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years ago, a woman posed a hypothetical scenario to Richard Dawkins, the evolutionary biologist and well-known atheist, tweeting: “I honestly don’t know what I would do if I were pregnant with a kid with Down syndrome. Real ethical dilemma.”
Dawkins tweeted back seconds later: “Abort it and try again. It would be immoral to bring it into the world if you have the choice.”
In the firestorm of outrage that followed, even many of Dawkins’s fellow utilitarians disavowed his hundred-character pronouncement. The next day, Dawkins half-apologized in a statement on his website, but still did not back down: “Parents who care for their children with Down syndrome usually form strong bonds of affection with them, as they would with any child. ... I have sympathy for this emotional point, but it is an emotional one, not a logical one. ...
“If your morality is based, as mine is, on a desire to increase the sum of happiness and reduce suffering, the decision to deliberately give birth to a Down baby, when you have the choice to abort it early in the pregnancy, might actually be immoral from the point of view of the child’s own welfare.”footnote
As advocates for people with disabilities were quick to point out, Dawkins’s assumptions about Down syndrome are not borne out by research. A 2011 study, for instance, found that 99 percent of individuals with Down syndrome were happy with their lives, and that 97 percent of their parents and 94 percent of their siblings reported feelings of pride.footnote Only 5 percent of siblings were willing to trade their brother or sister with Down syndrome for a sibling without it.
Yet citing quality-of-life studies does not get to the root of Dawkins’s argument for aborting babies with disabilities: the fear of suffering. I understand and share this fear. If Richard Dawkins were to read these words, I’d want him to know that I appreciate his basic motive: “a desire to increase the sum of happiness and reduce suffering.” At a time marked by the endless march of grim headlines, don’t we need more people passionately working toward this goal?
The difficulty, of course, is that neither suffering nor happiness is objectively measureable; both are, to use Dawkins’s own words, a matter of emotion, not of logic. How are we to determine who suffers more: a child with disabilities who possesses an uncomplicated joy in life, or an intellectually gifted child who has difficulty forging relationships? Aleksandr Solzhenitsyn famously wrote that “the line dividing good and evil cuts through the heart of every human being.” Similarly, the line dividing happiness and suffering runs through each human heart. That includes the hearts not only of people like Richard Dawkins but also of people like my sister Iris.
Iris entered the world in 1982, when I was three and a half. The obstetrician diagnosed her with Down syndrome and predicted that she would never walk, talk, or make any meaningful contribution to our family or society. Too tactful to state his opinion outright, he nonetheless made it clear: my parents should not delay in committing Iris to an institution where she could receive lifetime care, and we could avoid a pointless disruption of our family life.
My parents refused, and Iris came home to live with us. Despite the extra challenges she brought, our family soon formed (to use Dawkins’s words) “strong bonds of mutual affection” with her. Born with two serious heart conditions, Iris underwent two open-heart surgeries before her second birthday. Before and between operations, she suffered from chronic pneumonia and spent most of her days in an oxygen tent. Endless processions of therapists helped her learn to swallow, cough, move, sit, and speak.
Free from intellectual hubris, Iris seems able to perceive spiritual realities the rest of us cannot.
Later, although she was healthier, Iris’s routines remained demanding. Helping her to dress, cut her food, brush her teeth, prepare for the day, do her therapies and her homework, keep track of her belongings, end the day happily, and stay peacefully in bed at night were (and are) tasks that require time and patience. Psychologists who have tested her say she has an extremely low IQ. Since it often isn’t possible to reason with her – and she can be quite stubborn – creativity and humor are often our only way out.
Our family life changed in other, less visible ways too. We’ve never been able to undertake the adventures that “typical” families can, let alone spontaneous outings. Daily problem-solving with Iris’s teachers and caregivers took time and research, often squeezing out a broader social life. For my father and mother, who were already in their fifties when Iris was in kindergarten, the challenges of midlife compounded the fatigue of caring for a child with special needs. It wasn’t always pretty.
