The Barrier of Status
Today I'm featuring an excerpt from Amy Julia Becker's new book, To Be Made Well: An Invitation to Wholeness, Healing, and Hope. I got to read a early version of To Be Made Well and was intrigued by what she's doing in this book and I think you'll be too. I'm talking with Amy Julia about the book on Monday. See the details below about how you can join us for that conversation.
The Barrier of Status
Excerpt from Chapter 9 of To Be Made Well.
When they came to the home of the synagogue leader, Jesus saw a commotion, with people crying and wailing loudly. He went in and said to them, “Why all this commotion and wailing? The child is not dead but asleep.” But they laughed at him. (Mark 5:38-40)
Five of us sat around the table: my husband, my mother, myself, and two medical students who had been assigned to eat dinner at our house. One of the students said, “My parents always wanted more for me—a better education than they had, and a better job, and a higher salary. A better life. So, isn’t it hard to have a child with a disability? Don’t you want so much more for her?”
These young men were in the midst of a pediatric rotation, and this was their one and only day to learn about children with disabilities. I held three-year-old Penny on my hip as we greeted them at the door in the late afternoon. “Hi,” she said, her neck craning to see their faces. Soon enough they were sitting cross-legged on the floor, with Penny pouring tea and offering “tookies.”
They spent an hour playing, and once Penny was in bed, we ate together and talked about our family. As the night went on, these prospective doctors grew more and more candid. They told us that earlier in the day they had been asked to consider four different types of disability: spina bifida, cystic fibrosis, Down syndrome, and disfiguring burns. If they were a parent, which one would they want most and least for their child? In ranking those four categories, they had marked Down syndrome as the least desired.
I felt a tightness in my chest as they described that ranking system and their response to it. I felt both the pain of their implicit rejection of our daughter and the pain of how deeply I understood that rejection. The pain of a medical system that even in an attempt to expose discomfort and prejudice reaffirms it. I don’t know how I would have answered the same questions in their situation, but I do know that I once walked around with a hierarchy of human beings that implicitly guided my own thinking and behavior. I saw myself as someone near the top of those rankings. And if I was honest, I saw all sorts of other people as those who filled in rungs further down the social ladder.
I constructed an identity around my social position, just like these young men. That identity came from having an able body and access to education. It came from being a white person in America with affluent, married parents. When I applied for a spot at an Ivy League school, I filled out the form that indicated my grandfather had been a student there, too, fifty-five years earlier. When I applied for internships, I relied on the connec- tions of family friends who already worked in Manhattan. When Peter and I wanted to buy our first house, we didn’t have trouble securing a loan. It seemed like we built a foundation for our life from responsible decisions and hard work, but in reality, that foundation had been given to us without any work on our part at all. We inherited a set of unearned social advantages that perpetuated themselves. Education begat education. Wealth begat wealth.
But when Penny was diagnosed with an intellectual disability, I could not give her this same inheritance. The fact that she was born into our particular family did set her apart from other, less fortunate, kids—she received healthcare and a mother who could work part-time indefinitely and drive her to doctor’s appointments and therapy sessions. She inherited the stability of our household and the “language rich” environment that came with her parents’ love for books. She received many unearned social advantages. But she also received—by no effort or fault of her own—the distinctive physical characteristics and cognitive capabilities of a child with a third copy of her twenty-first chromosome. Penny’s unexpected and unearned social position brought me face-to-face with the harm of a social ranking system I had never questioned too deeply before.
For the first few years of Penny’s life, I thought my job was to advocate for her and for all vulnerable kids who were similarly excluded from access to school or religious com- munities or social experiences because of disability or race or ethnicity or socioeconomic status. I pushed for inclusion in swim lessons and dance class. I became more progres- sive in my view toward healthcare policy. I voted for the politicians who advocated for universal preschool because I now believed every kid deserves access to learning during those early years of brain development. I wrote about the harm inherent in the words retarded and abnormal. I pointed out the problems with a medicalized view of humanity.
I advocated fiercely for Penny, for other kids with disabilities, and for other vulnerable kids more generally. I saw inclusion as the goal. I wanted to knock down the social barriers to a world that excluded Penny but welcomed me. I wanted to invite her in. I worked to give her, and other kids like her, a hand up the ladder, so to speak.
I saw the way this social hierarchy harmed Penny and yet I failed to see the way that same hierarchy was harming me. As I spent more time with Penny and more time interacting with other people with disabilities, I began to recognize that the harm of social exclusion was mirrored by the harm of social isolation. I lived in a bubble of homogeneity that isolated me from the beauty, goodness, and diversity of humanity. I failed to understand the value of the people outside my own social world, and in so doing, I failed to understand the fullness of our shared humanity. Just like those young men at our kitchen table.
