11. Life, Death, and Disability
11
Life, Death, and Disability
Good faith Christians believe every human life—in every form, at every stage—matters.
Soaked in sweat, flying alone on a plane chartered by the Centers for Disease Control, Dr. Kent Brantly didn’t know if he would live or die. Less than a year before, motivated by faith, the Brantlys had moved to Monrovia, Liberia, so Kent could serve a medical mission. Little did he or anyone else know that, just five months later, the most deadly and contagious virus to erupt in decades would walk into his clinic.
Now Kent himself had been struck down by the deadly virus he’d been fighting for months in Monrovia: Ebola.
Only weeks before, word of the first case had arrived. Because it was two hundred miles away, Kent and his team weren’t too worried—after all, there were many other deadly diseases to be concerned about in West Africa. What were the chances this would become an epidemic? But the warning was enough for the team to prepare. They knew that, if Ebola reached their town, death would come to most who contracted it. The medical team created special facilities, trained on protocols, and stocked up on all the personal protective equipment they could find that might help them fight off the virus.
It didn’t take long for their premonitions to come true. As Ebola spread throughout West Africa, Monrovia became ground zero for the epidemic. Kent, knowing the risks, committed to stay and help.
Then his worst nightmare came true. One morning he woke with symptoms and understood that he now faced the same dark path so many other patients before him had walked. At the urging of Samaritan’s Purse, the relief organization that had sent Kent to Liberia, the American government intervened and decided to bring him home. He laments to this day that others didn’t have the same opportunity and lives with some survivor’s guilt after recovering from Ebola in the following months.
Many people have asked Kent if his faith is what healed him from the deadly virus. After sharing how grateful he is to be Ebola-free, his response is always the same: “Actually, it is my faith that’s responsible for me getting Ebola in the first place, because it led me to serve the people of Monrovia, Liberia.”
This is the way a good faith Christian thinks.
People of good faith risk their comfort, reputation, and even their lives for the lives of others. They not only fight deadly diseases but also defend the value of life along its entire continuum. They give voice to those yet to be born, respect and affirm the dignity of people who are disabled, and ensure life extends until its natural end.
Christians believe that every human life—in all its forms, at every stage—matters.
We are called to protect life as God’s good gift to us. Each life is a miracle, bearing witness to God’s infinite creativity and faithful intention to bless our world through people created in his image. Jesus had a pretty extreme view of how much we should value life. He taught that we are to love our neighbors, even when doing so could endanger our lives. “There is no greater love than to lay down one’s life for one’s friends” (John 15:13).
A deep commitment to valuing life is well documented from the second century, when Christians were known to go outside the city gates to rescue unwanted babies and abandoned children.1 During the deadly plagues in Rome, when doctors and leaders fled to save their own lives, Christians stayed to provide bread and water to the sick.2
As a good faith Christian, Dr. Kent Brantly comes from a long tradition of selfless, reckless compassion.
Valuing All of Life
Over the last five decades, the majority of Christian engagement around “life” issues has focused on tightening abortion laws and working to shut down clinics. It’s hard to argue with the motivation: more than fifty-four million abortions have been performed in America since the 1973 Roe v. Wade Supreme Court decision.3 Some Christians don’t appreciate pro-lifers’ noise. They wish antiabortion activists would pipe down and move on to more culturally palatable social issues. Thank God they have not.
David and Jason Benham have faithfully worked on this issue all their lives. Their father, Flip Benham, led Norma McCorvey (better known by the legal pseudonym “Jane Roe,” plaintiff in Roe v. Wade) to Jesus during their childhood. David and Jason pray on sidewalks outside abortion clinics and, every chance they get, speak up for the unborn in public forums.
The latest innovations in medical technology provide proof of life from the earliest moments in the womb. Groups like Save the Storks offer free ultrasounds in their mobile units, allowing a mom-to-be to see with her own eyes her child’s beating heart. Alternative pregnancy support centers, like Avail in Manhattan and Caris Pregnancy Counseling and Resources in Chicago, offer women a real choice. In contrast to the options available from groups such as Planned Parenthood (whose own statistics reveal that “choices” are not presented in equal measure4), a woman is offered care, counseling, and support throughout her pregnancy and beyond so that, in her early years of motherhood, she is not alone.
In addition, more postabortive women are sharing their stories publicly. The promise of a carefree life rarely pans out. From depression and mental health issues to lasting shame and guilt, women often suffer when they end a life.
