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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.”
Nobody knows how much Duane could understand. In one aptitude test, he showed no interest in differentiating a red square from a yellow triangle, and the neurologists told us that he had the cognition of a three-month-old. We were amused. How do you measure intelligence in someone so full of life, whose constant seizures played havoc with his memory and situational awareness? Snapshot neurological tests can’t capture the reality of his life.
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.
Wheelchairs and Fireworks
But I can’t leave these questions in the safe world of abstractions. I wish you could have known my brother.
To someone glancing toward him once, only to quickly look away, this was Duane: A lanky body in a high-support wheelchair, eyes often vacant, staring a hole in the ceiling. One of his wrists was noticeably contracted, and yes, he drooled.
But talk to anyone who spent time with him, and none of them will mention this. Because that wasn’t essential to who he was. And part of my bone-deep conviction that Singer’s arguments are wrong is my experience of Duane as a “who.” Whatever his level of intellectual development, he was someone. Someone who, even in Singer’s terms, had interests, someone who had a good purpose for which he was made.
Who was this someone? He had an impish grin, a mischievous sideways glance from coffee-brown eyes that you only saw if you were at eye level – and if he wasn’t in a post-seizure daze.
He derived enormous satisfaction from the little things that made up his day. You earned a huge smile just for shifting him to a more comfortable position. Kids fiddling with the knobs on his chair were enough to bring on the giggles. If he was watching fireworks, he would laugh till he choked. “Breathe, D, breathe!” we’d beg. Then, whoosh . . . BOOM! The next one lit the sky, and D was off again. And when he was mad the world knew that too. If he had tired of sitting around at church or at dinner, he’d let you know with a “get-me-out-of-here” roar.
The five of us siblings were born within the space of five years, with D right in the middle of the lineup. As kids we prayed confidently for miraculous healing, sure that the next morning he’d run out of his room to meet us. But sooner or later, the realization caught up with each of us: D is D, and he’s here, as he is, for a reason.
That discovery didn’t make life easier for our family. We can scan back over thirty-one years and celebrate the wondrous times. But slowing the frames, more lonely scenes come into view: the sleepless nights, the sprints to the hospital, the ache we sometimes felt of always being different.
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.
Our team of siblings had by now developed into a capable crew of nursing aides, cooks, and errand runners, all of us proud to “manage” looking after Duane. (My brother Evan was the first responder, with a knack for sleeping through Duane’s deafening happy noises, but waking the moment he heard the muffled grunts of a grand-mal seizure starting.) Nobody but us witnessed the crazy nights, and we didn’t talk about them. We hardly realized ourselves how worn down we were getting.
From the outside, it looked fine. Duane could go anywhere and be met with joyous greetings. People in the community cared about him. But not many truly knew him, or ever met him without a family member or aide at his side.
In retrospect, I see how much our family, all rather stubborn individualists, benefited from those often-strenuous years. Would we ever have become a team if we hadn’t been tested? We discovered that love is action – often the same action over and over. We learned that prayer had better come before any action.
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.
Becoming a Teacher
Then a new pastor arrived at the Bruderhof community where we lived in upstate New York. Richard Scott was funny, British, not too tall, and very perceptive. He looked Duane in the eye, and Duane looked back. Richard didn’t only see a boy in a wheelchair who needed complex care. He saw a teacher without any students, a missionary without a mission field.
And he noticed something else: that other young men in the community, despite hearing about dedication and service all their lives, can easily hit their twenties without any significant testing – and perhaps without much motivation beyond sports, music, or self-serving career ambitions.
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 happened next was nothing short of a revolution. The young men stepped up, and Duane’s life took an astounding new turn.
The School of Duane
Are you ready to be Duane’s student? Your crash course includes pushing his tricycle for hours, massaging his thin legs to relieve muscle cramps, and getting more oatmeal into his mouth than onto his shirt. It also includes finding that nothing you’ve excelled at till now counts for much here. Best tackle on the field? Meaningless. D needs help simply turning over in bed. Straight-A student? Who cares? D never even graduated from kindergarten. You’re sociable, clever? Useless. Conversations are basically a one-way street.
The real kicker is standing by him through a seizure. You can do nothing to stop or ease it. All you can do is keep him clear of hard surfaces and stroke his shaking shoulder. Then he will fall asleep for hours, leaving you with another assignment – the lesson of quiet. Life is not always a party with continuous background noise and witticisms flying. There must also be hours when you weep for lost chances and lost people and lost time. In turn, those hours can give way to a silence in which you begin to hear God’s hope for your life. Duane could take people there.
