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Made Perfect
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Mary’s Song
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The Art of Disability Parenting
When Merit Drives Out Grace
Meritocracies assume that economic productiveness is the highest value. That’s why they fail.
By Amy Julia Becker
December 13, 2021
Available languages: Español
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When I was twenty-eight years old, I gave birth to our first child, our daughter Penny. Penny was diagnosed with Down syndrome in the hospital, and the doctors told us she would have both intellectual and physical disabilities. She would face a litany of health complications. She would need physical, occupational, and speech therapy. She would be measured on a different growth chart than typical kids, and she would learn on a different timeline. She would, in short, be “delayed” throughout her life.
Much as GDP has become the way to quantify national well-being, timelines have become the modern measure of human development. New parents receive a list of milestones children are expected to achieve within a standardized time frame. These lists and charts can be helpful – identifying kids with developmental delays offers the prospect of early intervention, which often provides support for families, identifies underlying medical concerns that could impede growth, and opens up possibilities for learning. Still, I experienced both fear and shame when I heard the word “delayed” pronounced over my infant daughter.
I now see that this emotional weight pressed down not because a slower course of development was inherently shameful or scary. Penny was healthy – she came home from the hospital after two days. She ate. She slept. And within a few months, she smiled and gazed up at us with her big sparkling blue eyes. She was happy and learning and growing. Slowly. The anxiety I felt about her developmental pace didn’t arise from distress over her well-being. It emerged from my adherence to the warped values of a culture beholden to urgency and accomplishment above all else, the warped values of the meritocracy.
In theory, in a meritocracy, hard work leads to elevated socioeconomic status and stability, and such status and stability is available to all talented hard workers. In recent years, much ink has been spilled over the realization that meritocrats aren’t much different from the aristocrats of the past. I, for instance, have always worked hard. I also have White, married, college-educated, financially stable parents. I have both inherited and achieved their same level of education, economic stability, and social standing. In a meritocracy, social advantages can look like the reward of hard work, even if they really are inherited.
Books like William Deresiewicz’s Excellent Sheep (2014) and Daniel Markovits’s The Meritocracy Trap (2019) have identified both the ways in which the meritocracy excludes deserving workers and how its values fail to satisfy those within it. The philosopher and Harvard professor Michael Sandel’s recent contribution to the discussion, The Tyranny of Merit (2020), goes even further in its examination of the injustice of these values and the impossibility of perfecting a meritocratic system of reward. “The problem with meritocracy is not only that the practice falls short of the ideal,” Sandel writes, but that “it is doubtful that even a perfect meritocracy would be satisfying, either morally or politically.”
These books argue that the system is functionally closed. It cuts off most (not quite all, keeping the myth of mobility alive) of the people who are not already within its demographic fold. Meritocrats are indeed talented hard workers, by and large. And yet what gets them – us – to the top is not hard work. It is birth. Wealth begets wealth. Power, power. Ballet class begets ballet class. Advanced Placement courses beget Advanced Placement courses and SAT prep sessions and summer enrichment and service opportunities.
I now see that many factors other than hard work helped propel my family up the socioeconomic ladder. There were many generations of homeownership. My parents and grandparents all went to college. My parents had stable jobs with two salaries before I was born, and they, like their parents before them, had enough economic stability for my mom to stay home with the kids while we were young. I inherited a body type, hair texture, and facial features that our culture deems advantageous. Being White helped me without my knowledge – in getting a bank loan, applying for work, encounters with the police. I always looked back at my family and saw a legacy of Yankee thrift, philanthropy, and service. I didn’t see that having access to education, to jobs, to social clubs, and to housing all came at least in part through unspoken factors like my last name and my pale, freckled skin.
I could tell a true story of hard work and avoid the equally true story of unearned, unjust favor that propelled the accumulation of capital for our family over hundreds of years. Sure, I could have squandered my opportunities, but that I had them is the point.
A second problem is that the meritocrats aren’t happy. The relentless pursuit of achievement and advantage engenders anxiety, which often manifests itself in working harder. We keep working to maintain our status and to ensure our children have what they are supposed to have – piano lessons and tutoring and international travel – only to face despair. Suicide, substance abuse, clinical anxiety, and depression all occur at high levels among the meritocrats. These signals of deep dissatisfaction send a warning that this life of relentless hard work, entertainment, affluence, busyness, restlessness, and achievement does not accomplish much that matters.
Penny’s birth slowed me down, and moving at her pace has often felt like a sacrifice. The reward is being with her.
In Sandel’s view, meritocracies are bound to fail not because they can never live up to their own ideals, but because they rest upon a foundational assumption that GDP defines the common good, that economic productiveness is the highest value for society. Sandel traces the history of meritocratic ideals through Protestantism and western philosophical traditions. In his lengthy discussion of Friedrich Hayek’s capitalist philosophy, he comes to a concise conclusion: “[Hayek] does not consider the possibility that the value of a person’s contribution to society could be something other than his or her market value.” Reducing humans to their earning potential is dehumanizing, and it fails to consider non-monetary contributions that individuals make within their families and communities.