As children, we were unaware of these extra burdens, which weighed on our parents. And like most parents of a child with disabilities, their worries about the future were complicated by the question of who would care for Iris when they grew old and died. Although life expectancy for people with Down syndrome used to be in the late twenties to early thirties, today, thanks to medical innovation, it has risen to fifty or sixty years – an advance that presents its own challenges. In the United States, individuals with disabilities receive few federal and state services after age twenty-one, even though this is often the time when their needs become more complex. We were extremely lucky not to have financial worries – more about that later – but families we knew struggled to cover the costs of medicine, therapies, adaptive equipment, and sometimes live-in caregivers.
I can’t sugarcoat it: disability is tough. But does this mean that Iris’s life is primarily one of suffering? Would the rest of us have been happier without her?
Decide for yourself. Iris has a spunky, bubbly personality. She is drawn to others like a bee to nectar, effortlessly overcoming interpersonal barriers. We call her our “family ambassador” because she is always the first to go out of her way to connect with new people. Once she has established a relationship, we need only to say “We are Iris’s family” to become fast friends. She sympathizes deeply with anyone in need: when she hears a news story about a violent incident halfway around the world, it hits her as though the victims were family.
Iris’s contagious guffaw can enliven an entire concert hall. (We’ve joked that she could earn a handsome income as a laugh starter.) Whether or not she understands an attempted joke, she’ll let loose without a moment’s hesitation. She remembers the characters played by childhood friends in grade-school theater productions, and continues to address them decades later by their stage names. Including in church. After celebrating the Lord’s Supper, church members customarily greet one another with the words “peace and unity.” At one such occasion, Iris spotted a beloved classmate and her gravelly voice rang out, “Princess Gloriana! Peace and unity!”
In her freedom from intellectual hubris, Iris seems able to perceive spiritual realities the rest of us cannot. Once a close friend of hers who had moved abroad – I’ll call her Sandra – was especially on Iris’s mind. For weeks, Iris asked me repeatedly how Sandra was doing. In exasperation one day I said, “Let’s phone her and see!” Hearing Iris’s voice on the line, Sandra was incredulous. “You know, I just heard today that my dad passed away. He’s been very sick in hospital for a while now. Thank you so much for calling.”
Another friend Iris took to mentioning incessantly was a woman I’ll call Eleanor. We all got tired of hearing, over and over, how amazing Eleanor was. One day, to our shock, we received news that Eleanor had been diagnosed with late-stage cancer. I wondered if we’d been deaf to an urgent message Iris had insistently tried to convey: treasure Eleanor and pray for her.
When someone like Richard Dawkins looks in on families like mine, he sees only the challenges and assumes all is dark. I don’t blame him for this blindness. Although I love my sister fiercely, she did not always seem a good and perfect gift to me. Growing up, I was sometimes frustrated by the demands her care made on us, and on a few occasions I found myself longing for a “normal” life. I regarded these infrequent bouts of self-pity as harmless and as having no bearing on my fundamental love for her. One day, however, I realized my attitude was not as innocent as I believed.
As a twenty-two-year-old, having left home four years earlier, I was living in Germany with my life before me. Like almost all young women of my generation, I embraced the notion that personal independence and a successful career were the route to happiness. Although I had grown up in a Christian home and still loved God, autonomy and success became part of my creed.
Is it feminist to tell a woman that she is tough enough to kill her own child, yet not tough enough to raise it?
I decided to study midwifery, and as preparation volunteered at an obstetrics and gynecology hospital in the university town of Leipzig. On my first day on duty, I responded to the call bell and found myself in a private room with a woman in her mid-thirties. At the time, I was aware that abortions were legal at up to twenty-three weeks if a doctor diagnosed serious congenital malformations and signed a release for the procedure. I was also theoretically open to the idea that abortion might be justified in certain extreme circumstances – though obviously not for infants with Down syndrome, who (I thought) would never count as “severely disabled.” How naïve I was.
