My Son Has A Craniofacial Difference, And He Deserves Bodily Autonomy

Four hours—that’s how long I’d been a mother when two grim-faced NICU doctors came to the hospital bed to diagnose my newborn, Ozzie. They explained his left ear had not developed in utero; there was only a curled, peanut-like appendage beneath a patch of smooth skin where an ear should be. These features, and his asymmetrical jaw, were symptoms of a rare craniofacial condition called Goldenhar Syndrome: one in 12,000 rare, a salad of syllables, ghoulish statistics, unknown cause and unknown prognosis.

My postpartum daze and the still dark room prevented me from processing the litany of unnatural phrases like “Grade III microtia” and “hemifacial microsomia.” They kept going. His jaw might indicate tube feeding, one said, and there may be spinal, nephrological or cardiac complications. Atresia— the lack of a left ear canal— indicated hearing impairment, and he would likely experience emotional problems because of his obvious facial differences.

Don’t Google Goldenhar, one warned; you don’t want to know.

Of course I immediately Googled—Googled and sobbed, while my partner Jared stammered questions disbelievingly and Ozzie, just four hours old, slept beside us in his plastic-walled bassinet. My sturdy nose, in miniature, flared occasionally as he breathed. Fixating on his fragile cheeks and tiny lips, a face I’d found flawless until that moment, grief and guilt began to suffocate me. But somewhere deep, I’d already prepared myself for some kind of caveat.

Partly because of four previous pregnancy losses, causing me to believe my own body was toxic, inhospitable for a child. Mostly because I’d suspected I was part of an unfortunate biological legacy for years, having watched my own mother, Elissa, disintegrate from Multiple Sclerosis. The bodies of Ozzie’s mother and grandmother, two generations designated to assure his health and wellbeing, malfunctioned. Thus, I’d typed an invisible asterisk by Ozzie’s birth before he existed. And with this almost outlandish diagnosis, my failure was confirmed and my baby would have to suffer for it.

But, in watching Ozzie flourish, he demolished those ghastly bedside predictions. That early, flawed caveat transformed into gratitude and purpose. I was forced to interrogate my own ableism, internalized beliefs interpreting “different” as “less.” I started questioning the harmful external systems around disability that shaped and damaged my relationship to my mother and myself. I immersed myself in disability justice, combatting the multifaceted systems of oppression which prevent disabled people from participating fully and joyfully in our world.

Through this work, I’ve reconciled the trauma of Ozzie’s birth with the shadow of Elissa’s (my mom) life, her protracted illness, and her death. I began grieving her while transforming into a tenacious advocate for Ozzie. My way of honoring his future and her past.

It’s not my place to speak for Ozzie on disability, how or whether he’ll identify on its incredible spectrum. But as an nondisabled, cis white woman, I’ve recognized my unique privilege and the urgency that all we reframe disability as an intersectional social justice issue in which the deficit is not with the individual body, but the oppressive contexts in which they exist. I owe this to him, and to her.

My concept of disability and chronic illness didn’t emerge till her 1989 diagnosis, when I was eight. Before that, I have memories of a devoted mother and vibrant, Jewish extrovert from Queens; her black bouffant and red-lipped grin enliven every photo I have. I worshipped her, inhaled her contagious energy. But her diagnosis changed us. Sent home with pamphlets foretelling lesions and certain invalidism, the 20-year decline of her spirit, mind and body began. I remember that night, hesitantly opening my parent’s bedroom door. My parents sat on the bed, my mother’s hand on my father’s shoulder. His back was to me, shoulders buckled.

As a teenager, I watched her independence morph into denial, and an unwillingness to share herself with me. Maternal sacrifice, a quintessential trait of her own mother, felt like brittleness. She wouldn’t ask for help when she fell or talk about her grief. With no egress for my confusion and ache for a relationship, I lashed out. I never registered her disappointment, the neurologists’ infectious fatalism, the everyday ableism. I saw only her disease.

Only her shame at systemic loss of faculties. Only frustration when a car without a handicapped tag took the single spot; she’d limp across the parking lot while strangers unreservedly watched. Anger when optic neuritis stole her ability to drive. Frustration with two kids. Her vision of motherhood— an eternally pumping fountain of provision, any leak rendering you useless— shattered. I didn’t yet understand these moments as expressions of pain in response to a world refusing to make space for it.

