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Lance Nixon on Down Syndrome & the Wisdom of God
The Icelandic poet and author Sjón won the Nordic Council’s Literature Prize in 2005 for his novel Skugga-Baldur, translated into English as The Blue Fox, and probably he deserves it. Skugga-Baldur is a quick gallop of a yarn that makes use of the traditional Icelandic theme of the shape-shifter in lean, laconic prose.
There may actually be two shape-shifters at work here—one as a device in the story, and one in the way science is transformed under Sjón’s hands into a benevolent, almost moral force for good that affirms human worth.
Set in Iceland in the nineteenth century, Skugga-Baldur involves a young woman with Down syndrome and two men in her life: Fridrik B. Fridjonsson, a man of science who befriends and values her; and the local minister, the Reverend Baldur Skuggason, who treats her with contempt, as though she’s less than human. As the book ends, Fridjonsson is writing a letter to a friend in Denmark, explaining the sad history of his Down syndrome friend and her treatment at the hands of Skuggason. He signs that letter, “Your affectionate friend and confidant on the limits of ‘the habitable world.’”
Sjón’s name means something like “sight,” but he has overlooked the obvious here: In our day, it is people of faith, not people of science, who are interested in living at what is, in some sense, the limit of the habitable world—that is, side by side with people who have Down syndrome.
This is not to say that there are not scientists who have Down syndrome children or who demonstrate in various ways their care for people with intellectual disabilities. But it is also undeniable that it is science, not religion, that has given society the tools to determine if an unborn child has Down syndrome, with the predictable consequence that most of those fetuses are aborted. A systematic review of abortion rates following a diagnosis of one of five medical conditions (published in 1999 in the journal Prenatal Diagnosis) showed that the rate was highest for unborn babies diagnosed with Down syndrome, over ninety percent of whom are aborted.
One could argue that, as far as modern science and medicine are concerned, the limits of the habitable world lie not in Iceland, or any other geographical place, but in the condition of being “normal,” of having fairly ordinary features and intelligence. The condition of having Down syndrome is alien territory, apparently beyond the limits where people can reasonably be expected to live valuable, productive lives.
To be fair to Sjón, there is another Christian minister in his story who is not as cruel as the Reverend Baldur. Nor are we told in so many words what Fridjonsson thinks about the Christian faith, or that he sees himself in opposition to it. In fact, one could argue that in his compassion for people with intellectual disabilities, he is simply reflecting ancient Christian ideas on the worth of the individual—ideas expressed in the writings of such figures as Tertullian, Origen, and Paul. Perhaps more to the point, Christian thinkers in the present day are generating new texts reaffirming one of the themes in Sjón’s novel—that life in community with disabled people is not only possible, but beautiful and enriching.
The Medicalized View
For example, Baylor University Press in 2007 published the theologian Amos Yong’s book, Theology and Down Syndrome: Reimagining Disability in Late Modernity. It is an important work of theology that takes both the culture and the Church to task for having a too-limited—one might say handicapped—view of people with intellectual disabilities.
Underpinning Yong’s work is the fact that he grew up a child of Assembly of God pastors and has a younger brother with Down syndrome. In his earlier books, Yong made a case for a “pneumatological imagination” enlightened by the Holy Spirit. Here, he suggests that such an imagination is needed to help Christians think more deeply about people with disabilities and their role in creation and in the Church.
He argues that Christian perspectives on disability have colluded with modern medicine—though perhaps unintentionally—to produce a “medicalized” view of disabilities, both physical and intellectual. If he is right, it is this medicalized view that is driving that nine-out-of-ten statistic concerning the number of Down syndrome pregnancies that are aborted. (It is interesting here to note that a 1998 study of Finnish physicians’ opinions of Down syndrome screening revealed that 15 to 21 percent of Finnish doctors thought that current prenatal screening in general is partly based on eugenic thinking.)
Central to the Church
For the Church, the issue is crucial because medicine and law now give families the option of doing away with Down syndrome fetuses before those fetuses are born into their families, communities, and churches. Dietrich Bonhoeffer’s words seem relevant: “The exclusion of the weak and insignificant, the seemingly useless people, from a Christian community may actually mean the exclusion of Christ; in the poor brother Christ is knocking at the door.”
Yong’s view is similar:
My claim is that an inclusive and charismatic ecclesiology informed specifically by the experiences of intellectual disability overturns our assumptions about strength and weakness, about power and incapacity . . . the church recognizes the presence and contributions of the “weak” as central to her identity: the church would no longer be the church apart from those seen as the “weak” of the world.
Building on the work of thinkers such as Henri Nouwen, Jean Vanier, and Wolf Wolfensberger, Yong suggests that people with intellectual disabilities even have a prophetic role in speaking to the prevailing culture. “Rather than assuming that people with disabilities are the foolish, my claim is that their lives embody the wisdom of God in ways that interrogate, critique, and undermine the status quo,” he writes.
It is in this idea of speaking to the culture that there is a parallel with art, literature, and music. George Steiner’s thoughtful book, Real Presences, suggests that responding to meaningful form in a text, an artwork, or a piece of music is essentially a metaphysical and theological act. In the same way, to receive and respond to a person, any person, including one with an intellectual disability, is to respond to a living text whose Author is God.
The key thought here is that even a person with an intellectual disability is meaningful—full of meaning. He is not a laundry list; she is not gibberish to be deleted or erased. But it might require belief in God to make us open our eyes to the possibility that such a person has anything to communicate.
Steiner says concerning the arts: “What I affirm is the intuition that where God’s presence is no longer a tenable supposition, and where his absence is no longer a felt, indeed overwhelming weight, certain dimensions of thought and creativity are no longer attainable.”
Postmodernity—or in Yong’s term, late modernity—fails to appreciate the shattering revelation about human beings that Paul broadcast to the ancient world: that the worth of the individual in Christ transcends and makes irrelevant race, economic status, gender, and, if we extrapolate, intellectual capacity.
It is noteworthy that the pagan Celsus, in what survives of his attack on Christianity, criticizes believers for targeting unimportant people with the Christian message— he mentions “foolish” and “stupid” people, along with slaves, women, and children. He specifically lists wool-workers, cobblers, laundry workers, and illiterates as the sorts of people who are drawn to Christianity. Origen, in his response, simply affirms that the educated and wise man can certainly come to Christ—but so can the man who is ignorant, stupid, uneducated, or childish. Strictly speaking, he notes gently, every bad man is stupid.
More Than Reason
The magazine New Scientist touched on the topic of human worth when it devoted a large section in its July 26, 2008 issue to the topic of reason. The bioethicist Tom Shakespeare suggested that a focus on rationality doesn’t get at the complexity of how we live our lives, since our brains feel as well as think—with vast repercussions for issues such as disability. If people are valued only for their output or performance, then disabled and older people could be viewed as too costly to keep alive—it simply might not be “rational” to keep them around.
Or as Rowan Williams, the archbishop of Canterbury, put it in the same issue of the magazine:
Absolute convictions about human worth . . . are not simply generated by instrumental reason. They have more in common with the pre-modern “rationality” of recognizing oneself and one’s fellow humans as standing together in a common relation with a certain kind of “order,” a way things “just are” in the universe.
The example in Sjón’s novel notwithstanding, postmodern experience suggests that the way to come to terms with human worth in the context of disability is not through medicine or the sciences, but by reading a few ancient texts and a few current theologians. And by reasoning through what Paul said about male and female, slave and free, Scythian and Jew and Greek. It should then be a little easier to decide what is habitable earth.
Lance Nixon is an information editor at South Dakota State University in Brookings, where he and his wife Ruth homeschool their five children.