No magic pills, thank you

A commenter on a piece I wrote last week asked the following question: “If a pill were developed tomorrow that would erase your daughter’s Down syndrome, would you give it to her?”

I was glad to be asked this because it gave me an opportunity to state publicly something that I’ve been mulling privately for a long time. The answer to the question is “no.”

Surprised? Let me explain.

I don’t view Magdalena’s Down syndrome as a curse. As I’ve noted before, she is not ill. Her Down syndrome is not a disease, it simply is. By that I mean: Down syndrome is who she is.

I know this is difficult for people to accept. But there simply is no other Magdalena. There is no Magdalena that is cleaner, purer, or undefiled by these extra copies of her 21st chromosome.

As George Will noted in his recent Washington Post column celebrating his son Jon’s 40th birthday, “Down syndrome did not alter the trajectory of his life; Jon was Jon from conception on.”

Similarly, Magdalena was Magdalena from conception. There was no moment when the real Magdalena was suddenly obscured behind the mask of Down syndrome. When her parents’ chromosomes came together, Magdalena’s Down syndrome was there.

So asking if I would give her a pill to make it all go away is, to me, the same as asking, “Would you trade in your child for a new one if you could?” That’s how we think about used cars. That’s not how we think about human life.

There are no abstract human lives. There are only real, living, breathing people. To ask me to consider—even as a mental exercise—if my life would be better if she wasn’t who she is, is to ask me to deny my love for her. I love Magdalena. I don’t love some abstract idea of her, or some version of her that doesn’t exist and never could exist.

So the answer is “no.” It will always be “no.” And until people understand why it truly has to be “no,” I suppose I’m just going to have to keep writing about Magdalena. Her life is a gift precisely because every life is a gift.

The one known “cure” for Down syndrome is prenatal murder. It’s a cure that is applied with shocking frequency. Now—if I could take a pill and make that go away, I’d have to consider it.

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Comments

  1. Thank you for expressing so eloquently how parents of a child with Down syndrome feel, especially when someone in the public sphere begins posing that question. I get especially mad when people start calling scientific research into drugs that could help improve memory and brain function a “cure” for DS. As you said, Down syndrome is not a disease.

  2. Anonymous says:

    Beautiful Matthew.
    Karyn Devito

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