Fuzzy Dice
Is having a diseased child, when you know before you even try to get pregnant that you have a pretty good chance of passing on a genetic disease, "god's will" -- or a creepy act of willful, selfish parents?
Bonnie J. Rough writes in the New York Times that "god's will" is how her parents and grandparents rationalized it when they passed on "a disease for a serious disorder" to her brother Luke:
"It's called ectodermal dysplasia," I said. And then I told him everything I knew. I explained that my grandfather and my younger brother had both been born with sparse hair, missing tooth buds (which required them to wear dentures, even as children), and no sweat glands, making hot weather unbearable and even dangerous.I explained that women carry the gene and risk passing it along to their sons. So if we were to have a boy - the son, yes, of an extraordinarily gifted athlete - there would be a good chance he'd be burdened with it. It goes without saying that it's pretty hard to play basketball, or any sport at all, if you can't sweat.
...E.D. is no Down syndrome, no cerebral palsy or cystic fibrosis. It doesn't affect mental capacity or motor skills. It doesn't cap life span. The more we talk about E.D., the littler it tends to sound. My brother, after all, is healthy and strong, getting good grades in his first year of college. He seems to know the name of every kid he sees on his way to class. In poker, he beats the pants off every guy in his hall and spends his winnings on books and food and, this month, in his first suit; he's taking a smart girl with blond, curly hair to the Charity Ball.
But Luke grew up in Seattle, where the weather is kind to him nearly all year, where top prosthodontists are plentiful, and where our father has a job with decent dental benefits. Growing up, I came to see E.D. as a mere inconvenience. Sometimes it brought heavy expenses for our parents, sometimes it caused physical embarrassments for my brother. But it never seemed cataclysmic.
So I fumbled for words recently when I found myself explaining to my brother that Dan and I hope to dodge E.D. I wondered if he was thinking, What's so bad that they'd try so hard to avoid it? As I stammered, Luke interrupted me with a "duh" look. "I wouldn't want your kids to have it," he said.
No, it's not the end of the world to give birth to a kid who will go through life toothless and unable to sweat, but if you know that you have a likelihood of passing this on...maybe you could live without the conceit of squeezing out a replica of yourselves...and adopt? Nope, no dice for Bonnie and her husband. They hope to "dodge" E.D., they say. Yeah, take that chance of stacking the deck against the kid right from the start -- just as long as the toothless little bugger has daddy's beautiful eyes.
Hell-LOW. The ELECK-SHUNS...
If Eric is still reading, let me take this opportunity to annoy him. Kaus quotes a USC grad, links shorn:
"As voting ended, turnout was estimated at 72%. ... [I]t reflects a 28% decline from voting in Iraq'a last election. Furthermore, the unity that marked Iraq's 2002 election has been dissolved by the Bush Administration's divisive policies. The consensus which marked the last election has fallen apart to the point that one party may not even gain a majority."
Bah-dum-PUM! So when viewed next to the Ukraine and all, it's time to acknowledge that democracy's hard-on in the late 20th continues in the 21st, thrilling the oppressed and generating dignity without surcease.
I haven't felt this good since that fucking statue of Saddam came down.
Crid at January 31, 2005 2:12 AM
My mom has a hereditary kidney disease. She wouldn't have had me if she knew there was a 50% chance of me getting it. I don't blame her. If I ever decide that I need to squeeze out a brat, I am getting tested first.
Jess at January 31, 2005 5:31 AM
Right on, Jess. It's so creepy and selfish of these people to do this.
Amy Alkon at January 31, 2005 7:01 AM
My son was born with an intestinal disorder called Hirschsprung's Disease. He had to have two major gut surgeries in his first year of life and lots of difficult care. He also has an autism spectrum disorder - Asperger's Syndrome - that has been no easy thing for him, his mother, nor me. We love our son deeply and struggle every day to raise him the best we can with all the support services that are available.
We aren't having any more children. The risks are too great.
THE Curtis at January 31, 2005 5:28 PM
My mother would have aborted me if the amniocentesis had shown Down's syndrome. Right on, Amy.
M at January 31, 2005 6:29 PM
In another lifetime, I worked with children with spina bifida, which can be just horribly disabling (can't walk, can't pee, can't see, etc). My colleagues and I were always shocked and disappointed when parents would decide to have more children after the spina bifida kid, in spite of the genetic counselor's advice. We were concerned not only because the other kids might also have the condition, but also because these parents would probably be spreading themselves WAY too thin to provide each kid with adequate attention (even HEALTHY kids are high-maintenance, after all).
Spina bifida tends to hit families in low-income communities, so there's a possibility that it might be caused by environmental factors (low-income folks tend to live near the auto shops and dumps). It used to happen more in Irish-American families than others, but the ethnic group with the highest prevalence now is Latino (are Latinos living in the neighborhoods that were once inhabited by Irish immigrants?) All of this is my prelude to asking: Are poor, disadvantaged adults more likely to decide to have kids, despite the risk of disabling health problems, because it somehow compensates for the shittiness of their lives?
Bleeding Heart Lena at February 1, 2005 7:00 PM
my parents would've aborted me had they known i would be a transsexual. they should've adopted an actual girl, as there are too many of them waiting to be adopted right now. curse us both and damn us to hell.
jacki at February 3, 2005 2:08 AM