When they told us about the ranking they had been asked to do in class, and when they admitted that Down syndrome was at the bottom of their list, they did so because being in our home had changed their understanding of what it means to live with Down syndrome. When they left, they told us they were grateful for the evening not so much because it influenced their career as doctors, but because it had changed them as individuals. They had been humbled by the opportunity to come to value another human being, in this case a human being with Down syndrome. One of them flushed red as he said, “I would love to have a family just like this.”
I could envision Jesus at our kitchen table telling those students that for all their hard work and good grades and accolades, they weren’t any more important than this little girl with glasses, a speech delay, and a hearing loss. I could envision Jesus explaining that they each had something of equal worth to contribute to God’s work in this world. The kingdom of heaven had come among us, for just a moment, when those students saw Penny as a gift, as a beloved child. A little act of repair happened when we bridged that dividing line between patient and doctor, intellectually astute and intellectually disabled, between those admired and esteemed by our society and those deemed “abnormal” and undesirable.
From what the Gospels tell us, the religious leaders were the least likely people to receive Jesus’ message. They were also the least likely to experience Jesus’ healing. In their culture, more so than ours, religious leadership was a hallmark of social standing, kind of like being a CEO of a company or the mayor of a town. These respectable, powerful, relatively wealthy and educated people were the most likely to ignore, avoid, or reject Jesus—unless, like Jairus, something made them aware of their need for everything Jesus had to offer.
We can guess that Jairus was earnest and good and hardworking. He was a man with a reputation to preserve. He had social status as a religious leader. For him to kneel, publicly, at the feet of a controversial, poor, renegade preacher would not help his standing in the community. But he was desperate. His daughter was dying. Love pushed Jairus through the barrier of social status. Love gave him access to Jesus. Love gave him access to healing.
Most of us want to rely on our own sense of self-sufficiency and independence rather than turn to Jesus for help. For me, for Jairus, the trappings of status erect a barrier to admitting our need. Respectability, power, wealth, esteem. All of them can keep us from understanding our need for healing. Jesus himself says, “It is easier for a camel to go through the eye of a needle than for someone who is rich to enter the kingdom of God” (Mark 10:25). Social status erects a spiritual wall within our souls.
I can’t shake the thought that Jesus wanted Jairus to encounter the bleeding woman on his way home to his dying daughter. Not only to see Jesus’ love and care for this outcast woman. Not only to witness how Jesus disregards social divisions and dismisses categories of exclusion. But also for Jairus to see his own connection to a woman he would have considered beneath him. To see their common humanity. Their common vulnerability and desperate need. Their common belovedness.
I wonder whether Jairus stood on the sidelines and watched as Jesus cured this woman of her bleeding, called her Daughter, commended her for her faith, and sent her out in peace. I wonder whether Jairus witnessed something that called to his own humanity, that bridged his society’s dividing lines, that opened up new possibilities for healing. I wonder whether Jesus cared not only about healing Jairus’s daughter of her illness but also about healing Jairus himself of the invisible wounds that come from standing atop a social hierarchy and looking down on those below.
Over the course of these past fifteen years of starting to unlearn the Western value system that says my social status gives me worth, I’ve started to see the harm done to all of us through these social hierarchies. I’ve begun to understand how unearned social advantages lead to unjust social divisions. I’ve also begun to see how those divisions erect barriers to healing. Jesus offers healing to everyone, yet he also recognizes that whole groups of people don’t understand their own need for that healing, and unless they can recognize that need, the barriers to healing will remain in place.
The tragic irony behind so many of our social divisions becomes clear when we see the ways they harm everyone—including those who seem to have materially benefited from them. Decades ago, reflecting on his own position as a white southerner, Wendell Berry wrote, “If white people have suffered less obviously from racism than black people, they have nevertheless suffered greatly; the cost has been greater perhaps than we can yet know . . . the wound is there, and it is a profound disorder, as great a damage in his mind as it is in his society.”1 Berry writes about the distortions that come to us as individuals and as a society when we fail to recognize and receive one another in our common and full humanity.
More recently, in The Sum of Us: What Racism Costs Everyone and How We Can Prosper Together, Heather McGhee has argued that structural racism within the United States has adversely affected everyone economically, socially, and as a civic society. To cite but one of her multitude of examples, she explains how the integration of public pools led many communities to shut their pools down altogether. Neither Black nor white children could swim. “A once-public resource became a luxury amenity, and entire communities lost out,” she writes.2 Because of the barrier of social status, everyone lost. On both the level of our abstract humanity and the level of our pragmatic decisions around creating safe communities, our refusal to acknowledge and receive one another across social dividing lines harms us all. To repair the harm of individual and structural racism and other unjust social divisions, we will all need to receive healing.
1. Wendell Berry, The Hidden Wound (Berkley, CA: Counterpoint, 1989), 3–4.
2. Heather McGhee, The Sum of Us: What Racism Costs Everyone and How We Can Prosper Together (New York: Penguin Random House, 2021), 28.
(From To Be Made Well by Amy Julia Becker. Used by permission of Herald Press. All rights reserved.)
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