During the rare high school events she attended, her wheelchair’s width relegated my parents behind poles at the auditorium’s rear. Faculty apologized, only to my father, simultaneously singling her out and discounting her. School conferences were held on upper floors. Instead of questioning the building’s lack of elevators or teachers who wouldn’t walk down, I resented she couldn’t walk up. I recall restaurant servers, perceiving her wheelchair as an emblem of incompetence, asking my father for her order. He’d politely tell them to ask her while I stared, red-faced, into my menu. I left for college at 17, calling often but visiting infrequently. It hurt to see her so I averted my eyes.

The disease eventually overtook her and when she died, there was little left of the woman in the pictures. I dropped on a sidewalk when my father’s voice broke on the phone: “She’s gone.”

I tried to move on from the memories and shame I now felt fully, constantly. I thought the shame would die with her, but it became a permanent, guilty coat.

It was through infertility and multiple pregnancy losses that the shame became more personal. The losses reinforced misogynistic narratives around reproduction, bringing the blame and stigma heaped on people whose bodies don’t perform as expected of them, right to my door. I thought of my mother, the inadequacy that radiated so darkly from her; it was the first time I truly related to her. My comeuppance.

The first pregnancy was two years after her death. With my motherhood manual just a montage of delightful childhood memories, two decades of hurt, and self-loathing on a cellular level, I was terrified to admit I wanted a child. I sat in Prospect Park talking to the person inside me—powerful and forgiving—and confessed. I’d be honest. I wouldn’t disguise fear with projections of strength. I’d be soft. I’d try.

I returned home from the park and miscarried hours later.

The physical agony was amplified by humiliation the following morning. I left the OBGYN, emptied, passing smiling pregnant people waiting in the lobby for their turn. My body had betrayed me. I ran every day, avoided carbs, spent hours at the gym, all to assert control, to never become unwell. But I couldn’t control this. It spurred new fears; not just to fail again, but to desire anything at all.

Trauma of a second pregnancy a year later was exacerbated by misogynistic, clinical mishandling. At five weeks, I started bleeding. Resigned, I visited a male OB to confirm the loss. “Nothing there!” he warbled during the ultrasound, but the bleeding persisted another month. Though his office cheerfully dismissed my concerns— “Miscarriages can take a long time!”— I visited a local clinic. After hearing my symptoms, the alarmed internist (a woman this time) sent me to the ER. There was “something there;” an ectopic pregnancy, attached to my left fallopian tube and about to rupture.

“How many pregnancies?” The technician’s question punctured the dark room, as I squelched on bloody exam paper.

“Two,” I replied.

“And no children? Awww.”

Even a dismembered voice was disappointed in my body, this time failing to provide obvious directions to my uterus. I returned home, empty again except for a shot of methotrexate to end the pregnancy and absorb the tissue into my body. Invisible.

Three more years, two more losses. I sensed a bitter parallel between me and my mother. Although this was no explainable disease or impairment, infertility still registered as an alien, isolating deficiency. My body failing me like my mother’s failed hers. I gave up. Then I accidentally, immediately became pregnant again.

The fifth pregnancy’s vitality was as mystifying as the losses preceding it. I was ambivalent, detached, staring at ceilings instead of screens displaying a healthy, animated pearl. Few people knew; I couldn’t explain another loss.

But I never lost him. We cautiously shared the news a month before his due date. Labor was long but powerful. When I heard him cry, my ears confirmed what I never believed: I was capable. I could nurture and deliver life.

Four hours after my hopes were realized, the NICU doctors extinguished them.

I re-entered the medical world, this time a caregiver instead of a bystander. Ozzie’s first month was awful. During a two-week cardiogram to examine his heart, I used YouTube tutorials to learn to manually pump in the bathroom, squirting milk everywhere while I cried. At his initial hearing test, we were told the audiologist was at jury duty.

“Come back next month?” they asked, while I trembled waiting even another minute.

Geneticist visits prompted philosophical questions instead of answers, and I blurted yes to any well-intentioned surgeon’s proposal to “fix” Ozzie. Yes to straightforwardly essential procedures, yes to the questionable ones, yes to the cosmetic ones. Clinics with upwards of 14 specialists put in MRI referrals for this tiny, innocent human who deserved better than me, someone who couldn’t be trusted to make pivotal decisions.

How could I? His mother had failed him. I burned with horror at what I’d somehow done. The shame was exacerbated by both real and imagined stares and judgment. Banal but blatant ableism, which I’d only witnessed happen to my mother, was now directed at me. I joined two neighborhood postpartum groups, bristling each time someone furrowed their brow. “Oh, I’m so sorry,” “What happened?” or “I can’t imagine how you do it.” Inquiries usually came from white, nondisabled cis-women who felt entitled to answers about a baby’s body. This white-knuckled scrutiny persisted in Ozzie’s first two months, when I still assumed him to be an extension of myself.

