The mother of a child with a rare genetic anomaly is constantly asked by strangers what's "wrong" with her son. Does she owe them an answer?
We urgently need your help. DAME reports the stories that need to be told, from perspectives that aren’t heard enough. In times of crisis it is even more critical that these voices are not overlooked, but COVID-19 has impacted our ability to keep publishing. Please support our mission by joining today to help us keep reporting.
“What happened?” asked the woman behind me at the pharmacy, her tone a blend of bewilderment and salacious empathy— like a delicious, sad oddity had materialized to enliven her Saturday, later to be forgotten. As the weather gets warmer, my son gets older and we’re exposed to more public settings, the tone becomes increasingly familiar. “What happened?” was directed toward my 6-month old, Ozzie, whose hoodie had tumbled around his shoulders revealing a tiny, peanut-like proxy for a left ear.
This bitty appendage, which I once guiltily grimaced at but now kiss with addictive, primal affection, has the furrowed appearance of a child’s blanket that’s been dragged across the floor and then dropped. A rare genetic anomaly prevented his outer ear and canal from forming and the resulting peanut, we’ve found, serves a profound purpose in both affirming and disquieting ways. It represents Ozzie’s individuality, allowing us to experience simple but intoxicating joys we’d otherwise take for granted: With his hearing aid, he can hear the patter of rain on a window or turn toward your voice. It also puts my baby on display. Inviting the public to sate curiosity and exercise their privilege, his little ear inadvertently became an instrument for confronting ableism and society’s uneasiness with difference.
That day, we’d visited our pharmacy for a prescription and to watch Ozzie bask in the staff’s coos, grabbing their faces and laughing. He’s hard to miss. Though his Goldenhar Syndrome—a rare craniofacial condition affecting one in 8,000 to 25,000 births worldwide every year and often impacting the kidneys, eyes, heart and spine — dictates some unusual features, he’s also inherently captivating. His searching, gold-blue eyes and slyly crooked grin catch people’s attention first; he’s all light and smiles. Their eyes drift next to his more unconventional facial features. The peanut ear, of course, and his dipped chin, caused by an undeveloped left jaw. It’s that moment I may be asked to engage: “What happened?” The medical vernacular—“microtia” (his peanut), “atresia” (lack of ear canal), and “hemifacial microsomia” (the facial asymmetry, and term for the difference in size of his left and right jaw)—is now mundane. I can rattle it off. But, faced with a stranger’s impulsive fascination, it requires an assessment whether I should.
Certainly managing strangers’ uneasiness with your existence isn’t solely the domain of one-eared babies; it is the exhausting, daily experience for people of color, people with disabilities, elderly people, LGBTQ people, people with criminal backgrounds, people of size, people living in poverty. Of course, it is demanded that mostly women do the answering and managing. But, after sharing the story of the astonished woman clutching her Starbucks and peering into Ozzie’s face with other parents, I saw that such unsolicited encounters with ableist, misogynistic and racist language camouflaged as curiosity outrage in a specific way: the dehumanization of children. A Black friend with a biracial son fields, “Is his dad White?” or is assumed to be his nanny. Another is simply asked of her biracial daughter, “What is she?” A friend whose toddler lives with Type-1 diabetes guards her daughter’s medical implant from strangers’ questions, even their touches. A fellow microtia mother in India told me that superstitions trigger public interrogation about her pregnancy diet: e.g., what fruit caused her son’s condition? Fathers of an adopted baby girl endure strangers pathologizing her birth mother; compounding the injury of being asked why your child was “given up” is that child (adopted not because of a deficit of love, but an abundance) getting the same question. Uniting the reflexive vocabulary of racism, ableism, and misogyny is the questioner’s privilege: the expectation of personal comfort at the expense of another’s humanity.
Thus, every time, I evaluate: Does this stranger really want his story? Do they deserve it?
It’s a hard story to tell. Clinically, the pregnancy was flawless but after four miscarriages, it was psychologically punishing. Multiple ultrasounds and reassuring genetic testing didn’t alleviate the certainty he wouldn’t survive. And the more attached I became, the more painful the inevitable loss. Over months, I haltingly adjusted to the prospect of Ozzie joining us and we announced the pregnancy four weeks before his due date, unpacked the bassinet only on his due date. After 28 hours of labor and eight minutes of pushing, a surge of resolute peace filled me. Here. My perfect, healthy boy.
