unborn baby, nicknamed "Peanut," would most likely suffer from blindness, autism and a severe heart condition – if she survived birth.

What the doctor said here is wrong. Factually wrong. I've talked to hundreds of parents over the past few years who have similar narratives, sometimes worse (child will die!), sometime less about the child (your marriage will end!), and all wrong. This is why I'm pro-information, and I want laws with teeth that demand doctors provide accurate information.

Doctors like this piss me off.

But I was also troubled by this:

"Delaney did not get the memo that she has Down syndrome," says Keston. "It does not limit her. She talks and she says sentences at two. She plays video games and Barbies with her siblings. She loves to dance when Ellen DeGeneres is on TV. When we watch her show, Delaney's got to get up and bust a move with Ellen."

I'm glad Delaney is doing well, but we must stop arguing that our children have value based on function. My son, 9, doesn't talk. Did he get the Down syndrome memo? I'd like the mothers (with whom I've discussed this on Facebook), as they move into this highly public phase of talking about Down syndrome, to be deeply conscious about how their "function-based" claims of value for Delaney exclude less functional people. I know it's unintentional, but the exclusion happens anyway.

And what if, 10 years from now, Delaney in fact has severe delays in some category? That will make her life no less valuable or their story no less awesome.

I was going to write a long essay about this, but instead, Meriah Nichols did it first with: Let Down Syndrome Define You.

Moxie, my love. It seems that some kids aren’t getting the memo that they have Down syndrome.

Seems like some parents are tickled that their child with Down syndrome is acting more like a typically developing child than not. That is, when their child is growing, learning, speaking, moving and acting as a typically developing child would at the same points in time. They don’t want their child to be “defined” by Down syndrome.

Moxie, I want you to get the memo that you have Down syndrome. And I want you to be defined by Down syndrome.

As my friend and writing partner Lawrence Carter-Long says ... SAY THE WORD!