In a letter to the editor of the New York Times, William Motley, a geneticist of Oxford University, writes, “Fighting Down syndrome with prenatal screening does not ‘border on eugenics.’ It is a ‘search-and-destroy mission’ on the disease, not on a category of citizens . . . . ” Similarly, a pediatric cardiologist writes about Down syndrome: “Tremendous social, medical and monetary burdens are inevitable parts of this disorder . . . these (prenatal) tests are invaluable, should be made available to all, and may help individuals possibly avoid a very significant life-changing illness.” Much as Mr. Motley might want to claim that prenatal screening is not about a category of citizens, the practical result of what he advises is indeed to eliminate an entire group of persons.
In a recent collection of essays titled Theology, Disability, and the New Genetics, Hans Reinders states a countervailing claim: “Life is good as it is .” Life is good as it is. It sounds simple. Theologically, it rings true. And yet the vast majority of individuals in our culture choose to terminate a pregnancy if they learn that their baby will be born with a disability. Why? If life is good as it is, why is it considered good by many in our culture to ensure that children with disabilities are not born at all?
As Reinders writes, “Many people with disabilities resulting from genetic disorders experience their own lives as good.” I can certainly affirm this statement in the case of our daughter Penny, who has Down syndrome. Penny is nearing her third birthday, as she would proudly tell anyone who cares to ask. Her days consist of playing with blocks and balls and running to the playground, of reading books, of entertaining those around her with proclamations like, “Uh-oh, spaghettios!” and “Okey-doke!” She loves her little brother “Wilwum.” She loves bagels and music and school. In general terms, we aren’t concerned about her health or development, and neither is she. Her current challenges include learning to swallow her drool instead of letting it dribble down her chin and learning to tell us before she needs to use the potty. In other words, there is very little that is “not good” about Penny’s life.
But then I think about the lives of some other children that I know, and the picture becomes more complicated. I think about Ajit, a young man in our church, who is afflicted with grand mal seizures nearly every day. I think about Lucy Rose, who died three hours after she was born due to anencephaly. Or Susan, a little girl with Trisomy 18, a genetic condition that, in the words of her doctor, “cannot sustain life.” She died when she was fourteen months old. And when I think about these children, and their families, it becomes more difficult for me to affirm categorically that life is good as it is.
Disability and suffering are not one and the same, and yet a theological response to genetic testing and disability must affirm life’s goodness while also taking into account the real pain experienced by families and individuals with disabilities. To attest that every life is good as it is will necessarily involve a critique of the cultural assumptions about disability and of the cultural assumptions about what constitutes a good life. In order both to expose our culture’s biases toward disability and to show compassion for children who suffer as a result of genetic abnormalities, we must both define and embody a good life that is based upon the character of God in Jesus Christ, God-with-us even in the midst of suffering.
Much of the alienation and stigma people with disabilities experience is a product of societal norms rather than of problems intrinsic to the disabilities themselves. Take the mainstream media. The New York Times reports: “The 5,500 children born with Down syndrome each year in the United States suffer from mild to moderate mental retardation, are at high risk for congenital heart defects and a variety of other medical problems, and have an average life expectancy of 49.” Suffer . High risk . Defects . Problems . This reporter goes on to write, “One doctor asked about studies suggesting there is a higher risk of early-onset Alzheimer’s disease in people with Down syndrome, potentially saddling parents with another care-taking burden as they themselves age.” Again, the language is telling¯ saddling, another burden . Or look at Time Magazine, which coined a new word a few years ago: celebutard, short for celebrity retard. Or take Dreamworks Pictures, producers of Tropic Thunder, a Ben Stiller comedy that raised concerns within the disability community for its use of the word retarded and its portrayal of individuals with disabilities. This aspect of the film was widely defended by the press, and the film has earned over $170 million worldwide.
The medical establishment demonstrates a similar prejudice. Penny, according to technical language, was born with a birth “defect” or “abnormality.” And she was presumed to be unhealthy, even though we left the hospital on time, two days after she was born. She had scored an eight out of ten on her Apgar test, an echocardiogram indicated that her heart was sound, and she had no other medical issues. Nonetheless, we took with us a list of all the things that might go wrong, including leukemia, celiac disease, thyroid problems, crooked teeth, and spinal instability. None of those, by the way, were even potential immediate concerns. If our social perceptions changed, much of the supposed suffering that comes from disability would be eliminated.
The bias our culture displays towards those with disabilities has its roots in our understanding of what it means to live a good life. Genesis 1:3 offers us a counter-narrative. Here we find a picture of human community and diversity. For Adam, it is “not good” to be alone, and thus Eve comes on the scene. Eve is at the same time like Adam and different from him. They need one another. Similarly, when we trust that life is a gift from God, we begin to see the interdependence of human beings, all human beings, upon one another.