Duane shredded many of the rules we so often unwittingly live by: “Get ahead,” “Don’t commit yourself,” “Watch your back.” They all seem necessary – even as they drag us down under a burden of self-protection that leaves no room for costly obligations, or for love.
Dozens of young men now had the chance to change those rules.
So the household expanded, and two caregivers at a time came to live with us, rotating nights in D’s room. Gaining a crew of adopted sons, my parents also rediscovered the benefits of an eight-hour night. My mom, a legend among alumni of the School of Duane for her five-star bakery, was continually startled at the speed at which her cinnamon rolls disappeared.
My parents prayed for each of these young men, knowing that they often came to Duane’s door at a time when their own forward momentum had stalled. Some were not sure of their faith. Some were not sure of their future. Some were letting go of a love that wasn’t meant to be, and some didn’t yet know what love was.
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.
Duane’s care was physically and mentally demanding. You could never park him an inch too close to the table, or forget to set his brakes. Transfers from bed to chair required both gentleness and strength. Through it all, D was patient. Yes, he could holler when he had to, but he trusted you through everything that didn’t go right.
Caring for him was also fatherhood training. Graduates of Duane’s school could face whatever came along with humor, patience, and grace: basic nursing, daunting diapers, or a string of sleepless nights. They learned leadership, humility, and the necessity of prayer. Many future families were to benefit.
Gaining a Guardian
As my parents reached their sixties, my brother Brendan and his wife Miriam stepped up their support, becoming de facto house parents and Duane-team guides. Their kids sang Duane awake in the mornings and played catch with their teddy bears in his big, high-railed bed. My parents had always dreamed of visiting Europe, and now a small community in Germany invited them for an extended stay. They asked Brendan and Miriam to become Duane’s legal guardians – “but,” with a twinkle, “we are still his parents!”
Their travels were punctuated by phone calls, checking in with base camp. Brendan gave updates; Duane grinned at the familiar but insubstantial voices. Any changes in therapy or medication were discussed with the home team, the parents-on-tour, and the community’s medical staff. It proved to be a stable triangle.
Duane had always had the best possible medical care. His doctors, who were members of our community, had known him since babyhood. They had seen Duane through several intensive surgeries for seizure management (with varying positive results; none was a magical cure). Through good, bad, and downright wretched days, they had loved him like a son. If Dr. Jonathan Zimmerman looked over some heads at a church service and didn’t like Duane’s color, he’d appear with his stethoscope afterwards, and he wouldn't leave till he had things figured out.
Still, when Duane turned thirty, no one would have guessed he was heading into his final year. He had outlived plenty of specialists’ predictions. Meanwhile, though, his old friend Richard was dying of cancer. Perhaps his own impending mortality made Richard aware of something we couldn’t yet see. One evening, he spoke to Brendan and Miriam with the directness of one who does not have many words left: “When Duane’s time comes, let him go. You and I know that he’ll get the best medical care in the world. But don’t try to stop him from going home.”
Richard died on February 7, 2011. For Duane, there was one more summer full of his favorite things: chilling by the lake with burgers and a beer, quality time with old friends, fireworks. Alumni dropped in, now with families in tow, to introduce their kids to their teacher. But when his parents came home from their travels, they saw a change in his eyes.
By September, it was clear that Duane’s body was beginning to wear out. After years of tireless care, his medical team had to face the fact that nothing further could be accomplished except in the way of pain relief. As our family talked through hard decisions, we knew: after more years with him than we thought we’d ever get, his time was coming to an end.
Through a cold autumn, he was mostly in bed. His visitors ranged from medical staff to the community’s kindergarten class, always ready to break into raucous song. He had his enormous picture window and his favorite meals, when he wanted them. But he was partly elsewhere; when I spoke to him, he looked through me and then pulled back his gaze as if focusing on someone two feet away was difficult after peering into eternity.
He died so quietly that his brother Gareth, holding his hand, could hardly tell when he’d gone. But his eyes, which had been glazed and half-closed all day, were wide open and clear. He had not smiled in days; he was smiling. And it was a smile of surprised, joyous awe.