Good faith Christians must push back against a culture that views life as disposable. And our value of life must be holistic. We must focus not only on protecting life prior to birth but also on nurturing children after they are born. This means supporting mothers-to-be who are scared, ashamed, and uncertain; churches must come alongside women to help them forge a viable future for their child.
Nurturing children after they are born also means adding to the increasing number of adoptive and foster families in our churches. The growing emphasis on adoption and foster care—and more recently, the concern Christians have expressed about care for refugees—is a bright spot among followers of Jesus in the last decade. We see evidence of this positive trend in our research. Five percent of practicing Christians, compared with 2 percent of all US adults, have adopted children. Three percent of practicing Christians are foster parents, and 31 percent have seriously considered fostering a child. By comparison, 2 percent of all adults are foster parents, and 11 percent have seriously considered fostering a child.5 We pray these numbers continue to rise in the coming years.
This is the kind of good faith that disarms the culture of death.
Natural Death
David Kuo was a dear friend. It is still hard for me to speak of him in the past tense. His brotherly affection, encouragement, and singular voice still influence me. “Be faithful, you moron. Don’t screw this up. God’s gifted you, Gabe, and you better keep pressing in,” he said in one of our final conversations before his death in 2014. I don’t know that I’ve met a more sincere, bold, and committed follower of Jesus than David. Like all of us, he had his rough spots, but God fashioned a beautiful soul in this multitalented man.
David lived a lot of life after he was given six months to live. He served as a special assistant to President George W. Bush, wrote a New York Times bestselling political memoir, and founded a media start-up. His brain cancer, diagnosed in 2003, was declared incurable, but that didn’t stop him. He pursued an aggressive treatment plan, including risky brain surgery, because he was determined to stay in the game. And when the cancer returned, he fought on, undergoing two more brain surgeries over the next ten years.
David’s dear wife, Kim, and so many of his friends were thrilled to watch him live long past that first diagnosis. Instead of six months, we enjoyed another decade with him.
David’s unexpectedly extended life span not only benefited him but also dramatically enriched the lives of others. First, David and Kim brought new life into the world, giving birth to two beautiful children. Second, as his rhythm of life changed, David found more margin and energy to spend time with a community of Christian leaders who benefited from his wisdom and sober-mindedness. His brushes with death made him fearless, no longer concerned about his reputation. He pressed into our lives and called us out, pushing us to live into all God called us to.
The decade after David was given six months to live was, arguably, his most fruitful.
In society today, the trends point in a troubling direction. According to one recent poll, 69 percent of Americans believe it should be legal for doctors to end a patient’s life if the person is terminally ill and requests assistance to die painlessly.6
After being diagnosed with brain cancer at the age of twenty-nine and given six months to live, Brittany Maynard launched a campaign called “My Right to Die with Dignity at 29.”7 After selecting a date to end her life, she posted videos to count down the days, advocating for the right to die, not just for herself but for anyone who wants to control the timing of their death.
Millions of people followed Brittany’s personal, now public, story.8 Many Americans were caught off guard. Why would this beautiful young woman forego treatment and prematurely end her life?
As Brittany approached her final three days, she let the world in on her internal struggle. “I still feel good enough and I still have enough joy and I still laugh and smile with my family and friends enough that it doesn’t seem like the right time right now.”9 But then she reassured herself, “But it will come, because I feel myself getting sicker. It’s happening each week.” Can you feel her tension and doubt? In a moment of vulnerability, she seemed to be fighting second thoughts, uncertain if this was the right time to die.
Brittany ended her life on November 1, 2014, with drugs prescribed by her doctor. She became her own arbiter of life and death, believing she knew best when to die.
David Kuo left it up to God. Kim Kuo, his widow, wrote later:
As Pope Francis observes, assisted suicide gives us a “false sense of compassion.” Choosing suicide at any point is the same sin Adam and Eve committed in the garden: the pride of wanting to be God, not simply to serve him. True compassion is surrounding a terminal patient with love, support, and palliative care. . . . Are we willing to surrender to our Creator the specifics of how and when we die? How much do we actually trust him with our final days?10
When we take death into our own hands, we reveal our lack of trust in God. And we reenact the original sin: wanting to be God, in control of our own lives.
It’s understandable. Few people want to stare pain in the face and walk forward. We’ve been culturally conditioned to avoid suffering at all costs. But according to the apostle Paul, suffering is not necessarily something to be avoided (see Rom. 8:16–18). In fact, in suffering we may experience grace that can be found nowhere else.
Good faith Christians like David Kuo trust that death will ultimately be defeated. “For Christ must reign until he humbles all his enemies beneath his feet. And the last enemy to be destroyed is death” (1 Cor. 15:25–26). God promises resurrection in Christ because he is a God of life.
