Seeing the divine in children born disabled ignores their very real humanity

http://www.theguardian.com/society/2015/apr/24/babies-abnormalities-downs-syndrome-god-chemicals

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When my brother was born, I was told he was a sign from God. Church ladies hovered around him, cooing over his bright, blue almond-shaped eyes and declaring him to be an angel, sent from heaven. Or even a little bit of God here on Earth.

My brother was born with Down’s syndrome and for most of his life, people have been making it a point to talk about how he is a divine gift – as if his extra chromosome somehow gives him a direct line to heaven.

He’s not the only one. Recently, a baby was born in India with a birth defect that makes her look like the Hindu god Ganesh. As word of the birth spread, visitors have come to pay their respects and offer gifts to the child and honor her as an incarnation of the divine.

The awe and wonder surrounding her birth and the birth of my brother is not without precedent. People have interpreted anomalies in babies as messages from God for centuries. Sixteenth-century surgeon Ambroise Paré told of a woman who birthed a child with wings, a horn and a single foot as a sign of the misfortunes that were to come when Pope Julius II waged war against King Louis XII. The ancient Egyptians revered dwarfs as earthly representations of the gods Bes and Ptah.

Of course, not all divine connections are light and glory. Early Scottish folklore believed that elves or fairies would take away desirable children and in their place leave a changeling – an elfin child, who would grow up peevish and malcontent. The reality behind those myths, which are pervasive in many western European nations, is that changelings were often children born with Down’s syndrome or other disabilities like Prader-Willi syndrome, cerebral palsy and spina bifida.

Even those who eschew talk of gods and the divine still see messages in our difference.

Recently, geneticist and pediatrician Judith Hall noted in an interview: “In the same way that ancient societies viewed [people] with differences as a pathway to the divine, I see them as a pathway to access the knowledge of nature.” Hall further explains that by tracing genetic anomalies, worlds of scientific knowledge have been expanded.

Hall is not alone in this belief. In his book Freaks of Nature, Mark Blumberg explores genetic anomalies and what they tell us about nature and evolution. Blumberg posits that when genetic variance occurs in nature it is called evolution; when it’s in humans we regulate our differences to a sideshow.

In reality, these differences are a natural part of evolution and can reveal key pieces of information about our biology. In his book, Blumberg tells the story of Johnny Eck, a boy born without legs who learned to walk just as easily and gracefully on his hands. Blumberg writes that our body’s solutions to the often freakish variations in nature “emerge dynamically through an unscripted process that reflects the inherent flexibility of complex systems. This is a developmental process, of responses nested within responses, of give and take. And when, as so often happens, we are surprised by what unfolds, we begin to appreciate the fact that there is always more developmental potential than we know.”

For Blumberg, genetic difference doesn’t just act as a conduit to past nature, but to its future as well. We may lament and gawk at a child born with two heads, or try ferociously to find cures for achondroplasia, but should evolution ever render these differences necessary, what we now see as weakness will be a strength. So even for the atheist, those born different are still divine messengers of a murky biological past and a harbinger of a future yet unseen and unknown.

This fact has been exemplified over and over in the animal kingdom, most famously with the peppered moth. During the American Industrial Revolution, there was an increase in the number of dark-colored peppered moths. Being dark meant the moths could more easily blend in with their soot-covered surroundings and hide from predators. But as the pervasive pollution abated, so did the number of dark-colored moths. This decline corresponded with an increase in white-colored moths, who could now more easily blend in with cleaner surroundings.

Genetic difference, for modern medicine, is also a herald of this present age. The child in India is believed to be malformed because of the impact of pollution and malnutrition, and often scientists act like harried detectives, attempting to pin genetic differences on our modern chemical-laced lifestyle.

Yet, ultimately, these interpretations miss the very child before them.

People rarely refer to my brother as a divine gift any more. Perhaps this is just because I am not around to hear it. I moved away many years ago, and he lives on the other side of the country. But he is also 18, and his life and his actions are that of a complicated teenager. He is a person, not a divine messenger. He has all the messy issues that normal teens have, plus the added layer of Down’s syndrome. And this means it’s difficult to relegate him to the role of an angel.

Similarly, I imagine that as the baby in India grows up, she will become less divine in the eyes of those around her as her burgeoning personality resists the labels so willingly bestowed like offerings.

I understand the impulse to make meaning of our anomalies, either through divine reverence or scientific analysis. Twisting the narrative of genetic difference helps lessen the complicated emotions that surround the birth of a child born with an elephant trunk. Finding truth, beauty, God or scientific knowledge in these complicated faces helps build inroads from the margins – where children with disabilities are often left – to the mainstream. Giving them the role of divine messenger gives them a seat at society’s table, rather than hiding them or relegating them to a freak show.

And yet, each attempt to seek meaning in the face of a child obscures that fact that what is before us is, first and foremost, a human.