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Being Human on World Down Syndrome Day

March 21st, 2024 | 9 min read

By Joshua Heavin

Popular discourse about Down Syndrome is inexorably tied to abortion debates, and understandably so. In Australia, non-invasive pre-natal testing for Down Syndrome was celebrated in 2017 on 60 Minutes as making possible a world without Down Syndrome. Some places, such as Iceland and Denmark, have a 97 and 100 percent rate of abortions after pre-natal screening shows that an unborn child has Down Syndrome. Writing in the Washington Post in 2018, conservative George F. Will called this “genocide,” before noting that the United States of America is not too far behind, with 67 percent of pregnancies ending in abortion after pre-natal screening indicated the unborn child had Down Syndrome.

Gentleness, mercy, and a ministry of quiet presence is apt for a young couple who have suddenly realized their unborn child has Down Syndrome — especially as they ponder the unknown material, emotional, physical,  intellectual, and existential challenges that might lie ahead of them. In probably most instances in places such as Iceland, scared expectant parents sorrowfully make this individual decision in consultation with their healthcare providers. Hopefully, the church of Jesus Christ proves for such people a hospitable family of brothers and sisters called into existence through the Word and Sacraments; would that the church today so worked with the state to secure a social safety net — such as paid family leave and other pro-natalist policies — that economic motivations to end such pregnancies were significantly eased or mitigated altogether, recovering the patristic legacy of taking in exposed infants. But alongside mercy, the church must also speak with clarity and say “No” to the crushing totality of individual decisions that are cumulatively creating an avalanche so catastrophic as to systematically eliminate all people with Down Syndrome in some parts of the world.  

Yet today a routine feature of pro-life discourse celebrates the accomplishments of people with Down Syndrome, and rightly so. It is indeed praiseworthy that Mar Galcerán recently became Spain’s first parliamentarian with Down Syndrome. Nothing should be taken away from stories such as Kayleigh Williamson recently becoming the first person with Down Syndrome to complete the NYC marathon.

But their laudable accomplishments are not what make their lives worth living.

Moreover, there are also a significant number of people with Down Syndrome and a great variety of other people with physical and intellectual disabilities who will never achieve things that society recognizes. For some, simply learning how to feed, clothe, groom, and care for oneself physically are a lifetime’s challenge. People who do not have significant intellectual and physical disabilities often find it challenging to acquire a quality education, find and hold a job with a decent income, and cultivate relationships with friends and family; each of these things can prove that much more challenging for people with Down Syndrome and similar disabilities.

But I am concerned that amidst this standard discourse about Down Syndrome, so heavily determined by abortion-related policy, that other more generative lines of inquiry are often precluded. For example, we might ask, if people with Down Syndrome are just as human as you and I, how should we contemplate the mystery of what it means to be a human being?

Being a human being is confusing for many reasons. “What is your life?” asks James the Just, “For you are a mist that appears for a little time and then vanishes” (James 4:14). In Antiquity, Plato contemplated the mystery of how body and soul relate in book ten of The Republic (4th c. BC); the great Medieval Jewish philosopher Moses Maimonides contemplated how precisely humanity is the image of God, according to Genesis, in Part I of his Guide for the Perplexed (AD 1190). But answering the psalmist’s question, “what is man?” (Ps. 8:4) surely involves further complexity and challenges in modernity. Though often there are pre-modern analogues to the ideas of Rousseau, Darwin,  Nietzsche, Marx, Freud and many others, their overwhelming influence on contemporary Western culture is so pervasive that it is actively challenging for many of us to alternatively imagine what it might mean to be human, as Carl Trueman sketches in his The Rise and Triumph of the Modern Self.

Surely one of the greatest insights into human psychology from the annals of Christian letters are the opening words to John Calvin’s 1559 Institutes of the Christian Religion, that “Our wisdom, in so far as it ought to be deemed true and solid Wisdom, consists almost entirely of two parts: the knowledge of God and of ourselves. But as these are connected together by many ties, it is not easy to determine which of the two precedes and gives birth to the other.” Calvin’s maxim is liable to misunderstanding after the psychological and therapeutic shifts in modern self-consciousness in the twentieth and twenty-first centuries. Calvin is not, for example, commending bare self-knowledge, self-discovery, or self-care as tantamount to or coterminous with knowledge of God.

Rather, Calvin’s logic holds that when we apprehend God rightly in praise, we simultaneously will rightly apprehend ourselves as creatures; a corollary is that as we misapprehend God, we simultaneously have a distorted and idolatrous view of the self and all else in relation to God. Our knowledge of God and analogous knowledge of self are related but neither identical with one another nor separable from one another; they thus inextricably linked, for better or for worse.

Intellectual, emotional, and physical disabilities are no more a barrier to knowing the infinite and Holy Trinity than our finitude, mortality, and sinfulness. As the Holy Spirit savingly unites us with Christ in his death and resurrection, all that was ours became Christ’s, and all that is his becomes ours, such that we are enfolded into the Son’s address to God as “Abba, Father.” But might people with significant intellectual and physical disabilities perhaps be entrusted with particular giftings that should calibrate whatever it means to be human beings? Manifold problems can emerge when attempting to answer such questions. Perhaps the foremost danger is objectifying particular human beings with very real challenges, as if their very being was merely illustrative of some general principle.

