So much of Archbishop Chaput's article, posted below, is as true for the UK as for the US.
The highlights are mine, phrases or sentences that particularly resonate with me, as a Catholic mother of children with disabilities, including Down Syndrome.
"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. People with Down syndrome have mild to moderate developmental delays. They have low to middling cognitive function. They also tend to have a uniquely Down syndrome “look”—a flat facial profile, almond-shaped eyes, a small nose, a short neck, thick stature, and a small mouth that often causes the tongue to protrude and interferes with clear speech. People with Down syndrome also tend to have low muscle tone. This can affect their posture, breathing, and speech.
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.
The older a woman gets, the higher her risk of bearing a child with Down syndrome. In medical offices around the country, pregnant women now hear from doctors or genetic counselors that their baby has “an increased likelihood” of Down syndrome based on one or more prenatal tests. Some doctors deliver this information with sensitivity and great support for the woman. But too many others seem more concerned about avoiding lawsuits, or managing costs, or even, in a few ugly cases, cleaning up the gene pool.
We’re witnessing a kind of
schizophrenia in our culture’s conscience. In Britain, the
Guardian newspaper recently ran an article lamenting the faultiness of some of the prenatal tests that screen for Down syndrome. Women who receive positive results, the article noted, often demand an additional test, amniocentesis, which has a greater risk of miscarriage. Doctors quoted in the story complained about the high number of false positives for Down syndrome.
“The result of [these false positives] is that babies are dying completely unnecessarily,” one medical school professor said. “It’s scandalous and disgraceful . . . and causing the death of normal babies.” These words sound almost humane until we realize that, at least for that professor, killing “abnormal” babies such as those with Down syndrome is perfectly acceptable.
In practice, medical professionals now can steer an expectant mother toward abortion simply by hinting at a list of the child’s possible defects. The most debased thing about this kind of pressure is that doctors know better than anyone else how vulnerable a woman can be when she hears potentially tragic news about her unborn baby.
I’m not suggesting that doctors should hold back vital knowledge from parents. Nor should doctors paint an implausibly upbeat picture of life with a child who has disabilities. But doctors, genetic counselors, and medical school professors should have on staff—or at least on speed dial—experts of a different sort.
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.
Nearly 50 percent of babies with Down syndrome are born with some sort of heart defect. Most face a lifelong set of health challenges. Government help is a mixed bag, and public policy is uneven. Some cities and states, like New York, provide generous aid to the disabled and their families. In many other jurisdictions, however, a bad economy has forced budget cuts. Services for the disabled have shrunk. In still other places, the law mandates good support and care, but lawmakers neglect their funding obligations, and no one holds them accountable. The vulgar economic fact about the disabled is that, in purely utilitarian terms, they rarely seem worth the investment.
That’s the bad news. But there’s also good news. Ironically, for those persons with Down syndrome who
do make it out of the womb, life is better than at any time in our nation’s history. A baby with Down syndrome born in 1944 could expect to live about twenty-five years. Today, people with Down syndrome routinely survive into their fifties and sixties. Most can enjoy happy, productive lives. Most live with their families or share group homes with modified supervision and some measure of personal autonomy. Many hold steady jobs in the workplace. Some marry. A few have attended college. Federal law mandates a free and appropriate education for children with special needs through the age of twenty-one. Social Security provides modest monthly support for persons with Down syndrome and other severe disabilities from age eighteen throughout their lives. These are huge blessings.
And, just as some people resent the imperfection, the inconvenience, and the expense of persons with disabilities,
others see in them an invitation to be healed of their own sins and failures by learning how to love. About 200 families in this country are now waiting to adopt children with Down syndrome. Many of these families already have, or know, a child with special needs. A Maryland-based organization, Reece’s Rainbow, helps arrange international adoptions of children with Down syndrome. The late Eunice Shriver spent much of her life working to advance the dignity of children with Down syndrome and other disabilities. Last September, the Anna and John J. Sie Foundation committed $34 million to the University of Colorado to focus on improving the medical conditions faced by those with Down syndrome. And many businesses now welcome workers with Down syndrome. Having a job and earning a paycheck gives these special employees pride and purpose. These things are more precious than gold.
