Cover Story

Life worth living

"Life worth living" Continued...

Issue: "Down Syndrome = Death Sentence?," Jan. 18, 1997

There's a strange schizophrenia within Down Syndrome support groups and lobbying agencies. Peggy began her area's support group when she found another mother with a child with DS in a grocery store. Barbara Curtis has looked online for support. Both moms report that abortion is a blind spot for most.

The National Down Syndrome Congress (DSC), for example, is militant about enforcing "non-pejorative, people-first language" when referring to Down Syndrome (it's "child with Down Syndrome," not "a Down's baby" or a "Down Syndrome child"). That's because what we say shapes how we think, the DSC maintains, and the disabled must be considered persons first.

But the DSC, in the same position paper, says it is "in no way involve[d] [in] the debate over whether a woman should have a legal right to abortion."

"They almost come to blows over wording, but they don't seem to care that babies just like ours are being killed," says Mrs. Curtis. "The groups kept a very low profile during the debates over partial-birth abortion, even though they're talking about kids like ours."

Even more troubling are the responses of mothers who say openly that they would have aborted their babies. "In support groups, people will say oh, they love their children and all, but if they'd known the child had Down Syndrome, they'd have had an abortion," says Mrs. Barker. "When I heard that for the first time, I was horrified."

Observes Mrs. Curtis, "I think this disposal of babies with DS reflects a very materialistic view of children-as though they were commodities or status symbols, not to be loved and enjoyed for who they are.

"I always wonder too, how people who abort their children because they have DS will handle it if their 'perfect' children suddenly-through accident or illness-become less than they wanted. Among my 'normal' children there is an IQ spread of probably 50 points-I have one near-genius and one nowhere-near. I love each of them for who they are. There are many more facets to a human being than intelligence."

But there's good news, too. The glassy-eyed "mongoloids" of the past have proven to be more products of institutions and neglect, rather than victims of DS itself. Early medical attention, and a loving, home environment, have made a difference in how those with DS-and those who love them-live.

"My boys were ages 11 through 17 when Jennifer was born," recounts Mrs. Barker, as she gently leafs through photos of her children as they matured. "After a couple of months, they realized that Jennifer wasn't reaching some of the milestones that infants normally would be reaching. So one night, we sat all four of the boys down, and talked about retardation. If they knew a retarded person, what would they teach them? They came up with a few things, like how to tie shoes. But the most important thing, they agreed, was to teach them how to get to heaven."

John Barker, sitting beside his wife, says that was a "pivotal conversation."

"It took away the pity," he explains. "It gave us all some goals. From that point on, Jennifer wasn't a stress factor, she wasn't an embarrassment to them. She was a part of the family."

Two of their sons are now named as Jennifer's trustees, for when John and Peggy are gone. All four boys now have families and still live in the St. Louis area, and Jennifer is in high demand as their babysitter (and favorite aunt, Jennifer adds modestly).

"We're just now seeing the fruits of the first generation of children with DS who were raised at home, who were given the advantages of early intervention," says Mrs. Curtis. "It's becoming clear to me that my children with DS have a little something extra-maybe it's we who have the disability."

That's something disabilities activist Joni Eareckson Tada stresses in her ministry.

"When it comes to Down Syndrome, that extra chromosome brings with it so much more," she told WORLD. "Joy, enthusiasm, friendship, as well as love. I've never met a family who didn't consider their loved one with Down Syndrome as an asset, not just to the household but to the church and community also. They add something that's lacking elsewhere: unabashed acceptance, simple faith, and no-holds-barred joy. The rest of us can learn from their example."

It's seeing the new face of Down Syndrome that will help stop the conscienceless killing, Mrs. Curtis says. The character with DS on the successful television drama Life Goes On (now out of production) helped; "Corky" was portrayed by an actor with DS.

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