Share this

How my brother who could never walk or talk coached dozens of his peers into manhood.

Maureen Swinger

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 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 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, 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 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 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, 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 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 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 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 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 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 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 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.

culled from plough.com

Leave a Reply

Your email address will not be published.