Every child with Down syndrome, every adult with special needs—in fact, every unwanted unborn child, every person who is poor, weak, abandoned, or homeless—is an icon of God’s face and a vessel of his love. How we treat these persons—
whether we revere them and welcome them or throw them away in distaste—shows what we really believe about human dignity, both as individuals and as a nation.
The American Jesuit scholar Father John Courtney Murray once said that “Anyone who really believes in God must set God, and the truth of God, above all other considerations.” Here’s what that means.
Catholic public officials who take God seriously cannot support laws that attack human dignity without lying to themselves, misleading others, and abusing the faith of their fellow Catholics. Catholic doctors who take God seriously cannot do procedures, prescribe drugs, or support health policies that attack the sanctity of unborn children or the elderly, or that undermine the dignity of human sexuality and the family. And Catholic citizens who take God seriously cannot claim to love their Church and then ignore her counsel on vital public issues that shape our nation’s life. God will demand an accounting. As individuals, we can claim to be or believe whatever we want. But God knows our hearts better than we do. If we don’t conform our hearts and actions to the faith we claim to believe, we’re simply fooling ourselves.
We live in a culture in which marketers and media
compulsively mislead us about the avoidance of suffering, the denial of death, the silliness of virtue, and the cynicism of religious faith. It’s a culture of fantasy, selfishness, and illness that we’ve brought on ourselves. And we’ve done it by misusing the freedom that other generations worked for, bled for, and bequeathed to us for safekeeping.
What have we done with that freedom? In whose service do we use it now?
John Courtney Murray is most often remembered for his work at Vatican II on the issue of religious liberty and for his great defense of American democracy in his book
We Hold These Truths. Murray believed deeply in the ideas and moral principles of the American experiment. He saw in the roots of the American Revolution the unique conditions for a mature people to exercise their freedom through intelligent public discourse, mutual cooperation, and laws inspired by right moral character. He argued that, at its best, American democracy is not only compatible with the Catholic faith but congenial to it.
But Murray had a caveat. It’s the caveat that George Washington implied in his farewell address and that Charles Carroll—the only Catholic signer of the Declaration of Independence—mentioned in his own writings. America depends as a nation on a moral people shaped by their religious faith and, in a particular way, by the Christian faith. Without that living faith animating its people and informing its public life, America becomes something alien and hostile to the very ideals it was founded on. As his caveat, Murray wrote this:
Our American culture, as it exists, is actually the quintessence of all that is decadent in the culture of the Western Christian world. It would seem to be erected on the triple denial that has corrupted Western culture at its roots: the denial of metaphysical reality, of the primacy of the spiritual over the material, [and] of the social over the individual . . . Its most striking characteristic is its profound materialism . . . It has given citizens everything to live for and nothing to die for. And its achievement may be summed up thus: It has gained a continent and lost its own soul.
Over the years, I’ve learned that when God takes something away from a person, he gives back some other gift that’s equally precious. A friend of mine has a son with Down syndrome, and she calls him a “sniffer of souls.” He may have an IQ of 47, and he’ll never read
The Brothers Karamazov, but he has a piercingly quick sense of the heart of the people he meets. He knows when he’s loved—and he knows when he’s not. Ultimately, we’re all like my friend’s son.
We hunger for people to confirm that we have meaning by showing us love. We need that love. And we suffer when that love is withheld.
We need to be the best people we can be. And, first, we need to be the best
Catholics we can be. By our words and by our actions, we need to be witnesses. So: Speak up for what you believe. Love the Church. Defend her teaching. Trust in God. Believe in the Gospel.
And don’t be afraid. Fear is beneath your dignity as sons and daughters of the God of life. Changing the course of American culture seems like a huge task. But St. Paul felt exactly the same way. Redeeming and converting a civilization has been done once. It can be done again. But we need to understand that God is calling us to do it. He chose us. He calls us. He’s waiting, and now we need to answer him."
Charles J. Chaput,
O.F.M Cap., is the archbishop of Denver.
Thanks to First things
