Conscience, Courage, and Children With Down Syndrome

From the First Things blog, available in full at http://www.firstthings.com/onthesquare/2009/10/conscience44-courage44-and-children-with-down-syndrome

Oct 22, 2009
Charles J. Chaput

What kind of people are we becoming, and what we can do about it?

A number of my friends have children with disabilities. Their problems range from cerebral palsy to Turner’s syndrome to Trisomy 18. But I want to focus on one fairly common genetic disability to make my point. I’m referring to Trisomy 21, or Down syndrome.

Down syndrome is not a disease. It’s a genetic disorder with a variety of symptoms.

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Currently, about 5,000 children with Down syndrome are born in the United States each year. They join a national Down syndrome population of roughly 400,000 persons. But that population may soon dwindle. And the reason why it may decline illustrates, in a vivid way, a struggle within the American soul. That struggle will shape the character of our society in the decades to come.

Prenatal testing can now detect up to 95 percent of pregnancies with a strong risk of Down syndrome. The tests aren’t conclusive, but they’re pretty good. And the results of those tests are brutally practical. Studies show that more than 80 percent of unborn babies diagnosed with Down syndrome are now terminated in the womb. They’re killed because of a flaw in one of their chromosomes—a flaw that’s neither fatal nor contagious, merely undesirable.

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Parents of children with special needs, special education teachers and therapists, and pediatricians who have treated children with disabilities often have a hugely life-affirming perspective. Unlike prenatal caregivers, these professionals have direct knowledge of persons with special needs. They know their potential. They’ve seen their accomplishments. They can testify to the benefits of parental love and faith. Expectant parents deserve to know that a child with Down syndrome can love, laugh, learn, work, feel hope and excitement, make friends, and create joy for others. These things are beautiful precisely because they transcend what we expect. They witness to the truth that every child with special needs has a value that matters eternally.

Raising a child with Down syndrome can be hard. None of my friends who have a daughter or son with a serious disability is melodramatic, or self-conscious, or even especially pious about it. They speak about their special child with an unsentimental realism. It’s a realism flowing out of love—real love, the kind that courses its way through fear and suffering to a decision, finally, to surround the child with their heart and trust in the goodness of God. And that decision to trust, of course, demands not just real love, but also real courage.

The real choice in accepting or rejecting a child with special needs is never between some imaginary perfection or imperfection. The real choice is between love and unlove, between courage and cowardice, between trust and fear. And that’s the choice we face as a society in deciding which human lives we will treat as valuable, and which we will not.

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I am the father of a special needs child, who has a rare chromosomal abnormality knowns as Rubinstein-Taybi Syndrome. I have always opposed abortion for any reason, but I now have personal reasons to oppose the abortion of unborn babies with special needs. We are at a frightening place, having hardened our hearts to the point that we murder our own children when they need us most.

May God have mercy.

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