And good faith Christians must be people of life.
The Grace of Disability
I like to tease my wife, Rebekah, about one of her high school accomplishments that few people know about. Not only was she first chair trumpet (the only girl alongside thirteen boys), but she was also the drum major for her high school marching band. You can imagine my thrill when we visited her childhood home early in our marriage and I discovered the National Drum Major Champion trophy. From an early age, Rebekah found significance in achieving.
Both Rebekah and I thrived in performance-based environments. When achievement and recognition were motivators, we responded like Pavlov’s dogs. We were good at hitting our goals, making the teams, and winning the championships.
It wasn’t long into our marriage that our flawed ways of measuring significance were shattered. We learned that God couldn’t care less about performance-based self-worth—and we learned that lesson through our firstborn son, Cade.
I was twenty-six years old when Cade was born with Down syndrome. Children with Down syndrome have one extra chromosome and are often characterized by delayed mental and physical development and a joyful disposition. They have significant potential, but it can take a little longer to develop.
If Rebekah and I were counting on our son’s performance to validate our parenting, we were in for a rude awakening.
During the toddler years, we inundated him with eight weekly therapies and wooden contraptions to keep his hips aligned and aid his potential to stand up. We were so determined to help him achieve. But even on the special-needs charts, Cade missed the mark. On basic milestones—crawling, saying his first words, interacting with other children—he fell further and further behind.
It was a shock to discover that, for some things, more practice and mental toughness aren’t the answer. When life has always been up and to the right, like a business growth chart, that lesson is almost impossible to learn.
But Rebekah and I often wondered, What is God trying to teach us?
Cade would be our teacher. He would help us throw the performance-based measuring stick in the fire.
Children like Cade are a threat to modern societies. Not because his disability physically threatens anyone. Rather, because typical people can hide their imperfections but the disabled always have theirs on display, Cade is an in-your-face reminder that aspirations for perfection are flawed and hopeless. People like Cade disrupt and redefine society’s definition of human value.
While he does, technically speaking, have a “disability,” our family, friends, and community recognize his gifts and unique abilities. On the streets of Manhattan, Cade never met a stranger. Always quick to interrupt a self-consumed soul, he would insist that passersby remove their headphones and speak a hello to his waving hand. In subways, he would crowd onto any inch of plastic seat he could spot, often to the initial dismay of a distracted and defensive passenger. But Cade could sense their temperament and would make every effort to connect. More often than not, they would reciprocate the attention and a beautiful moment would happen.
This is the upside-down way of Jesus that makes a world in which disability is a grace.
The gift of Cade saved my life. My wise therapist told me one day, “Your unconditional acceptance, joy, and love for your son is exactly how your heavenly Father feels about you.” His words hit me like a ton of bricks.
There is nothing I can do to earn higher approval. My performances don’t impress. My achievements have been for my glory, not yours.
I was embarrassed, ashamed even. And then so relieved. All this wisdom from a teacher whose words you might hardly understand. This is the grace of the disabled among us. They not only enrich our lives but also teach us some of life’s most important lessons.
They show us our own insufficiencies.
They teach us how to have joy in any circumstance.
They reshape our definition of perfect.
They alter career paths and require families to work together.
They invite us to engage instead of simply walking by.
They love unconditionally, asking little in return.
In a 2015 episode of The Liturgists podcast on the topic of abortion, musician Michael Gungor, who also has a child with Down syndrome, told a story about his wife, Lisa, who was at a support meeting for moms with Down kids. The group was meeting in a coffee shop, and a woman who was walking by asked what they were meeting about. When the group leader explained what had brought the moms together, the woman said, “Oh. I thought they just took care of that nowadays.”11
At its worst, our culture diminishes the value of those who don’t immediately appear to “benefit” anyone. Good faith Christians, on the other hand, believe that every human life matters—that every human being, no matter his or her number of chromosomes, is indelibly imprinted with God’s image and is therefore of infinite worth.
For the first eight years of her life, our daughter, Kennedy, never heard the words “Down syndrome.” We didn’t try to hide Cade’s diagnosis from her, but we wanted her to know and love Cade as a person—not as a “special need” or a “kid with Down’s.”
The relationship between those two is unbelievably sweet. From her playing teacher for our version of summer school to instructing him in the fine art of ballroom dance, Kennedy brings confidence and joy out of Cade.
We could never have anticipated what a gift Cade would be to us. But I can tell you that not a day goes by that we don’t consciously thank God for sending this beautiful boy into our family.