The good life that Reinders describes is a life of giving and receiving. In contrast, our culture centers around commerce, around buying and selling. We even see children as commodities that can be examined in utero with the choice to purchase or reject. But if a good life is about giving and receiving in community, a person with a disability is just as valuable as anyone else.
Our culture also values life without suffering. And since we often conflate disability with suffering, that means we tend to value life when it is life without disability. But many individuals with disabilities experience no more or less suffering than the rest of the population. And, again, much of the suffering experienced by individuals with disabilities is a byproduct of societal bias, not of anything intrinsic to the disability itself. With that said, there are many children and adults with disabilities who suffer, and Christians must respond to the raw and honest concern of parents that to bring a child with a disability into the world will bring suffering upon that child. It doesn’t always happen, but when it does, what is our response?
In order to affirm that life is good as it is, even when that life includes suffering, we must turn our attention to the character of God as revealed in Jesus Christ. Just as the God of the Old Testament promises the people of Israel time and again, “I am with you,” in the midst of the fire, of captivity, of wandering in the dessert, of exile to Babylon, so Jesus Christ comes as Emmanuel, God with us . But Jesus’ life demonstrates the power not only of God with us, consoling and comforting in the midst of suffering, but of God who takes our suffering upon himself through death on a cross. This is a God who suffers with us, who suffers for us, and who promises even to redeem the suffering we experience. Suffering is not good in and of itself, and yet God can bring good from it. In addition, we must acknowledge Christ as healer, whether that healing comes through modern medicine or through miracles. We must hold out hope for healing to those who suffer.
On a more practical level, it is through proclamation and embodiment of the good life that our culture will be transformed. For the church, proclamation includes preaching and teaching. It also includes advocacy, in the public and political realm, advocacy that can lead to measures such as the Kennedy Brownback Bill that recently mandated all doctors provide accurate and up-to-date information when delivering a prenatal diagnosis. But most importantly, we must live the good life in community, in communion, with those with disabilities. This includes befriending those who are physically or mentally disabled, and incorporating those with disabilities into the fabric of everyday life.
My family lives on the campus of a boarding school, in a dorm with thirty high-school boys. All of them see Penny, a little girl with Down syndrome, nearly every day. Since her birth, these boys have raised thousands of dollars for the Children’s Hospital of Philadelphia in honor of Penny. They have talked to us about how their perceptions of “the retarded” have changed because of her presence among them. Similarly, a friend of mine who recently had a baby told me that Penny changed her approach to the pregnancy. This friend is in her late thirties, and she’s had a number of complications with pregnancies in the past. She told me that this time, she decided to have ultrasounds to look for heart and brain defects, but she declined an amniocentesis. “I realized,” she said, “all I needed to know was the health of the baby. I didn’t need to know the chromosomal makeup.” A lived witness in a community can change people over time.
There is no way to verify this scientifically, but many of us who have children with disabilities are convinced that though they may be less able to perform on a standardized test or run a mile, they are particularly able when it comes to the life of the spirit. My friend Alessandra, mother to Kiera, wrote me recently to say, “When I found out about Kiera [having Down syndrome] I thought that was God’s way to give me a chance to give back for all the blessings I received from him so far. I then realized that Kiera was the biggest blessing and was Jesus revealing himself to me all over again.” My friend Madhu, whose son Ajit I mentioned earlier because he has seizures on a daily basis, tells me that though his vocabulary is limited, in the middle of the night, Ajit sings Alleluia . And Penny too, has taught us about God, not only because God has worked through her to change us, but because of the simple faith and love she demonstrates when she asks to pray for her baby brother, or when she asks to see Jesus, or when she reads the story of the Good Samaritan and cries out, “Me help! Me help!” when she sees the man in need.
I don’t mean to generalize about people with disabilities or imply that they don’t have bad days or get cranky or cause just as much trouble for their parents as any typical child. But knowing that Jesus works through exactly those who are overlooked by the rest of us, the poor and the meek and the pure in heart, I suspect that the Spirit finds many willing vessels among those we would call disabled.
Life is good as it is, and we must testify to the goodness of every human life through a counter-cultural narrative based upon God’s goodness. Once we take into account the real concern for people with disabilities who suffer, we can then bear witness, through word and deed, to the power of life’s goodness under the providential hand of a loving God.
Amy Julia Becker, a master-of-divinity candidate at Princeton Theological Seminary, is a writer and mother in Lawrenceville, New Jersey. She recently published her first book, Penelope Ayers.