Even so, arguably one of the key giftings which people with intellectual and emotional disabilities contribute to our understanding of what it means to be human is a different orientation to time than many of us live under in the post-Industrial West. It is not that people with Down Syndrome universally disregard punctuality. But the pace of life lived by most people with Down Syndrome is one in which timeliness is not a foremost priority, in contrast to the way the vast majority of the post-Industrial West lives under the pressures of the clock, as if our minds were computers and our bodies were robots.

When life is lived alongside people who relate to time differently than the restlessness stoked by the attention-economy or the tyranny of technique in modern society, “the imperative to optimize all areas of human experience for efficiency,” new horizons unfold. Stanley Hauerwas noted this once while commenting on disability and  theological education: “One of the things we don’t do well in most seminaries today is formation. We educate but we don’t form. And having people studying theology and having to learn to live with someone who may take an hour and half to eat is a very good thing.”

Extracting oneself from the frenzied pace of modern life might seem to only be a possibility for the very wealthy; for many people, the frenetic pace of life is less a self-conscious choice than the happenstance of a gig economy, or trying to simultaneously raise children while both parents work at least one full-time job each. In some sense everyone who is in Christ is called to live at a particular pace, that of “godspeed,” that is, the speed of “the three mile per hour God.” But after the widespread demise of monasticism, we no longer live with officially sanctioned designations between those called to “the active life” and those called to “the contemplative life.” Even those of us who are ordained clergy, set apart for holy orders, must actively prioritize and safeguard adequate time to interceding for the church and the world in prayer, let alone for contemplative, ascetic, and/or devotional practices. Many of us have "divided" lives as the Apostle Paul says in 1 Corinthians 7:34, caught between earthly and heavenly obligations.

But perhaps in a way analogous to how contemplative vocations once functioned as a sign of the kingdom of God amidst and alongside those called to active vocations, our brothers and sisters in Christ who have Down Syndrome, by the specific way they tend to relate to time, might prove a sign of the coming kingdom of God that has already broken into our midst. That will not happen if we do not know one another, living life among or alongside one another, nor if the church is not a beacon of both hospitality and opportunity for people with intellectual and emotional disabilities amidst an often hostile or callous “throwaway culture,” not merely extending welcome and inclusion, but meaningful opportunities for service and to contribute the gifts God has given to every member of the Body of Christ.

So much of life in the Modern West is distorted by digital technology, which not only distracts us during the vast numbers of hours we stare at screens, but also create distracted habits of thought that continue when we temporarily put our screens down. Artificial Intelligence might soon be better than human beings at many things, from writing to creating art, to mathematics and generating scientific discoveries. But something a computer can never do is know God as his image bearer, and be known by God through our union with Christ, especially in the sacramental life of the church and communion of saints. Our brothers and sisters with Down Syndrome, by the pace at which they both thrive and struggle through life, offer a counter-testimony against our hurried delusions. Both functionally and aspirationally, with whom, or with what, do we have more in common: a brother or sister who attentively exerts his or herself fully to eat a small meal for an hour and a half, after which a full bath is necessary, all of which is so exhausting that it requires a nap afterwards — or the artificial forms of intelligence emerging in digital technology? As brain-mapping rapidly advances, answering that question might prove more complicated than ever before for many people.

Notably, when the infinite and eternal Creator circumscribed himself within the finite and temporal creation, when the Word became flesh and dwelt among us, the pace at which Jesus lived scandalized crowds that wanted to rush to make him king by force. Jesus did not arrive in Bethany before Lazarus died, to the dismay of his sisters (Jn. 11:6, 32). Amidst a crowd of people, on his way to heal an official’s daughter, Jesus stopped to ask “who touched me?” (Mk. 5:31). Jesus stopped to take up children in his arms when others had no time for them (Mk. 10:13–16). He spent time in the house of Zaccheus (Lk. 19:1–10). Jesus reclined in the house of Pharisees, and there received the gift offered by a woman of disrepute (Lk 7:37). He spent time in the house of Simon who had serious skin ailments (Mk 14:3). Jesus hung on the cross, in gruesome physical agony and unbearable ignominy, for about six hours (Mk 15:35). What is Jesus doing in these scenes? What was Jesus doing in the prior thirty years of his life, physically laboring in the flyover country, middle-of-nowhere town of Nazareth? Doesn’t Jesus know how broken the world is, how urgent it is that it be fixed now? Beyond an example to imitate, Jesus was embodying the task humanity was created for, but failed to realize, to be God’s royal representatives, kings, priests, prophets, and gardeners on earth. As the first of the new humanity, now raised from the dead and glorified, Jesus even still had time for fellowship and attentiveness to a meal with friends (Jn 21:1–19). Our brothers and sisters with Christ who have Down Syndrome might prove icons of Christ and of the world-defying, humane pace at which God Incarnate walked and walks among us, if we have ears to hear and eyes to see.

Joshua Heavin

Joshua Heavin (PhD, Aberdeen) is a curate and deacon at an Anglican church in the Dallas area, and an adjunct professor in the School of Christian Thought at Houston Christian University, and at West Texas A&M University.