Just before his funeral, our family found ourselves standing shoulder to shoulder around him in the pattern we had adopted over the years: D as the hub, we as the spokes. We looked down at his still face in the pine casket, and marveled at his thirty-one intensely lived years.
Brendan read from Adam, God’s Beloved, an account of Henri J. M. Nouwen’s time caring for a young man with a condition similar to Duane’s:
While looking at Adam’s quiet face, we prayed in gratitude for the gift of his years of life, and for all that he had brought to us in his great physical weakness and incredible spiritual strength.… Here is my counselor, my teacher, and my guide, who could never say a word to me, but taught me more than any book, professor, or spiritual director. He is dead now. His life is over. His task is accomplished.… I felt an immense sadness, but also an immense gladness. I’d lost a companion and gained a guardian for the rest of my life.
There were a handful of guys from the National Guard at the funeral. Those men, young, strong, and healthy, shoveled the earth into Duane’s grave, saluting someone who could never stand on his own. I pictured Duane now, free from pain in his resurrected body, throwing his shoulders back, standing to his full six feet, and, free of the wheelchair, breaking into a joyous sprint.
The Upside-Down Truth
What was Jesus talking about when he said that the last will be first, and why does he accord such honor to “the least of these”? He calls them his brothers. He says that the door to his kingdom will open to the people who spend time with them, even if they are just offering a glass of water.
When he says “last” and “least,” Jesus is talking the language of our present world, not of his kingdom; he is pointing out the position to which we relegate people we see as unimportant. But he also says that his kingdom is not an otherworldly domain of future happiness for good people. It’s a real, boots-on-the-ground, right-now kingdom happening around us. What if “the least” are actually powerful commandos making inroads for their leader in enemy territory?
At Duane’s graveside, in the November sunlight, our family stood surrounded by more than three hundred of his friends. From out of the crowd, Alan, born with Noonan Syndrome, marched up and stood between my parents. I could almost hear D saying, as he passed the torch to his younger comrade, “Go get ’em, tiger. Crack some more hearts open.”
To crack a cold heart, to train it in love, is the most liberating service any person can do for another. These gifts do not show up on an ultrasound. They aren’t mentioned in the first diagnosis of disability. They aren’t measured by tests, and they aren’t included in studies on compassionate euthanasia.
And that’s why Duane’s story is more than a tale of a great kid growing up in a caring family, and more than a testament to the abstract idea that all people’s lives have value. There are people living bravely with disabilities everywhere. Many have strong networks of care, and many are devastatingly alone. Are the healthy individuals who pass them by, though, less alone? Perhaps it is isolation from humanity that breeds the sort of clinical coldness that suggests the removal of suffering by removing the one who suffers. Could the quest to eliminate others’ suffering be a disguised attempt to distance ourselves from pain, because we fear there is no way through it?
My father heard a quote during a church service, and in that moment all the hurt stored up over the years erupted for everyone to see. Yet his love and care continued quietly through all the years to come, steadied by faith and humor. My mother wept at the graduations of Duane’s classmates, and at their weddings. Yet while grieving deeply for what could never be, she completely embraced what was. Is it possible to protect ourselves from grief? What if we end up protecting ourselves from love?
To reach through this pain to the love beneath, we need resources beyond the imagination of utilitarians like Peter Singer. Yes, Duane “provided value” to many. Yes, our lives are richer because he was in them. But my parents, and the other members of the Bruderhof, were not waiting to see if this would be the case before they decided whether Duane was worthy of regard. He did not need to prove to anyone that he was an asset. It was the reverse: he was able to contribute because his community knew that he was valuable anyway, as a brother. His presence with us brought the image of God to light – within him and within those who cared for him.
Duane’s claim to be “someone who counts” didn’t depend on his being (to use Singer’s language) biographically aware of himself as having interests. His life, like all our lives, is sacred because he, like the rest of us, was drafted into this existence, into this peace-bringing army of the sons of Adam. Our duties are assigned, and we may not go absent without leave.
This wisdom is not in any ethics textbook. Those attempting to determine what is right or wrong for people like Duane ought to come live alongside – but only if they are ready to have some ethics applied in the reverse direction. That’s how dozens of young men came to experience this truth, which the utilitarian project rejects as an outmoded relic. These students thank Duane – my brother and theirs – for an education that completely overturned their judgments of value and success. At the end of the line, they encountered the last; then the whole line turned, and the last was in the lead.