When my nine-year-old son Benji was an infant, we were out and in of hospitals for the primary few months of his life. He suffered from focal motor seizures and received innumerable pokes and prods to work out the suitable medication and dosage to get them under control.
Then, one grey and rainy November afternoon—amid countless sleepless nights, doctor appointments, and learning tips on how to be parents for the primary time—we received a call to establish an appointment with a geneticist about our son’s newly discovered diagnosis: 1p36 deletion syndrome. We were told to not Google anything, but in fact we Googled every thing.
Before the appointment, my wife and I prepared several big questions, including: Is this hereditary? Is this degenerative? What else do we’d like to find out about this syndrome?
On the day of the appointment, we arrived early and waited expectantly to satisfy our curious and anxious minds. The specialist was behind and arrived late, even by doctors’ standards. He got here into the small office, still talking on the phone. A number of moments passed while he finished his conversation. Then he hung up, saying Goodbye after which Hello to us in what felt just like the same breath. He tossed his phone and a folder on the table before slumping into the chair.
After we asked our questions, he flipped open the folder to glance on the papers before closing it quickly. A faint buzzing noise prompted him to reengage his phone and reply with a text. Then his phone hit the table for the second time in lower than a minute. He straightened up and leaned forward barely. After glancing at us, at our infant son, after which back to us, he said:
This is your life now. You just must love him as he’s. The information on this folder has all of the answers I could offer you.
He slid the folder to our end of the table after which stood up from his chair. And after one last glance at us and Benji—almost as soon as he had entered—he left the room with our questions unanswered. Inside the folder was the identical journal article we had found through our forbidden online search weeks earlier. It seems we were told to not Google the diagnosis beforehand because it could steal the expert’s thunder. But the reality of the maxim this meeting might have been an email was epitomized on this transient and cold exchange.
My wife and I still remember how unhelpful, even harmful, that first meeting was. And yet even a broken clock is correct twice a day—and sometimes words of helpful and enduring wisdom can come from someone as uninterested as that expert: You just must love him as he’s.
A number of months later, on a warm evening in San Diego, I sat with my sleeping son in a hotel room at a conference for families with “1p-ers” (as we affectionately call the tongue-twisting diagnosis). My wife was out for the night with the opposite mothers while I used to be sitting under a dim reading lamp, working my way through Andrew and Rachel Wilson’s book The Life We Never Expected.
One insight about addressing God in our prayers as “our Father” was particularly moving for me as a son of the Father who was learning to be a father to my son. The book said, “Everything I say in the remaining of my prayer is founded on the reality that God is sweet, desires to do me good, and can do me good—so if God doesn’t immediately give me what I’m asking for, then it’s because someway there’s something higher.” And I wept, not because Benji is who he’s—he’s truly a delight—but because I used to be grieving a life as his father that I’d never expected.
As time passed, nonetheless, I discovered myself grieving my unexpected life less and delighting in my son more. Sure, the occasional observations of other children his age leaping and bounding past him in developmental milestones would trigger momentary pangs of disappointment and concern. But for probably the most part, I used to be just attempting to get to know and understand my son.
The biggest teachers are those that poke and prod us to ask higher questions than those we’d assumed were “essential.” And the longer I even have hung out with this sweet, blonde-haired, blue-eyed boy, the more he has taught me about myself, life, and God.
One of the primary questions my son prompted me to ask was in regards to the imago Dei and what it implies that humans are made within the image of God. Did my son have less of God’s image than the remaining of us due to his genetic deletion, chromosomal abnormalities, developmental delays, and other exceptionalities? This isn’t the sort of query you say out loud in polite company—however it was one I wondered about, and I think others have too.
In this regard, I’ve been helped by biblical scholar Carmen Imes’s insights in her good book, Being God’s Image. According to the Bible, she argues, human beings aren’t just made in the image of God—they are the image of God.
In her book, Imes points out that the Hebrew word translated as “image” can be used to explain idols: The “imago Dei is concrete. Like a statue that represents a king or a deity, so humans represent Yahweh to creation. Being God’s image is our human identity,” writes Imes, which suggests “God’s image shouldn’t be something we bear; it’s something we are” (emphasis mine).
From our earliest stages of development to our final breath, we human beings are ourselves a physical representation of God’s presence on earth by virtue of our concrete existence alone. “Although our status as God’s image may result in certain actions, ‘image’ shouldn’t be something we do, but who we’re,” Imes says, and it’s not “a capability that may be lost”—mental or otherwise. There’s nothing we’d like to do or turn out to be to be qualified to represent God.