Only four hours after giving birth, somber NICU doctors delivered me from that peace with Ozzie’s diagnosis (and uncertain prognosis) as I wept and bled. Our genetic counselor later explained this was a de novo mutation: with no history on either side of our families, it was completely original and part of the 4 percent of all pregnancies resulting in a genetic anomaly. Forged weeks after conception and impossible to test for or detect on ultrasound, it was Ozzie’s little secret in the womb. I grieved at first, but now marvel at his wisdom. He hid his microsomia from his mother, knowing I wouldn’t be strong enough to cope. We contemplate his ultrasound images (which my husband, Jared, still carries in his wallet, a private ritual between them) and in each, Ozzie’s fist is clenched over his left ear. He’s tranquil.
Jared confidently acclimated to our new reality. As a child encouraged to keep his epilepsy a secret for fear of exclusion and judgment, he was determined that Ozzie never feel that lonely otherness. Still in a grieving, guilt-ridden postpartum fog, I was slower to enlightenment. It was evident in Ozzie’s first “What happened?” at five weeks old, at the park. I told her everything, without hesitation. Anyone who asked received a turbulent gush of information, out of atonement and shame for what I’d done to our baby. I couldn’t be criticized, and he couldn’t be hurt, if I took control of our narrative first.
Now, at the pharmacy months later, another “What happened?” Out of my ambivalent fog, I was different. Strong and in love, I was Ozzie’s mother. I considered my options.
I could be passive aggressive: “I’m not sure what you mean; point to it?”
Or direct: “It’s private medical information.”
Beatific: “Hi. I had a beautiful baby. This is Ozzie.”
Petty: mirror her eager tone and nod “What happened?” at her Xanax; wasn’t her health fair game, too?
Be generous like Ozzie, with a big, accepting grin: explain craniofacial conditions, model decency for the theoretical children in her life who might ask us the same question one day.
Ask what happened to her: why she had cornsilk blonde hair and long legs, entitled to her body because it’s unlike what I’m used to. Wonder openly if her bluntness was a symptom of her unconscious privilege, and if it affected how she engaged all people who were different from her.
Ask why she needed to know, why her discomfort with difference required satiety above a child’s privacy and dignity even before asking his name.
I contemplated, not just her motivation but the potential outcome. Somehow, sharing what “happened” to Ozzie has yet to result in a more just world, donation to a pediatric craniofacial organization, or the exchange of phone numbers for a deeper understanding of another person. Similarly, compliments like, “I could never handle that” and, “You’re amazing to deal with this,” (implying my child requires an extraordinary parent to be worthy of love) only make one of us feel good. “It’s great you show off his left side!” paradoxically informs me that although he’s on display, he also should hide.
There’s plain unkindness: “What’s wrong with him?” Or the assumption that we—and more importantly, Ozzie—don’t love him as is. “They can fix it, don’t worry.” We can construct an ear but there’s nothing to fix about Ozzie, or any child who experiences the world with a difference. He’s a fabulous baby who worked hard to get here and who we surround with a community that embodies and embraces difference. Everything I do is in service of his humanity, his equity, his dignity and his respect of others’ rights to the same.
But I have to remember that, while each “What happened?” saps energy, so does my anger. Thus, I’m refining my script. I try for Christlike but land on confrontational, as this is new territory for someone who’s navigated the world as a typically-abled, White ciswoman and partaken of the privileges it entails. And I notice: It’s always White women who ask.
I travel differently now, because I’m Ozzie’s mother. It’s my duty to advocate for and strengthen this boy. If I do well enough, Ozzie will eventually lead me. He’ll self-identify within the vast, beautiful disability community, be vocal about the educational tools that work for him, and dictate every future “What happened?” Maybe he’ll be more tender and patient than his mother and educate people. Maybe he’ll want privacy. Maybe it’ll depend on his mood. I’ll follow his lead. I’ll learn from his educators, peers, and his community, but mostly I’ll learn from him. It’s an honor.
But despite my growth, I still haven’t prepared the right answer for invasive, privileged questions. I don’t know what response will make us both better people, and what will empower Ozzie in a world uncomfortable with asymmetry. At the pharmacy, the best I could do was smile gently and say, “Sorry, I still haven’t prepared the right answer for invasive, privileged questions. But I’ll get back to you.”
We urgently need your help!
Covid-19 has dramatically impacted our ability to keep publishing. DAME is 100% reader funded and without additional support, we can’t keep publishing. Become a member at DAME today to help us continue reporting and shining a light on the stories that need to be told, from perspectives that aren’t heard enough. Every dollar we receive from readers goes directly into funding our journalism. Please become a member today!
(If you liked this article and just want to make a one-time donation, you can do that here)
CONFUSED ABOUT VOTING?
We've got you covered!
Check out our state-by-state map for registration deadlines, early voting dates, and everything else you need to make your voice is heard on November 3rd 2020.