08 April, 2010

Recommended Reading Number Two: Down Syndrome Prenatal Screening

This is a two-year-old Dave Hingsburger post--I found it when I was messing around, and I really recommend you read it--A Question Along the Way. Actually, this one too: A Story About George. They're both stories related to prenatal screening for Down Syndrome.

It's just an upsetting situation. I mean, we freak out about it happening to us, and we make this analogy, but I can't help but feel we should be doing something about the fact that it's already happening to them. But what can we do?

I don't know many people with Down Syndrome right now. There are three kids with Down Syndrome in Zach and Joe's class--Steven, Anthony, and Deja. Steven seems to have a bunch of sensory issues and he and Deja both get upset a lot; I haven't really gotten to know them. I like Anthony, he has a sneaky smile. About a year ago I knew two older women, Sharon and Emily, who both had Alzheimer's but were about as different as two people can be. Emily struck me as incredibly brave and I still think about her a lot.

I'm going to adopt when I have kids, and I know I'll probably want to adopt a baby with Down Syndrome. I have this whole riff about how I'm going to dress him in really snazzy clothes to make up for all the people who dress their kids with Down Syndrome in jerseys and give them bowl haircuts. But any kid of mine will probably end up dressing like a lumberjack, I'm sure.

In 2007 there was a New York Times article about parents of kids with Down Syndrome who are trying to educate medical professionals and prospective parents about what kids with Down Syndrome are like--which is to say, you know, kids. Perish the thought. My favorite part is when the medical professionals basically say that it would be mean and upsetting to ask people who are pregnant with Down Syndrome fetuses to talk to one of these parent advocacy groups. God forbid they actually have to think about what they're doing; FEEEEEELINGS strike again.

This is the article: Prenatal Test Puts Down Syndrome in Hard Focus. It has some accompanying videos which I haven't finished watching. The article also made me aware of a really boss Newsweek piece by George F. Will, Jon Will's Aptitudes, about his then-21-year-old son:

One must mind one's language when speaking of people like Jon. He does not "suffer from" Down syndrome. It is an affliction, but he is happy-as happy as the Orioles' stumbling start this season will permit. You may well say that being happy is easy now that ESPN exists. Jon would agree. But happiness is a species of talent, for which some people have superior aptitudes...

Because of advancing science and declining morals, there are fewer people like Jon than there should be...

It seems mistaken to say that Jon is less than he would be without Down syndrome. When a child suffers a mentally limiting injury after birth we wonder sadly about what might have been. But a Down person's life never had any other trajectory. Jon was Jon from conception on. He has seen a brother two years younger surpass him in size, get a driver's license and leave for college, and although Jon would be forgiven for shaking his fist at the universe, he has been equable. I believe his serenity is grounded in his sense that he is a complete Jon and that is that.

He also wrote this piece, which is more focused on prenatal screening: Golly, What Did Jon Do?


  1. "I'm a lumberjack and I'm okay.
    I work all night and I sleep all day".

    And I think someone was making the observation that developmentally disabled people in Ohio tend to dress pretty distinctively.

    And we all could stand to get better at cultivating happiness. And the exasperation-resignation arc is common to many of us.

    What agencies are you thinking of? A lot of people are thinking of Reece's Rainbow, especially if they want to go international.

    (There aren't many atheist/agnostic adoption agencies!)

  2. well, I've never even been in a relationship yet, so I'm not exactly thinking about agencies at this point (plus I'm way young). I'm a bit concerned about the ethics of transracial and transnational adoption so I guess that'll be another thing to think about when the time comes.

  3. maybe this is just because I don't know what adoption agencies are like, maybe this is normal, but the Reece's Rainbow blog kind of creeps me out. Kids with disabilities are not kittens.