A number of my friends have children with disabilities. Their problems range from cerebral palsy to Turner’s syndrome to Trisomy 18, which is extremely serious. But I want to focus on one fairly common genetic disability to make my point. I’m referring to Trisomy 21, or Down syndrome.
You may already know that Down is not a disease. It’s a genetic disorder with a variety of symptoms. Therapy can ease the burden of those symptoms, but Down syndrome is permanent. There’s no cure. 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, short neck, thick stature and a small mouth which 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. They can’t give a firm yes or no. 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 now get terminated in the womb. They’re killed because of a flaw in one of their chromosomes — a flaw that’s neither fatal nor contagious, but merely undesirable.
The older a woman gets, the higher her risk of bearing a child with Down syndrome. And so, 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, as my friends know from experience, 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 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 med school professor said. “It’s scandalous and disgraceful… and causing the death of normal babies.” Those words sound almost humane — until we realize that, at least for the med school professor, killing “abnormal” babies like those with Down syndrome is perfectly acceptable.
In practice, medical professionals can now steer an expectant mother toward abortion simply by hinting at a list of the child’s possible defects. And the most debased thing about that kind of pressure is that doctors know better than anyone else how vulnerable a woman can be in hearing potentially tragic news about her unborn baby.
I’m not suggesting that doctors should hold back vital knowledge from parents. Nor should they paint an implausibly upbeat picture of life with a child who has a disability. Facts and resources are crucial in helping adult persons prepare themselves for difficult challenges. But doctors, genetic counselors, and med 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 — often miraculous — 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. Parents grow up very fast. None of my friends who has 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. None of us is perfect. No child is perfect. The real choice in accepting or rejecting a child with special needs is between love and unlove; between courage and cowardice; between trust and fear. That’s the choice we face when it happens in our personal experience. 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 have a lifelong set of health challenges. Some of them are serious. Government help is a mixed bag. Public policy is uneven. Some cities and states, like New York, provide generous aid to the disabled and their families. In many other jurisdictions, though, a bad economy has forced budget cuts. Services for the disabled — who often lack the resources, voting power and lobbyists to defend their interests — 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, the year of my own birth, could expect to live about 25 years. Many spent their entire lives mothballed in public institutions. Today, people with Down syndrome routinely survive into their 50s and 60s. 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 even attended college. Federal law mandates a free and appropriate education for children with special needs through the age of 21. Social Security provides modest monthly support for persons with Down syndrome and other severe disabilities from age 18 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. They believe in the spirit of these beautiful children, because they’ve seen it firsthand. 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, all over the country, now welcome workers with Down syndrome. Parents of these special employees say that having a job, however tedious, and earning a pay check, however small, gives their children pride and purpose. These things are more precious than gold.
The Nobel Peace Prize winner Albert Schweitzer once wrote that, “A man is truly ethical only when he obeys the compulsion to help all life which he is able to assist, and shrinks from injuring anything that lives.” 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 — each one of these persons 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. God will demand an accounting. 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. God will demand an accounting. 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. We can posture, and rationalize our choices, and make alibis with each other all day long — but no excuse for our lack of honesty and zeal will work with the God who made us. 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 only fooling ourselves.
We live in a culture where our marketers and entertainment media compulsively mislead us about the sustainability of youth; the indignity of old age; the avoidance of suffering; the denial of death; the meaning of real beauty; the impermanence of every human love; the dysfunctions of children and family; the silliness of virtue; and the cynicism of religious faith. It’s a culture of fantasy, selfishness and illness that we’ve brought upon ourselves. And we’ve done it by misusing the freedom that other — and greater — generations than our own worked for, bled for and bequeathed to our safe-keeping.
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 he had a caveat. It’s the caveat George Washington implied in his Farewell Address, and Charles Carroll — the only Catholic signer of the Declaration of Independence — mentions in his own writings. In order to work, 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.
This is why the same Father Murray who revered the best ideals of the American experiment could also write that “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.”
Those who serve in the medical profession have a sacred vocation. That vocation of healing comes from Jesus Christ himself. I don’t mean just curing people’s aches and pains, although physical healing is so very important. I mean the kind of healing that comes when a suffering person is understood and loved, and knows that she’s understood and loved. That requires a different kind of medicine. The medicine of patience. The medicine of listening. The medicine of respect.
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. Rick Santorum, the former senator from Pennsylvania, is a friend of mine. Rick has always been Catholic, and always prolife. But it’s one thing to argue in Congress for the sanctity of life. It’s another to prove it by your actions under pressure. Last year Rick’s wife gave birth to a beautiful daughter named Bella. Bella has Trisomy 18. Against the odds, that little girl is still alive and still growing. And she’s surrounded by a family devoted to loving her, 24 hours a day.
Rick and his wife have no illusions about the prospects for their daughter. No one “recovers” from Trisomy 18. But he said to me once that each day he has with Bella makes him a little bit more of a “whole person.” It’s one of God’s ironies that the suffering imperfection brings, can perfect us in the vocation of love. Rick’s daughter is an education in the dignity of every human life; a tutor in the meaning of love — and not just for themselves, but for me as their friend, and for dozens of other people who encounter the Santorum family every week. Another 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 her 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.
The task of the Catholic working in medicine is this: Be the best doctors, nurses and medical professionals you can be. Your skill gives glory to God. But be the best Catholics you can be first. Pour your love for Jesus Christ into the healing you do for every person you serve. By your words and by your actions, be a witness to your colleagues. 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 such a huge task. But St. Paul felt exactly the same way. Redeeming and converting a civilization has already been done once. It can be done again. But we need to understand that God is calling you and me to do it. He chose us. He calls us. He’s waiting, and now we need to answer him.