Text im engl. Original (Quelle: downs-syndrom.at /Forum)

By: BEVERLY BECKHAM
Source: Boston Herald
Published: June 25, 2004

It hurts her parents. It hurts me. And it will hurt her someday.
The way our society deals with differences. The way her being, her existence, is a thing that scientists and doctors are working to prevent.

My granddaughter, Lucy, has Down syndrome. This isn't a tragedy. But the world in which we live acts as if it is.

The Boston Globe ran a story Tuesday headlined "Early Warning." It's about first-trimester screenings and about identifying babies with Down syndrome sooner rather than later, so that aborting them will be a less "excruciating" choice for women currently forced to wait until after they feel "the tap-tap of baby kicks."

Babies who have Down syndrome have an extra chromosome which causes them to be delayed. They take longer to walk, talk, catch a ball, read. Many have heart problems. They are shorter than average. They learn differently, and they process differently.

What is so terrible about this?

We fear what we don't know. And few us know anyone with Down syndrome. Until the mid-1960s, most Down babies were institutionalized because doctors deemed them uneducable. (They were wrong.) When Chris Burke, who played the lead in "Life Goes On," was born with Down, doctors warned his mother that she would ruin her family if she took him home. She took him home anyway. And he thrived.

In the 1970s, kids with Down were integrated in regular classrooms. Chris McLean of Walpole was one of them. He's a man now, with an apartment, a job and a brain full of baseball scores. He has family and friends who love him.

Now, in this new century, children with Down are being eliminated. Women are encouraged to abort them. Dr. Allan Nadel, the director of obstetrical ultrasound at Massachusetts General Hospital, told the Globe that he sees the testing as "a good thing scientifically." What's up in the air, he says: "Is it something we're willing to pay for as a society?"

Nadel is, of course, referring to the monetary cost of the tests. Will insurers pay? And will they pay for the abortions that follow?

But Nadel has inadvertently asked a much bigger question. What will we pay as a society for selective engineering, for wanting and demanding only perfect babies?

A baby with Down syndrome is sent to the gas chamber. Haven't we been there? Isn't this genocide?

Mattie Stepanek died Tuesday from dysautonomic mitochondrial myopathy, a genetic disease that impaired his body's major functions. Mattie couldn't walk, stand, eat or breathe on his own. Who would want to live this way?

He did. He loved his life even before his books became bestsellers and Oprah made him a star.

A perfectly healthy baby died of crib death last week. Will science be able to test for this someday and ask a pregnant woman, "Isn't it better to abort now?"

Will science be able to predict that a 1-year-old will develop a brain tumor and be dead before he turns 3, and recommend avoiding all this by choosing abortion?

Nancy and Sheila Nolen have spent most of their lives in wheelchairs. People who don't know them look and look away. But they're happy. Disease affects their bodies, not their souls.

The Globe called bearing a baby with Down syndrome a nightmare.

But having your child get cancer is a nightmare. Having a bike rack fall on your 4 year-old and kill her is a nightmare. Losing your child to a drunken driver is a nightmare.

Having a child with Down is not. It's like having any child. It's a challenge, a joy, a gift, a lot of work - and so much more pleasure.

Talk back to Beverly Beckham at bevbeckham@aol.com.