Despite some significant positive changes over the last few decades, persons with Down syndrome can still be treated in many degrading ways in contemporary life, whether through personal animus or social systems like discriminatory employment practices. Perhaps the most egregious examples are in Denmark and Iceland, where close to 100 percent of babies with Down syndrome are aborted. To be clear, Down syndrome is not being eliminated in these countries; persons with Down syndrome are being eliminated. The reasoning behind that trend is not uncommon in our recent discourse in the United States.
Persons with Down syndrome are capable of representing themselves, but as they are rarely given a platform in politics, journalism and other avenues of public discourse, we must strive to listen to, learn from and empower their own voices even as we advocate on their behalf. Hence, I want to direct attention to a subtle problem that can occur even among those who love and support persons with Down syndrome: reducing a human being to their usefulness.
The dignity of human beings must never be reduced to how well they accomplish the ends of other people.
Those who wish to defend the dignity of persons with Down syndrome should avoid the perhaps unintended, but nonetheless consequential, dehumanization process of portraying persons with Down syndrome as “useful.” Yes, persons with Down syndrome can accomplish amazing things vocationally, contribute civically and bring happiness to the lives of others (as evidenced by the new Gerber Baby model with an “infectious smile”). It is important and good to celebrate their contributions and accomplishments, including the witness of Karen Gaffney, Charlotte Fien’s campaign to “prove them wrong” or Frank Stephens’s testimony before the United States Congress (see “I Am a Man With Down Syndrome and My Life Is Worth Living”).
Further, if persons with Down syndrome are as fully human as persons without Down syndrome, everybody can learn from our common humanity what it means to be human. We may be one of the loneliest societies in history,suicide rates have gone up more than 30 percent from 1999 to 2016, and we are entertaining ourselves to death, as Neil Postman prophesied in 1985. As Martin Luther King Jr. noted in his “Paul’s Letter to American Christians”: “America, as I look at you from afar, I wonder whether your moral and spiritual progress has been commensurate with your scientific progress. It seems to me that your moral progress lags behind your scientific progress.” Those whom Jean Vanier refers to as “friends of time” arguably have more to contribute to our exhausting, distracted age than many of us realize.
But the dignity of human beings must never be reduced to how well they accomplish the ends of other people. As Micha Boyett, the mother of a 3-year-old boy with Down syndrome, has argued, “despite the fact that people with Down syndrome are living longer, going to college and achieving more than ever before, a culture that defines human worth by what a person can contribute, produce or enjoy is always going to leave people behind.”
“A culture that defines human worth by what a person can contribute, produce or enjoy is always going to leave people behind.”
Only five years ago a memorial was erected in Berlin commemorating the victims of Aktion T4, the program in Nazi Germany that euthanized 300,000 physically and mentally disabled people deemed burdens “unworthy of living.” Upon its dedication, the German culture minister Monika Graters declared that “every human life is worth living: That is the message sent out from this site.... The ‘T4’ memorial confronts us today with the harrowing Nazi ideology of presuming life can be measured by ‘usefulness.’”
The Catechism of the Catholic Church teaches that “the dignity of the human person is rooted in his creation in the image and likeness of God” and that human dignity transcends every quantifier of worth (Gn 1:26–27; Jas 3:9). In the economy of grace, God’s saving wisdom and power are revealed in the weakness and folly of the cross, choosing the lowly and despised things of the world (1 Cor 1:17–31). As the New Testament scholar John Barclay concludes in his 2015 book Paul and the Gift, “the Christ-event fits no preformed evaluative schema.... Baptism ‘into Christ’ provides a radically new foundation for communities freed from hierarchical systems of distinction, not because of some generalized commitment to ‘equality’ but because of the unconditioned gift of Christ, which undercuts all other reckoning of worth.”
That is, God’s raising a crucified Jew from Nazareth as Messiah and Lord recalibrates human worth, requiring us to have new eyes for our neighbors and especially for the most vulnerable in our midst.
Detractors from Celsus to Nietzsche gaze upon the body of Jesus nailed to the cross and perceive only weakness, folly and the scandal of something useless in a world of power—something that must be eliminated. But those who believe the good news that “he has risen; he is not here” behold on the cross nothing less than the image of the invisible God and prepare for the beatific vision by conforming to “the image of the Son” in cruciform love for others (Rom 8:28).
A world indifferent or hostile toward the claims of faith needs reminding that every last one of us is dust, and to dust each of us, in our utility and inevitable burdensomeness, shall return. Those who cleave for life to a crucified and risen Messiah must welcome and love as our own selves those brothers and sisters with Down syndrome because of their irreducible worth rooted in the image of God as co-heirs of the new creation.