When I entered the room, I did not know a late-term abortion was underway. The patient asked for help in going to the toilet. Though unfamiliar with the protocol to follow, I instinctively ran for a bedpan. Several minutes later, I caught a tiny bluish form – her son, unmistakably a human being, with arms, legs, ears, eyebrows, fingernails. He had died in utero following the injection of a toxic solution, and had then been expelled after nurses induced labor with a drip. The woman, seeing me speechless as I held the bedpan, explained: “The doctor told me it would have Down syndrome. I knew I couldn’t handle that alone.”
She must have sensed my distress. Trying to reassure me, she added: “Don’t worry, I’m not a sissy. I’m tough and I can deal with this.”
I called for a nurse. She clamped and cut the cord, her scissors separating mother from baby in a macabre mimicry of what would otherwise have been a moment of joy. Then she instructed me to place the bedpan in the sluice room where waste was collected. Hesitantly, I asked what would become of it. “Oh, they’ll take it to the laboratory and use the tissue for research,” she replied as she casually covered his remains with a paper towel.
In this hospital, the Premature Intensive Care Unit was located one floor below gynecology. There, no efforts were spared in the often frantic attempt to save twenty-four-week-old babies’ lives. How, I wondered, did a life that was legally defined as a disposable fetus at twenty-three weeks become a human being at twenty-four?
With hours still left on my shift, I tried to pull myself together and act professionally – which apparently worked, since the staff later complimented me on how well I had handled it. But something in me was shattered. If my goals demanded tough choices, I had thought, then so be it. Until now, I had not realized just what the price of choice might be, and who might be forced to pay it.
As the cold reality of what I had witnessed sank in, I was filled with angry questions. If she was “alone,” where was the man who had abandoned her? Had she been pressured by relatives, friends, or doctors? I was angry for the child who had not been able to defend himself, and angry that it was now too late.
If only I had met his mother just days earlier, I told myself, I could have told her about Iris.
But what would I have said? I began to rethink my worldview from the ground up. Is encouraging a woman to believe she is tough enough to kill her own child, yet not tough enough to raise it, really standing up for her best interests? Isn’t this actually just another way of putting a woman’s needs last, so that when all is said and done, she is left to bear responsibility for her child’s death? I began to see how many things in our society must be fundamentally wrong if women feel the imperative to make a choice like this.
What haunted me most were my patient’s words, “I knew I couldn’t handle that alone.” They prompted me to reflect on how my parents had raised Iris. My mother had always had a husband at her side who would allow her, at times, to be weak and to need his help. Theirs was the kind of relationship my patient clearly lacked.
What’s more, my parents had received support from a committed Christian community. Both of them had let go of their careers – my father as a civilian employee of the US Navy, my mother as the director of a kindergarten – to answer a calling to the Bruderhof, where they met and married. That’s why, when Iris was born, they were surrounded by dozens of people who provided practical and emotional support, advice, and prayers. In the years that followed, these were the people who constantly helped us to see the beauty in Iris’s life.
The Bruderhof community in upstate New York in which we grew up (and still live) is like a small village of about three hundred. Here Iris has always had friends her own age and has rarely felt excluded. Since high school, she has participated in the daily life of the community, doing activities suited to her abilities, such as setting tables in the communal dining room or helping in the community workshop, which makes adaptive equipment for other people with disabilities. Because communal living provides a wide diversity of tasks, it’s never been hard to find her meaningful ways to contribute, even though in society at large she might not be capable of holding a paying job.
Members of the Bruderhof don’t earn a salary or have their own bank account; by sharing our resources, income, skills, and workload, we seek to care for each other’s needs. No one is concerned that a person like Iris might be consuming more than she contributes; each member is simply appreciated for the individual he or she is. If Iris gets sick, community members trained as doctors and nurses stand ready to care for her; others will take turns spelling off family members when we need a break. And although my parents do sometimes wonder what will become of Iris when they’re gone, they know that she has community brothers and sisters who are as committed to her as her blood relations.
