Down Syndrome and the Image of God
A biology teacher sees things with a new perspective when his own child is born with trisomy 21, and reflects on her life and what it has meant to him.
“How many chromosomes do humans have?” That was one of the questions I would ask my students while teaching high school biology in the city of Boston. The answer I graded as “correct” was: “humans have 46 chromosomes.” End of story. Little did I know that the arrival of my firstborn child would force me to expand my understanding of human genetics, and what means to be created in the image of God.
In 2008, my daughter Natalia was born with 47 chromosomes, a condition is usually known as trisomy 21 or Down syndrome. Before her birth, all I knew about Down syndrome came from my high school and college courses. Sad to say, most of the scientific literature I had consulted throughout my academic training treated “trisomy 21” as a “chromosomal aberration” that can be detected and even prevented through medical advances in prenatal screening. Other than the extensive list of medical complications, I never read anything positive or encouraging about individuals affected by such conditions.
Her contagious belly laugh and her dancing abilities are a reflection of her purpose rather than a justification of her worth.
Naturally, finding out that my child had the same “genetic defect” that I had read about in my textbooks was an intimidating experience. Fortunately, the experiences lived alongside Natalia have helped realize the lopsided nature of the information published in science textbooks.
Although trisomy 21 causes intellectual and physical challenges, it is also true that with appropriate support and treatment, many people with Down syndrome lead happy and productive lives. My wife and I often joke that the hardest part of raising a child with Down syndrome is having to deal with people that do not have Down syndrome.
Raising Natalia has helped me understand the danger of reducing a person’s potential to her genetic profile. Although it has been unquestionably a lonely road for our family, Natalia’s humor and perseverance through adversity have brought us joy and a sense of purpose.
This is not to say that my faith in Christ was automatically strengthened by my daughter’s arrival. On the contrary, a serious theological crisis ensued the moment that beautiful, but not “typical,” girl came to this world. Ironically, my faith crisis was accentuated by my “faithful adherence” to a particular biblical understanding of what constitutes the image of God in humans.
Growing up as a pastor’s kid in an evangelical household, I can not count the number of times Psalms 139 was read during baby dedication ceremonies:
“For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful,… Your eyes saw my unformed body;…” (Psalm 139:13-16)
Up until my daughter’s birth, I thought that being “fearfully and wonderfully made” meant being born with certain physical and intellectual qualities, such as having 46 chromosomes. Based on my rationale, I believed that any aspect that did not meet my normative preconceptions of humanity could not be part of God’s purpose and thus, it had to be blamed on the Fall.
Nevertheless, in the course of loving and caring for my daughter, I have come to realize that the image of God does not need to be thought of as an “inventory” or a “checklist” of desirable human traits. Despite her evident challenges, God’s image is displayed all over Natalia’s life, not by means of her specific skills or talents, but by virtue of the one who endowed her with such capabilities. Her contagious belly laugh and her dancing abilities are a reflection of her purpose rather than a justification of her worth. I have come to understand God’s image upon individuals with and without congenital impairments as a “divine seal” that denotes our intrinsic worth despite the presence or absence of any given feature.
The change in my understanding of the Imago Dei (the image of God) still does not account for the presence of genetic impairments in the human population. Some theologians have resorted to indict the Fall as the reason for the occurrence of trisomy 21 in humans. While the accuracy of such theological assumption needs to be examined in more detail, allow me to share several reasons why I worry about such theological assumptions.
From a social standpoint, framing Down syndrome as an incidental aspect of the Fall places a disproportionate burden on individuals that already hold a questionable human status in our society. Establishing a link between the universality of our sinful nature and the particularity of Down syndrome can lead some to make similar theological assumptions as of the ones made by Jesus’ disciples in John 9:
“Rabbi, who sinned, this man or his parents, that he was born blind?” (John 9:2)
Here, the disciples could not conceive any reason for congenital blindness other than sin. Jesus decouples the theological link proposed by his disciples by clarifying that sin was not to blame for the man’s blindness:
“Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him. (John 9:3)
Unfortunately, theological conjectures such as the one presented on this ancient account are still present in our faith communities today. As a minister that supports families affected by disabilities, I am horrified by the stories of many individuals who have been hurt by clergy or congregations that have resorted to blaming congenital impairments on sinful acts.
On the other hand, the fact that all of us have sinned against God, but not all of us are affected by trisomy 21 should make us wonder whether genetic variations―including those that may result in human impairments―are an intrinsic aspect of all living creatures from the very beginning of creation, not only after the Fall. Can we reconcile this alternative with the biblical account of creation?
Many of us are willing to concede that Adam and Eve had to be morally vulnerable before the Fall. Otherwise, they would not have been tempted to disobey God’s instructions. If we were to expand the inherent susceptibility displayed by Adam and Eve in the moral sphere to their biological nature, then we can begin to explore what it means to be a finite creature from a genetic standpoint.
Ultimately, reclaiming God’s image upon those who are often dehumanized by our society will require us to envision people with Down syndrome not as living reminders of our fallenness, but rather as living testimonies of what means to be a “fearfully and wonderfully made” and yet vulnerable human.
I still ask my biology students, “How many chromosomes do humans have?” Unlike before, now I take advantage of such opportunities to let them know that most of us have 46 chromosomes. However, I also let them know that the person that has taught me the most about what it means to be a human happens to have 47 chromosomes.
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About the author
Samuel L. Caraballo
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