I support economic policies to expand the middle class and open up access to education and employment for people who do not share my inheritance of Whiteness, wealth, and stability. But even if our nation opens the doors of the meritocracy, even if we live into the promise of the American Dream, where exactly will those dreams carry us? The endless accumulation of status, wealth, power, and knowledge hasn’t satisfied those at the top of the socioeconomic ladder, and never will.
By the time Penny was two, we had a whiteboard in the living room. In each marked-off section – PT, OT, speech, and learning – I listed the exercises and prompts assigned by the various therapists who each came for an hour a week, teaching me how to incorporate movements and sounds and stimulation into every aspect of every day. As a result, mornings became a study in guilt. I could never keep up with the list, and trying to pass all that information to the other caregivers in Penny’s life – my husband, my mother, the babysitter, the day-care workers at the little school she attended twice a week – felt even more daunting. Eventually I decided to select one essential item from each quadrant. This week, we are working on sipping from a straw, putting blocks on top of one another, and standing up. All we are focused on is learning the next thing.
The list became another way to measure Penny’s accomplishments. Each developmental milestone was broken down into components, and Penny needed to learn and repeat those steps one at a time. Things that just happened for other kids didn’t just happen for her. She had to learn. She had to be taught. With repetition. Slowly.
Caring for any human being requires slowing down. Taking action to love ourselves and others in and through our vulnerable bodies, with our real and daily and often uncomfortable needs, always takes time. Raising a child with Down syndrome or other special needs takes more time. More doctors’ appointments. More therapists. More repetition before learning anything new.
My adherence to the values of achievement and advancement placed a sense of urgency on getting Penny to learn, even if the milestones set for her were different than those for typically developing kids. But our economic position also gave me the freedom to stay home with Penny. My husband Peter’s employer provided health insurance for our whole family. The state of New Jersey provided the weekly therapy and preschool. I was able to work part-time and also spend a lot of time with our daughter. In the end, our position within the meritocracy opened up possibilities for me to learn a whole different way of being in the world.
We celebrated Penny’s fifteenth birthday this year. I know now that the whiteboard with its list was as much my own anxiety as a first-time mother and my acquiescence to an achievement-oriented culture as it was great parenting. There are still days when I find myself worried about Penny’s achievements, assessing her development in reference to books and charts. And I still find myself resisting what she nevertheless has begun to teach me: a new way of being in time, a way of waiting, of slowing down, a way that privileges place over speed and relationships over productivity.
Penny’s birth slowed me down, and moving at her pace has often felt like a sacrifice. But she also has shown me that my fast-paced life is part and parcel of the anxiety-ridden, accomplishment-based ethos that has plagued so many people like me.
At the end of 2019, we traveled as a family to a succession of national parks – Yosemite, Sequoia, Death Valley, Grand Canyon, and Joshua Tree. Penny had worked to prepare herself – we took a mile-long walk after school in the months leading up to our trip, and we hiked every weekend. But the parks brought unfamiliar terrain. Many paths were rocky and uncertain. Our younger two kids could scramble their way ahead, and their bodies only tired if their enthusiasm waned. For Penny, every step felt like a risk. With her low muscle tone, she might trip and fall or lose her balance or lose her way. She needed to take it slowly. Some days, the whole family chose to go at her pace so we could stay together. But I also volunteered on occasion to stay with her while the rest of the family moved more quickly.
I might be expected to say here that slowing down offered me an opportunity to experience the beauty of my surroundings, to stop and smell the proverbial roses. But I didn’t enjoy better views. Penny and I weren’t more likely than her siblings to see an elk. In fact, slowing down meant missing out on some spectacular vistas. Without Penny, I could have seen more, done more, accomplished more.
The reward of slowing down was not a newfound appreciation for the foliage or the rock formations. The reward was being with her.
The apostle Paul wrote two thousand years ago that love is patient. People still quote these words at weddings; the same lofty thoughts can be found on plaques in HomeGoods and posters in Target. But I don’t think we realize how deeply countercultural Paul’s statement is. We like the sentimental idea of love, but the practice of patience is contrary to what modern life rewards.
Love is patient. Love takes time. Love depends upon slowing down. As theologian John Swinton puts it in his 2016 book Becoming Friends of Time, God’s way “is a way of being in the fullness of time that is not determined by productivity, success, or linear movements toward personal goals. It is a way of love, a way of the heart.”
The meritocracy is built upon busyness and accumulation. It excludes the majority of people, and even those it includes are not satisfied with what they have or who they are. And no wonder – the values of the meritocracy are antithetical to love, to being present and attentive with care for others, no matter the cost.
Penny was diagnosed with a “disability” when she was born, and I still use that word to describe her condition because it is the easiest way to convey the truth that she moves and learns and processes information more slowly than typical kids. And yet the word that seems more appropriate as a descriptor of Penny’s experience of the world is “vulnerable.” As a baby, her body was more vulnerable to disease and infection than other children’s. She is and always will be socially vulnerable – kids or adults could deceive her or take advantage of her easily. But vulnerability is not a flaw in her character or a defect in her humanity. In fact, it is an aspect of her humanity that helps me better understand who I am, who we all are. Achievement and affluence have helped me hide my vulnerability. Slowing down with Penny has helped me embrace vulnerability as essential to who I want to become.