As I grieved for the mother in the Leipzig hospital and for her son, it dawned on me how much of my family’s reality I had failed to see while growing up. Because Iris and others like her were so naturally integrated into every facet of our community’s life, I had not registered how different her life would have been outside of this environment. For the first time, I saw clearly the scale of the challenges she lived with, challenges that elsewhere might have meant hired caregivers or a care home. I saw too the miracle of how, in a communal life, the gifts that Iris had to offer could be received. She was not only cared for; she was also able to reciprocate. Here, as perhaps nowhere else, she could blossom. “All my life,” I thought, “the works of God have been sparkling before my eyes; it is I who have been blind.”
“People with intellectual disabilities are people of the heart.” —Jean Vanier
In the weeks that followed, I realized that the horror of abortion was something in which I was implicated. I was living in accordance with the ideals of a society fixated on achievement and profit, a society with little room for those who will always be dependent – for people like Iris. In such a world, was it any wonder that a woman might feel she “couldn’t handle that alone”? What hope could I offer her that her child would find a place where his gifts could be received, as Iris’s have been? To be sure, from childhood on I’d known many dedicated families, therapists, and special needs teachers who shower their kids with love. Yet because their heroic efforts are made within a system so radically hostile to the weak, there are few happy endings. How could I credibly ask my patient to welcome a child with a disability unless I could also point her to a completely different way of living – one in which her son could flourish?
I experienced the truth of Oscar Wilde’s words: “God’s eternal Laws are kind and break the heart of stone. ... How else but through a broken heart may Lord Christ enter in?” My heart of stone was broken and Christ entered in, in the form of that tiny, twenty-three-week-old boy. Recognizing that my creed of autonomy and success excluded those who could attain neither, I turned from it and eventually returned to the Bruderhof, where I became a member.
Today Iris and I still form an extended household with our parents. Living with her, I’ve had ample chances to see how a community that includes people of all abilities can be a healing balm for those of us who are sometimes prone to measure ourselves or others by false standards. Jean Vanier, the founder of the L’Arche community, describes it well:
People with intellectual disabilities are not able to assume important roles of power and of efficacy. They are essentially people of the heart. When they meet others they do not have a hidden agenda for power or for success. Their cry, their fundamental cry, is for a relationship, a meeting heart to heart. It is this meeting that awakens them, opens them up to life, and calls them forth to love in great simplicity, freedom, and openness.
When those ingrained in a culture of winning and of individual success really meet them, and enter into friendship with them, something amazing and wonderful happens. They too are opened up to love and even to God. They are changed at a very deep level. They are transformed and become more fundamentally human.footnote
Such a community can be born whenever and wherever we open our hearts to one another’s joys and sorrows and commit to sharing the load. Just as every human being is able to experience happiness, no human being is exempt from suffering. Even eminent scientists like Richard Dawkins suffer. In community, people like Iris can help the rest of us to bear our load. They can help us become more fundamentally human.
So I dream of the day when someone like Iris finds community with Richard Dawkins. I dream of the day when they become friends, two human beings equally endowed with life and love, yet carrying fears, hurts, and imperfections. I dream of the way they would be able share in each other’s sufferings and joys; of the way both of their burdens could then become lighter. On that day, they together would come a little closer to reducing suffering and increasing the sum of happiness.
- Richard Dawkins, “Abortion and Down Syndrome,” blog post, August 21, 2014 at richarddawkins.net.
- Brian G. Skotko, Susan P. Levine, and Richard Goldstein, “Having a Son or Daughter with Down Syndrome: Perspectives from Mothers and Fathers”; “Having a Brother or Sister with Down Syndrome: Perspectives from Siblings”; and “Self-Perceptions from People with Down Syndrome” in American Journal of Medical Genetics Part A, October 2011, 155A(10):2335–2369.
- Jean Vanier, acceptance speech for the 2015 Templeton Prize, March 11, 2015.