My daughter has a disability. I don’t want Jesus to “fix” her.
By Heather Kirn Lanier
Heather Kirn Lanier teaches at Southern Vermont College and is the author of the memoir Teaching in the Terrordome: Two Years in West Baltimore with Teach For America (University of Missouri Press).
I am a skeptic who goes to church on Sundays. Over the past year, I started reading chunks of the Bible every day, and I was surprised by the man I met. I did not encounter the Jesus of my Baptist upbringing, that shampoo-commercial brunette who smiled beside children and lambs. I encountered a Jesus who pushes against the rules of religious and cultural authority. He says, I know your laws. I’m healing on the Sabbath. He says, Scratch your tribal divides, I’m drinking water with a Samaritan woman.
But on the subject of disability, I found a Jesus that is, frankly, disappointing. He usually does precisely what disability advocates rail against. He reinforces the idea that the disabled body is broken, damaged. He treats the disabled body as something to fix.
“Take up your mat,” he tells people who could not walk, and suddenly, they walk. He spits into his hand, touches a deaf man and the man can hear. The sick and lame touch the “fringes of Jesus’ cloak,” and, like that, they are “fixed,” transformed into the likenesses of their able-bodied brethren.
“I’ve got a bone to pick with Jesus,” I said to my husband, an Episcopal priest. “Why does his primary miracle have to be un-disabling the disabled?”
My husband conceded the problem, noting that Jesus often operated within the constructs of his time.
Not damaged goods
Five years ago, my husband and I had just begun life as parents when we discovered our baby had an ultra-rare syndrome. One night, as she was sleeping upstairs, we talked at our dining room table. I hedged around the unsayable for a few minutes and then went straight for it: “What will she do when she gets older? Bag groceries?”
I said this as though working as a grocery bagger were a tragedy. I would not have said this to any other person because I knew that such statements were snobby and ableist and disparaging of grocery baggers. But my kid had just been diagnosed with a chromosomal condition that in most cases led to intellectual disabilities. And so, it turned out I was snobby and ableist and disparaging of grocery baggers. I had to admit this aloud so I could excise it from myself.
My husband’s reply was a plain sentence of ferocity and kindness. “She’s not damaged goods,” he said. In four words, he named the prevailing attitude toward people with intellectual disabilities—that they are broken—and he kicked that attitude out the front door of our home.
“Of course she’s not,” I said quickly. But inside I heard another response. She’s not? It was a real question. And in reply to thisquestion, two voices emerged inside me.
One voice said: Yes, of course, she’s damaged. She’s missing a chunk of a chromosome. It broke off during meiosis and it makes her small and epileptic and delayed. If you could fix every one of her cells, if you could find that small tip of her fourth chromosome and put it back, you would.
But just as this answer formed, a second one arose. It said simply: No. She’s not “damaged goods.” She’s good and she’s whole and she’s holy. This second voice did not mean that my daughter was “special” or “angelic” or any of the other tropes of disability. It just meant she was good and whole and holy simply because she was human.
That was five years ago. Since then, the second voice has only gotten louder and clearer. I hear it when I watch my 21-pound 5-year-old strut across the living room, swinging her left arm in an exaggerated saunter. I hear it when my daughter squeals with delight because life contains cheese and hats and Elmo. I hear it when my girl snuggles against my chest before bedtime. “I love you,” I say, and her sapphire eyes look up at me, and she says with a long whisper, “Yeaaah.”
Today, my daughter is a mostly nonverbal, toddling kindergartener, bounding with light and learning alongside typical peers twice her size.
She’s good and she’s whole and she’s holy. This voice is as weighty as the seismic hum of the planet.
Yet since my daughter’s diagnosis, I have heard that first voice in the cultural buzz all around me. The voice that says my daughter is flawed, imperfect, in need of fixing. I hear it when people describe a newborn baby’s features as “birth defects.” I observe it when looking at the way terms for “intellectually disabled” eventually become insults. Moron. Retard. Mentally challenged. Soon, maybe, special needs.
