Eliminating the Disease of Imperfection

Unlike my last post where I woke up feeling the need to unload what was on my heart and mind, this one I needed to sit on for a while; let it percolate . . . or fester if you will. There was an article forwarded to my wife and me the other day entitled, “Down syndrome Rewards Touted as New Test Looms”.  Within the article were results from a recent survey of parents and siblings of people with Ds as well as answers from adults with Ds themselves. In general, it said that the family’s lives had generally improved, their outlook on life was positive—both for themselves and the people with Ds—and even the people with Ds had an overwhelming positive outlook on themselves, their quality of life, and the outlook for their future.

This survey was done as a result of a new medical test being unveiled in the next few months which will be a less invasive, less expensive, earlier diagnostic tool for expectant mothers to see if their child specifically tests positive for Down syndrome. The general gist of the article was, “Hey, it’s not so bad.” And, again in general, I agree.

As most of you know, we have a young daughter with Ds, and in most every way she is amazingly . . . “normal”. There are some hills to climb, some of which I touched on in the last post, but overall she is incredibly independent, fiercely so at times and has a great thirst for knowledge and accomplishment. I would agree with the results of the survey in that, she has greatly improved our outlook and empathy towards life for ourselves as well as people of all abilities.  My son, who’s three years older than our daughter, is simply amazing in his abilities and responsibilities as an older brother, and we see a caring, empathetic side to him that may not have grown to such proportions otherwise. Because of his little sister, and how seriously he takes her nurturing and protection, he’s growing into a great young man.

Yes, there are some amazing positives to life with a child, and sibling, with a disability. It’s not all blue skies and rainbows, but neither is the raising of any child or life with any sibling: There are struggles and difficulties, some of which may be a little different than the “typical” family, but it’s simply life as we know it.

What really caught my attention in the article, and what I spent a lot of time thinking about, were quotes used from another article, “Inspiring portrait of down syndrome at odds with perfect baby pursuit”, written by Bioethicist Art Caplan, PhD. His was a much more pragmatic article on the survey results in light of the upcoming release of this new genetic test. He finishes his article in this way:

Still, the bottom line is that Down syndrome is not uniformly bleak for those who have it nor for their families. This is clearly information that ought to get more play among doctors, genetic counselors, relatives and neighbors — all of whom often weigh in with nothing good at all to say about Down kids to prospective parents.

All that said, I doubt this first-of-its kind information about the quality of life enjoyed by those with Down syndrome and those who know them best will make much difference in the decision to end these pregnancies.

Testing for Down syndrome is moving earlier and earlier in pregnancy and is becoming less invasive and much safer due to new tests that can find and analyze fetal cells in a mother’s blood at nine weeks of pregnancy. The earlier the test, the less difficult the choice of abortion becomes for many.

Add in the fact that ours is a society obsessed with perfection in ourselves and our offspring and, the climate for having kids with Down syndrome, happy though they may be, is not good.

I wanted to be so offended. I wanted to get all up on my self-righteous high horse. I wanted to be upset, hurt, insulted . . . and every other synonym you could think of. Yet, the more I thought about what he was saying, the more I realized he was . . . right.

Granted, his article is a more serious, “scholarly” approach to the reality of life with Ds. But the thrust of his writing focuses on society’s obsession with “perfection”. A quote from Dr. Caplan within the first article says, “Even though society has learned more about what Down syndrome can do, it still turns out that some prospective parents won’t be willing to accept that story,” he says. “I’m not saying it’s not important to tell that story or explore impact on families or what it can mean for the child themselves, but it may not have a huge impact in a society that’s so obsessed with perfect children, competition, better performance and plastic surgery enhancement.”

How true.

How sad.

He concludes that this new test may lead to Ds making a slow disappearance from humanity entirely.  Like small pox.  There’s only one problem.

It’s not a disease.

Down syndrome will never be eradicated. There is a difference between eradication and elimination. There’s a difference between extinction and suppression. There will always be children with Down syndrome. They just may never make it to life outside the womb. (This is a whole other topic I’m not even going to get into here.) If there’s a disease there, it’s not within the child. It’s us. We’re the infected.

When a family who is expecting twins only comes home with one child simply because the other child is “imperfect” (as in the excellent book by Kim Edwards, “The Memory Keeper’s Daughter”, of course), what in this scenario can you cure? There was nothing eradicated here, the child was simply eliminated from the family, and it (the decision) haunted them for the rest of their lives.

How do you eradicate vanity?

(If you know someone facing a diagnosis of Ds in their pregnancy, or if you have more questions on life with family members living with Ds, go to DsConnectionsNw.com)

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