One day I was driving with our son William, and we were talking about how we all need things that other people can offer us. William was honest. He said, “Mom, I’m not sure what Penny has that I need.” William is now a full foot taller than his older sister. He is stronger and faster. He works diligently in school. On the merits of the meritocracy, he, like his mother, needs little. William often helps Penny out. He reaches the popcorn box on the top shelf. He pours the pasta water into the colander. He will even put her hair in a ponytail if she asks.
I told him about how I have received things I need from Penny and how he might find the same to be true. I talked about how I tend to take everything, especially myself, very seriously, and one thing I admire in Penny is her ability to laugh at herself. When this happens, she isn’t making fun of herself. She’s just enjoying the humor of admitting a mistake instead of beating herself up about it. I talked about how she doesn’t get anxious about schoolwork and how she doesn’t manipulate other people to get what she wants. How she always remembers if someone has been injured or sick or has a wedding or birth to celebrate. How she prioritizes people over getting things done.
To be clear, Penny has plenty of moral failings, many of which reflect the spirit of our age. She spends hours on her recently acquired iPhone scrolling through Instagram. She rolls her eyes at me when I suggest she turn off YouTube and enjoy the sunshine. She often insists on her own way, especially when it comes to watching a movie. But she does live according to values that aren’t considered valuable by the meritocracy. Those values emerge not out of a need for self-advancement, but out of a simple desire to love and be loved. William and I, of all people, need the gifts she brings.
Michael Sandel’s critique of the meritocracy is not a religious argument, but he nevertheless sums up the problem of a meritocratic culture in spiritual terms when he writes that “merit tends to drive out grace.” And, I would add, to drive out love. Our culture of consumption and accomplishment is built on self-protection and defensiveness, on buying what we want and selling what we have to in order to prove ourselves. Love is built on the vulnerability of giving and receiving. Much of our busyness, distraction, purchasing, and entertainment protects us from admitting our vulnerability, our dependence. Much of our modern culture protects us from love. But if we are willing to move at a slower pace, if we are willing to shed the trappings of achievement and accumulation, we will find a way of being in the world that is vulnerable and open, willing to receive whatever gifts might come our way, without making demands, without needing to possess or achieve.
For the past few years, I have taken to sitting in silence every morning. Sometimes it is a five-minute practice of letting go of my anxious thoughts about the day ahead. Sometimes I manage twenty minutes. Rarely are these moments blissful. They almost always feel like a conscious struggle to learn how to sit still, how to move slowly, how to relinquish production and receive grace. They feel like an elementary lesson in paying attention, being present, learning patience, an elementary lesson in love. That time of stillness often feels like a fight, but it is a fight that carries into the rest of the day a gentle whisper inviting me to continue to let go and slow down. Those moments translate into conversations with our kids about who they want to be, rather than what they want to do, in ten or twenty years’ time. They prompt me to notice the tree outside my window, the moon hanging low in the sky, the warmth of my daughter’s hand in mine. They prompt me to pause before I place another order on Amazon. They prompt me to reach out to people who don’t have families of their own. They prompt me to give, to share, to love, and to notice again that love is its own reward.
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Elizabeth Bradley
A ‘thank you’ to Amy for sharing some of her challenges in raising Penny, her daughter disabled (Amy’s intentionally used word) with Down Syndrome. The subtitle of the article states, “Meritocracies assume that economic productiveness is the highest value. That’s why they fail.” I’ll go one step further. They fail because they are not God’s plan for us. We are not judged by God based on our merits, nor should we base our judgments of others on what we perceive to be their 'earthly' merits. We are designed by God, in His image, with a blueprint for what’s important, what we should focus on, and how to live in this world, both within ourselves and without, in society. And there is not much overlap between the messages of Jesus and those of the world. Indeed, St. Augustine reminded us that “You have made us for Yourself, O Lord, and our hearts are restless until they rest in You.” When Jesus went to Mary and Martha’s home, and Martha was all a-flutter with expectations of what she thought she should be doing, He reminded His good-hearted, but a bit off-course, hostess that “Mary has chosen what is better, and it will not be taken away from her.” Unfortunately, we have to navigate this earth in physical bodies, and so we must constantly reassess what society says we should be pursuing ... and, instead, forcibly ‘be still and know...’ At the close of her article, Amy well captures the oxymoron attempting to do just that. Still, we try ... because we should ... and we need to. And it is what we were created to do.
Charles Emory Burton
When Plough's winter issue arrived, my eye fell on "When Merit Drives Out Grace," by Amy Julia Becker. She questions the assumption that economic productiveness is the highest value for society, and writes about this in light of her experiences with her daughter, who has Down syndrome. She shows that to view accomplishment above all else is antithetical to love, to being attentive with care for others. People are more important than getting things done. It's a wonderful insight.