A couple months ago, Amy Julia very bravely posted on the NYTime’s motherlode blog about her experience being the mother of a child with Down Syndrome and her decision to turn down genetic testing for her current pregnancy. When I heard this I immediately cringed. The motherlode readers and their vicious responders have never taken well to anything that smells of the sanctity of life position. I knew she would get nailed.

She was nailed and in the worst possible way – about her own child. She wasn’t preachy or judgmental. She just shared her story. But even this was considered too radically invasive to stand with some readers. One reader in particular (“DH from Boston”) was so horrific it took my breath away:

It’s one thing to promote acceptance and understanding of people with defects, but it’s a completely different thing to insist that such defects are not problems or burdens, and that people shouldn’t be worried or saddened by news of a defective baby. I’m tired of people painting crippling disabilities in a rosy light, claiming that it’s all the same and “just another way of being.” No, such a condition IS a problem, and to condemn people who aren’t “celebrating” at the news of carrying a Down baby is hypocritical and unrealistic. Choosing to bring a child into the world, knowing that s/he will be doomed for life with such a condition, isn’t something that every woman is ready to do, or should be obliged to do.

Of course, Amy Julia isn’t all roses about her experience with Penny (does anyone have an all roses experience with any child, disabled or not?) and she doesn’t condemn people who want to test. All she does is problematize the issue and try to bring up a different perspective for discussion.

But what I found most fascinating about this discussion is how “being the mother with a Down syndrome child” means you can’t legitimately talk about it. You can’t be “objective” in the discussion because you are masked by the love of your own. You are an impotent moral voice, drowned out by your experience.

At the same time, I get a lot of push back for not being the parent/relative of someone with an intellectual disability when I try to enter the conversation. How dare I make judgments about keeping a disabled child when I don’t know how hard it is? No one can say say how they would respond to a DS diagnosis unless they’ve been there, I have heard so many times.

We live within these extremes and end up with the conversation around intellectual disability placed almost entirely in the hands of medical professionals. This has grave implications when it comes to conceptions of happiness and the identification of flourishing, something that can only be assessed in relationship to people with cognitive disabilities. The conversation has been muzzled and we end up in the dead zone of costs and efficiencies instead of being able to say these difficult things that spring from love, expectation, faith and hope.


One thought on “the muzzling of coversation around intellectual disability

  1. Yes, you can know how you would respond to a diagnosis before you face it. You can be prepared. I’ve been meaning to tell you this and I’m glad it came up: When you were pregnant with T-bop you shared on your blog how you were prepared to welcome her no matter what. And just by broaching the topic, I had to deliberately think about how I would respond to bearing a child with a disability. It wasn’t a difficult conclusion to come to and I remember reading those posts and affirming your statements. It was one of the little ways God prepared me for Magdalena. When we learned that she had Down syndrome, I wasn’t shocked and I wasn’t scared. I knew what my response would be because I knew that God is the giver of life and He makes no mistakes. Chromosome anomolies don’t slip past him. Anyway, I could go on and on so I’ll wind down and say this: The world is very selfish and very cruel so we must stand strong and be bold. Amy Julia sets a remarkable example. I am prone to cower and cry when people are mean, but that is not longer an option.

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