And so, I confidently say my son is imago Dei, just as I might for anyone else. Yet one other query my son has prompted me to ask is, How intentional and purposeful is my son’s genetic deletion in God’s sovereign will?
When we expect in regards to the human experience, Bible folk are quick to cite Psalm 139, which tells us that we’re knit together in our mother’s womb and that we’re splendidly made. But I’ve asked myself, How comfortable am I inserting my son’s name where the psalmist says “me,” “my,” and “I”? How purposefully and splendidly was my son knit together in my wife’s womb? Would I say this stuff about my son without exceptions or qualifications?
One of my biggest hang-ups about seeing Benji as fearfully and splendidly knit together was the indisputable fact that he was missing genetic material. I wrestled with whether the numerous implications and issues stemming from such a microdeletion was the results of God’s intentional design.
But in a Torah Tuesday episode from Carmen Imes on Exodus 4:10–12, I used to be reminded that God doesn’t shrink away from the disabilities experienced by his people. In fact, as surprising because it sounds, God takes the credit for disabilities similar to deafness, muteness, and blindness. In this text, Moses raises an objection to his commissioning by describing his ineloquence and, moreover, by rooting his ineloquence in being “slow of speech and tongue” (v. 10).
In their article “Mosaic Disability and Identity in Exodus 4:10; 6:12, 30,” Jeremy Schipper and Nyasha Junior show that the Hebraic phrase for “slow of speech and tongue” is a term for a physical disability present in ancient medical texts. And in response to Moses’ grievance about his speech impediment, they are saying, “God responds to Moses by assuring him that God controls all physical conditions.”
God’s response to Moses’ objection clarifies God’s intentionality in the various mosaic of human (dis)ability. The intentionality of disability may be disconcerting for a lot of, to the extent that seeking to individuals with disabilities after reading Psalm 139 or Exodus 4:10–12 tempts us to wonder—as Adam and Eve did within the Garden—did God really say … ?
However, if all individuals are imago Dei (Gen. 1:26–27), and if everybody is splendidly woven together and designed purposefully by God (Ps. 139:13–15), and if God takes credit for the lived experiences of our disabilities (Ex. 4:10–11), then we stand on stable biblical ground to claim that—while my son is a born sinner like everyone else this side of Eden—he can be who he’s by God’s design.
Will we love him as he’s? As frustrating because it was to listen to this from an under-prepared and overly distracted specialist, these words are instructive for the church today. North American society is usually unwelcoming in its approach to the disabled community—and sadly, the church is usually worse.
In her punchy and profound book, My Body Is Not a Prayer Request, Amy Kenny discusses the ableism she faces within the church as a lady with disabilities. She laments that local churches are amongst probably the most difficult spaces to inhabit for individuals with disabilities. In one place she says, “I’m hurt that I need to justify my very own existence at church. Belonging shouldn’t have the admission price of assimilation.” Kenny is true, and I’m thankful for her advocacy.
As a pastor throughout the local church and the daddy of three unique images of God, I’ve come to consider that disciples of Jesus experience two sorts of transformation in our lives in fulfilling the 2 biggest commandments: in loving God and loving each and all and sundry as ourselves.
The world tells us to like our tribe and put ourselves first, however the gospel beckons us to like God and treat even probably the most distant stranger as our neighbor. Because of the goodness of Jesus, and so the world knows we belong to him, we’re called to inhabit and exhibit a twice-transformed life that’s patterned after the 2 most significant mandates given to us by Christ—to like God with all our heart and love our neighbor as ourselves.
At next Sunday morning’s service, go searching at your sanctuary and evaluate whether your church constructing hosts the sort of space and community where disabled individuals can find a sturdy and wealthy belonging. But before that, we’d like to ask ourselves whether we truly consider all people, even those with disabilities, are made in God’s image and in accordance with God’s will.
Scripture tells us that God’s way “is ideal” (Ps. 18:30) and that he’s “righteous in all his ways and faithful in all he does” (Ps. 145:17). So, if we actually consider each human being around us is fearfully and splendidly made, will we love and serve them just as they’re?
Greg Harris serves as a pastor in Vancouver. He is keen about “deep discipleship” within the local church and spiritual formation for the usually spiritually forgotten.