I hear that voice when internet comments assert that people with any kind of disability shouldn’t have children, or shouldn’t take up valuable resources or shouldn’t be alive. I hear that “damaged goods” voice when Princeton ethicist Peter Singer argues that babies with disabilities can ethically be killed.
I hear that obnoxious buzz when a candidate for the country’s highest office bends his wrist, throws his hand against his chest, shakes his body around and slurs his words. “You should see this guy,” he says of a reporter with physical disabilities. “You should see this guy.”
And I hear that voice, loud and clear, when that candidate is voted into office.
The disabled body is less than. This is the cultural message.
Whole and holy
But one place I did not expect to find this message is in the words of the man that two billion people on the planet worship. For months, I held a grudge against Jesus, deciding that the Son of Man was a horrible disability advocate. Eventually, though, I learned that the Gospel of Luke, which contains many of Jesus’ healings, was most likely written by a doctor.
“Back then,” my priest-husband said, “people didn’t make the same distinction between the body and the soul like many do today. In the mind of Luke, the body and the soul are one unit. So whenever there’s a healing going on, the spirit is also healed. That was part of the worldview.”
My husband was saying that, in order for the Gospel writer to convince his audience about a healed soul, there had to be a healed body.
Two thousand years later, we still see the residue of this flawed body-soul logic in our culture. People with visible disabilities often describe being accosted by religious strangers. On the blog “Planet of the Blind,” Stephen Kuusisto writes, “It’s peculiar when I meet a stranger who finds herself or himself driven by who knows what compulsion to say: ‘Can I pray for you?’ This happens more often than one may think.”
On the blog “Bad Cripple,” Bill Peace writes, “Many people have prayed for my poor crippled soul.... I have been told repeatedly that I am paying for grievous sins my parents committed. My miserable existence is God's punishment to hurt my parents. Little old ladies sitting in wheelchairs come up to me in church and tell me they are praying for me and that I should not worry: ‘God will cure you. You will walk again.’”
My daughter attends church every Sunday, and, thankfully, no one tries to heal her. But I still seek a more promising disability theology. And as I continue reading the Bible, I notice something about Jesus’ many healings. He seems hesitant to do them, annoyed even.
When a father asks him to cure his child’s epilepsy, Jesus says, “How long must I put up with you?” After digging his fingers into a deaf man’s ears and touching the man’s tongue with spit, he sighs to the heavens as if to say enough of this. Even though theologians will tell you it is a calling down of the spirit, I read it as frustration. He seems sick of it, the incessant demand to heal. The healings, I think he is saying, are not the point.
In The Disabled God, Nancy L. Eiesland notes that Jesus’ body is not perfect after he is resurrected. According to the written accounts, Jesus is not some ethereal figure of light, some divine translucence after his resurrection. He is flesh. He is bones. And he has wounds. He has the slash on his side, the holes in his hands. From the ordeal of his crucifixion, Ms. Eiesland argues, his body has been in some small way disabled.
She argues that, to boot, when Jesus returns to his friends, he upends the belief that disability is taboo. He says, “Peace be with you,” and then, “Stick your fingers in my side.” He encourages them to touch his wounds.
“In so doing,” Ms. Eiesland argues, “this disabled God is also the revealer of a new humanity. The disabled God is...the revelation of true personhood, underscoring the reality that full personhood is fully compatible with the experience of disability.”
Whether or not you believe the seemingly absurd story that a divine reality decided to meet humanity on foot, walk among people, die and then walk again—the heart of Ms. Eiesland’s argument is compelling: Disability is part of our wholeness.
Call me faithless, but the tip of my daughter’s chromosome will never appear in every one of her cells. But I do not want anyone to “fix” my kid. That is not the miracle I seek.
Instead, I want someone to lay hands on the people who presume she is less than. I want someone to eradicate the idea that bodies are either productive or burdensome, that they either contribute to the gross domestic product or drain it. I want someone to lay hands on the president for doing what an apologist later called “the classic retard.” I want some mystical savior to eradicate the assumption that disability is a curse, a calamity.
Wouldn’t that be the bigger miracle?