November 22, 2021
WN: So beautiful. So very humbling. So complicatedly hopeful.
The summer my brother Duane turned twenty, a formidable young man stayed with us on a break from the Ivy League. He had never, to anyone’s knowledge, lost an argument. Several weeks into his visit, my mother walked into the dining room where my brother and his friend were, in theory, eating lunch. In reality, both men were sitting at the table with locked jaws. One didn’t have to say, “I need you to eat.” The other didn’t need to say, “Hell, no.” They both knew exactly what was going on: the Ivy Leaguer was losing an argument to my brother, who had never learned to speak.
Duane was born healthy, as far as anyone could tell, but when he was three months old he was attacked by his first grand-mal seizure, with countless more to follow. He was diagnosed with Lennox-Gastaut syndrome, a rare form of epilepsy, and his seizures were so brutal that the doctors didn’t think he’d live out the year. That one year turned into thirty-one and a half.
Often when I tell people about my brother, I see questions in their faces: “Why was he ever born? Why put him through needless suffering? Why dedicate your family’s time and energy to a hopeless case? Why spend all that money?” These questions reflect a worldview so widely accepted today that most people don’t even realize they hold it: that of utilitarianism. Yet its principles are constantly invoked in debates over right or wrong, for instance in regard to abortion or physician-assisted suicide.
Most famously advanced by John Stuart Mill, utilitarianism argues that an action is good only because it maximizes a given benefit. This school of thought’s most prominent champion today is the Australian philosopher Peter Singer, a professor of bioethics at Princeton University. In Singer’s version of utilitarianism – which is in many ways just an especially forthright articulation of our culture’s worldview – to act ethically means to seek to maximize the satisfaction of people’s desires. This, in Singer’s view, also means that we must seek to minimize the suffering of people unable to have or express preferences – if necessary, through terminating their lives before or after birth. People such as Duane.
In 1980, the “save the children from existing” philosophy hadn’t reached southwest Pennsylvania, where my parents lived. And before Duane’s birth, they had no idea there was anything different about him. But if they had known, I know what my parents would have said: “He’s our son.”
Can Singer or other utilitarians do any better than the neurologists? For many in this camp, not all members of the human species are considered persons. Personhood, they argue, requires self-awareness and the ability to conceive of future goals and plans: to experience oneself as having interests. Duane would not have qualified. In his case, utilitarianism would say that another good – reducing suffering – should have kicked in. No doubt Singer would allow that my parents’ preference to keep Duane alive should have weight (after all, they are “persons,” even if he supposedly wasn’t). But still, by Singer’s account, there was nothing in Duane himself that could have made it wrong to kill him.
Christians do not think like this. In Christian terms, an action is good not only because it has beneficial consequences, but because it is good in itself. What’s more, good actions have the power to change for the better those who do them. We seek to love like God – to be merciful, honorable, and just – because we want to reflect his character: to “become like Christ,” to grow into “the knowledge of the Son of God, to mature manhood, to the measure of the stature of the fullness of Christ,” as Paul writes in his letter to the Ephesians. It is this becoming that guides our decisions, because all choices change us – in one direction or another.
To be sure, we were among the most supported of families caring for a child with special needs. As young people, my parents had joined the Bruderhof, a movement founded on Jesus’ call to love one another. We lived in an intentional community of three hundred people committed to serving each other throughout life. Duane, in short, could not have landed anywhere better. And yet, even this did not supply his story with a tidy happily-ever-after.
While Duane was a young child, our family managed all of his home care. During the day the teachers at the Bruderhof’s children’s center included him in his peer group’s activities. That worked, mostly, until he reached his teens. By then, he was taller than my dad, and if a seizure started during a transfer to or from his wheelchair, he could hurl himself and his caregiver to the ground. Starting in ninth grade, he spent his days off the community premises, at a school for children with special needs.
We also learned that encouraging words from others had their place, but that some expressions backfired. Take the word gift. People often told us what a gift Duane was. And yes, he was a gift, wrapped in incredibly complex packaging, a present that could tear your heart in two. But hearing the word, I was sometimes only just able to bite back a snarky “Would you like to do the night shift with our gift?”
In the end, this was the form of love that we learned to value: someone showing up to take Duane on a walk. Someone hosting a fireworks show for his birthday. Someone looking him in the eye and saying, “How’s it going?” without worrying about getting an answer.
Richard wasn’t only worried about these young men’s futures but also about the community’s present. If we weren’t finding a place for Duane to help work for the kingdom among us, didn’t that indicate a kind of blindness – an inability to see as Christ sees? These concerns came to an unexpected head at one community meeting in which we were reading together from an essay by Bruderhof founder Eberhard Arnold:
Again and again, what it amounts to is a clash between two opposing goals: One goal is to seek the person of high position, the great person, the spiritual person, the clever person … the person who because of his natural talents represents a high peak, as it were, in the mountain range of humanity. The other goal is to seek the lowly people, the minorities, the disabled, the prisoners: the valleys of the lowly between the heights of the great.… The first goal aims to exalt the individual, by virtue of his natural gifts, to a state approaching the divine. In the end he is made a god. The other goal seeks the wonder and mystery of God becoming man, God seeking the lowest place among us.
At these words, my father cried out, leaped from his chair, and ran out of the room weeping. The rest of my family was frozen in place. After all, Arnold’s words, though vivid, expressed a familiar idea, one we’d heard in church before. Perhaps we were a little too used to hearing it.
It is not that Christianity glorifies suffering for its own sake. Even Jesus suffered on the cross “for the sake of the joy that was set before him.” It is not that Christian teaching denies that sickness should, and will, be healed. Rather, we are convinced that God is in the business of exalting the lowly, that he takes his place in the frailest of bodies, that his “power is made perfect in weakness.”
My father heard that truth in Arnold’s words that day. So did Richard. And in a community meeting not long afterward, he offered a startling proposal: what if Duane came home from his school for special needs – to teach? What if a new generation of young men became his students?
What Duane taught varied from person to person. But nobody graduated from his school unchanged. After he died, my parents were inundated with letters. One man wrote,
During my early twenties my life was fraught with struggle and confusion, till I got the chance to care for Duane.… He taught me that I really didn’t know it all, that I had to start caring for others first … that perfection and strength as God sees them were utterly different from my previous strivings for those qualities. I don’t know where I’d be without having known him.
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