Today’s New York Times

published a feature story called, “Prenatal Test Puts Down Syndrome in Hard Focus.” I learned of it because one of the contributors to Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives,” Nancy Iannone, is quoted, though some of what she spoke about (the book) wasn’t included in the final article.

The story attempts to discuss the larger implications of the recent ACOG guidelines, which I’ll be the first to admit is a sore spot for me. But this quote really stood out:

“It’s a mistake to say ‘your baby is going to be mentally retarded, you should have a pregnancy termination,’ ” said Dr. Allan Nadel, director of prenatal diagnosis at the hospital. “By the same token, I don’t think it’s quite fair to say ‘these are wonderful lovely human beings, you can deal with all of their problems and it’s not that big of a deal.’ We strive to have the proper balance.”

To my way of thinking, this statement perfectly illustrates the problem. Here is a man of medicine, educated and intelligent, who feels no discomfort saying it’s not quite fair to speak of people with Down syndrome as wonderful, lovely human beings, and leave it at that.

My point: if you change the sentence, say, make it about people with purple hair, or children with big noses, or even children with low IQs, you would see clearly the prejudice at work here. I hope that someday, when Avery is old enough to read such sentences, people will no longer be speaking them.


15 thoughts on “Today’s New York Times

  1. The moral atrocity is when people feel that their view of a section of humanity should be destroyed because it affects their sensibilities.

    I feel truly sad for the people who are burdened with such a person as HeroicLife in their lives.

  2. How gorgeous is Trevor Taylor??? That is the main thing for me – not Hannah’s future and funding but OUR future – who do we value in this world and what do we expect of ourselves and others. I too thought the ‘balance’ in the Drs comment was significant but have to agree that you are right about the ‘they’ demonstrating underlying fear and prejudice. Thanks for the link. Little Sohia in the video clip is a bit cute too.

  3. Ohhhh, the ‘THEY’ problem. It is rampant. Did you see Jodi Reimer’s post about referring to her son as part of the ‘Down syndromes’?

    How unfair is it for us as new parents to have all our hopes and dreams dashed through this type of language? I never never ever met two kids with Down syndrome who are alike (except maybe because they are short in stature…:).

    Sometimes it helps to remember that physicians are basically diagnosticians and scientists. Those with an eye on humanity are keepers…

  4. I think balance is key, absolutely, but I think there’s a step missing between “these are wonderful lovely human beings,” and “you can deal with all of their problems and it’s not that big of a deal.” (The very fact of the language choice of “these” shows me we’re dealing with an incomplete understanding of sensitivity issues.)

  5. Hi Jennifer,

    I too didn’t take his comment that way – I understood him as saying that you should celebrate the birth of your child but that you also need to face issues that you wouldn’t normally be addressing with a “typical” child.

    I am the parent of a child with autism (age 10) and I have been approached by moms of newly diagnosed children for advice. I DO tell them what a joy and unique human being my daughter is, and how greatly loved she is, but I also tell them of the challenges we have faced, AND in lots of cases, overcome. But I can’t gloss over the fact that at times she takes every ounce of my energy/patience/finances and leaves none for anything or anyone else. This doesn’t mean I don’t adore her, I do, but the fact of the matter is that this is my reality.

    Just my take though, and I can understand why his comment might be offensive to others. I am off to read the whole article. Susan

  6. Thanks so much for posting this link. This is very timely for us Canadians, after the outrage in our community after Saturday’s Globe and Mail headline about people with Down syndrome (Doomed from birth to death).

    The NYTimes article articulates what I have been trying to say for years. I’m pro-choice – but I’m pro-INFORMED-choice.

    We have been attempting to establish a relationship with our local genetics clinic. The counselors do not want to talk to local Ds associations. Period. We have had NOT ONE referral to speak to parents with a prenatal diagnosis of Down syndrome.

    It is impossible to present a balanced view of what it is like to have a child with Ds without involving parents who are able to present their own stories in non-judgemental, objective ways.

    This is the type of stuff that keeps me awake at night.

  7. Just my perspective, but when I read that sentence, I interpreted it more as ‘yes, these are wonderful lovely human beings, but we don’t want to gloss over the problems they can face.’ Using the word ‘balance’, meaning more education on all sides. Maybe I’m missing your point?

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