My daughter Penny is in the fifth grade. She just went away for the weekend with her best friend and her family for the first time. She wears glasses. She feels nervous around dogs. She loves reading and spelling and recently asked her Prayer Buddy at church to pray for her about learning how to add fractions. She is responsible, smart, talented, and loving. She also has Down syndrome.
Today is World Down Syndrome Day, a day to celebrate the approximately six million children and adults around the globe who have Down syndrome (also known as trisomy 21). Any website or book devoted to this topic lists a set of physical features, medical concerns, and potential disabilities common among people with Down syndrome, but it is hard for me to think in these generalities anymore. Rather, I am drawn to portraits of people with Down syndrome that demonstrate their distinctive traits. I love reading stories about their different interests, abilities, and friendships. And yet most people in our world still see Down syndrome as something both monolithic and negative—a condition to be eradicated rather than a group of individuals to be welcomed and loved.
Historically, people with Down syndrome were pushed to the margins of our society through institutionalization. In more recent years, with the advent of prenatal screening tests that indicate the likelihood of trisomy 21 in fetuses, more and more women have chosen to pursue those tests and, in many cases, to terminate pregnancies accordingly. Although the number is tricky to calculate, in the United States, the rate of babies aborted with Down syndrome is around 50 percent and is likely to rise with the increased use of these prenatal tests.
A similar story can be told in developing nations around the globe. According to recent reports in Iceland, not one child was born with Down syndrome between 2008 and 2012. In Denmark, with universal access to prenatal screening, one source estimates that 98 percent of the babies conceived with Down syndrome are aborted. The statements by public officials and medical providers throughout Europe overwhelmingly argue that people with Down syndrome cost too much and pose a burden to society.
This argument relies on utilitarian logic: If babies with Down syndrome are not going to be economically productive, it follows that they’re not worth bringing into the world. Moreover, if babies with Down syndrome are going to suffer, they should be aborted. As Jean Vanier, founder of the L’Arche community, writes, “Our desire to alleviate perceived suffering in the name of compassion easily leads to the destruction of people whom God has created and loves beyond all things.”
It’s tempting to respond in kind by using this same utilitarian logic. I can detail the accomplishments of people with Down syndrome (including my daughter) and in so doing argue that women should bring babies with Down syndrome into the world because they will bring us happiness, foster friendship and community, and contribute to the workforce. But the terms of the argument are the problem. Utilitarianism presupposes that our accomplishments determine our worth. It relies on a consumer culture of buying and selling—of putting a monetary value on human beings—rather than on a kingdom culture of giving and receiving, where grace and love are the bedrock truths of the universe.
Even though I am the mother of a child with Down syndrome, I often find myself defending my daughter’s skills and abilities rather than her inherent worth. In so doing, I play into the idea that I, too, am only worthy of life because I contribute something productive in the world. I devalue myself and everyone else around me when I start to see human beings as products to be measured.
What harm have we done to the image of God within each of us by placing a price tag on human life? And what’s the alternative model?
In a recent NPR interview with host Krista Tippett, the Irish poet Michael Longley made the statement, “Poetry is useless.” He waited a few beats before he explained, “Poetry is without use, but it is valuable.” As I listened, my mind moved from poetry to people. I thought of the many individuals who do not contribute in any measurable economic way to our society. Useless, others might say. A burden. A drain. And from a purely material, utilitarian way of thinking, they might be right. But anyone who believes in a purposeful Creator God would say that many human beings are indeed “useless,” and yet those same human beings bear inestimable value. In that way, people with disabilities are indeed like the words of a poem: Although they might not provide or produce clothing or shelter or food, they nonetheless convey beauty and meaning, truth and transcendence. They teach us what it means to be human.
While the Judeo-Christian tradition provides the foundation for our understanding of human dignity and ethics, Christian history also offers models of how these ethics might inform everyday life. There are many examples of countercultural, intentional communities like L’Arche, where people with intellectual disabilities and typical adults live together. More contemporary efforts include Friendship House—a new movement in which seminarians live with adults with intellectual disabilities. These communities and many others bear witness to the value of understanding our common humanity through relationships of mutual and reciprocal giving and receiving.
Of course, not everyone is called to live in an intentional community among people with intellectual disabilities. But we are all called to recognize the inherent worth of every human being we encounter and to live in a way that honors and fosters the image of God in others. Those in power, especially, need to adopt a posture of humility and vulnerability in order to be open to the gifts of those considered weak and useless in the eyes of the world. As Paul wrote to the church in Corinth, “God chose the foolish things of the world to shame the wise; God chose the weak things of the world to shame the strong” (1 Cor. 1:27).
“The mystery of people with disabilities is that they long for authentic and loving relationships more than for power,” writes Vanier in Living Gently in a Violent World. “They are not obsessed with being well-situated in a group that offers acclaim and promotion. They are crying out for what matters most: love. And God hears their cry because in some way they respond to the cry of God, which is to give love.”
On World Down Syndrome Day, I will not proclaim the usefulness of my daughter and the millions of other men and women with intellectual disabilities around the globe. But I will proclaim their value. In so doing, I proclaim the value of every human being created in the image of God.
Amy Julia Becker is the author of Small Talk: Learning From My Children About What Matters Most (Zondervan) and A Good and Perfect Gift: Faith, Expectations and a Little Girl Named Penny (Bethany House). She lives with her husband, Peter, and three children in western Connecticut.