But during a 5am breastfeeding attempt, I began receiving Ozzie’s message: I’ll tell you who I am. I’d only pumped until that moment, accepting the NICU doctors’ certainty he wouldn’t breastfeed. This time, he latched.

In this magical intimacy, I finally saw him—not as part of me, or someone I needed to fix. I felt reverence in his golden hair, expressive eyebrows, the delicate peanut ear, his curving jaw. He lay on me, an individual here on his own terms, asking me only for love. I surrendered to this wise child. My guilty coat seemed to loosen, enough to let me breathe.

He grew into a charming, curious, and easygoing baby. I grew up too. We moved to a new neighborhood to be closer to his school, where children with hearing impairments thrive alongside peers of varying differences and backgrounds. He became the kid greeted by name everywhere he went, beloved for his generous spirit and crooked smile. Instead of bristling, I began educating strangers about craniofacial differences, urging political exploration beyond sidewalk questions. As the child of one disabled person learning to parent another, I developed tools to critique able-bodied supremacy and the sinister framework in which it thrives. Only then could I view my mother’s experience with pure compassion. I realized her dignity had been ground out not by Multiple Sclerosis, but the lack of equity afforded to her because of it.

The apex of my growth—when I truly began confronting ableist systems working both within and outside myself, and finally hung up the coat—came at a clinic with Ozzie’s craniofacial specialists, when he turned two. A reconstructive surgeon laid out options for his microtia (the little peanut ear I’d grown to adore). First prosthetics, creating a spectacular, synthetic external ear. Or, using tissue from his rib cartilage, create a real ear. Or we could do nothing.

In the early, guilt-stricken appointments, I’d reflexively favored any intervention yielding the most “normal” outcome, while Jared had always advocated for Ozzie’s agency. Now we were in sync that Ozzie would choose an intervention, if and when he was ready. Till then, we told the team, we’d leave his ear as is. Still, I was curious. “What do most families choose?”

The surgeon replied that around seven years old, most parents selected the rib graft: clinical rationale being the rib tissue’s maturity, but from a social developmental perspective, seven is when bullying starts. “People’s eyes naturally go to the ears’ lack of symmetry or any atypical feature,” he said, explaining that parents naturally want to protect their children from ostracism and unhappiness. This was not a reason. His words only cemented my resolve.

I Imagined Ozzie as a first grader, begging for an ear because someone made fun of him that day. Procuring one would mean a host of surgeries and psychological aftershocks, but we’d do it for him. The next day, though—he might be mocked for his hearing impairment, his name, whatever’s de rigueur for bullies in five years. Those things we can’t fix. We can only model self-love and resilience in a world that reflexively denigrates difference, anything that challenges our fabricated definition of “normal.”

We can model empathy and justice. Because— two ears or one—Ozzie will objectively be fine. He’s growing up a middle class, healthy, white male in a city of boundless resources in a nation which values his well-being over everyone else’s. Instead of modifying our child, I choose to modify the society that silences and denies dignity to people because of their apparent or non-apparent difference, their lack of access to resources, or simply their existence. And while initially focusing on inequities facing the craniofacial community, I finally saw ableism as a single thread in a multifaceted system. I also realized how deeply that impacted my mother and I: the relationships to our bodies, and to each other.

I began responding to ableism by developing, as the late disability activist Stacey Park Milbern urged us in Ableism is The Bane of My Motherfuckin’ Existence, “political understanding of ableism as a system of oppression that favors able-bodiedness at any cost.” Milbern describes a conspiracy by “ableism and racism and classism and heterosexism and all forms of oppression [which] really work together to keep people out.” This lens allows us to recognize the pervasive, harmful and illegal barriers to disabled peoples’ dignity, civil rights, and lives. We can see ableism as a lethal avenue for white supremacy, dictating who is worthy of essential services. Who survives.

Everyday ableism is often expressed through subtle language, gestures and behaviors, like the servers asking my father what my mother wanted, the pervasive internet “vaccines cause autism” fallacy implying people prefer a dead child to one with autism, or a speaker or panelist at a conference rebuffing an amplification device. “Oh, I don’t need a mic!” they smile, disregarding hearing-impaired audience members who may disagree.

People with visible differences (scars, limps, mobility aids) are often asked to explain them to nondisabled strangers, extending to unwanted physical touch. This seemingly benign gesture, which writer and educator Mia Mingus defines as forced intimacy, is the “common, daily experience of disabled people being expected to share personal parts of ourselves to survive in an ableist world.”

I’ve felt it in the condescending gasps of “I’m so sorry!” or “I could never do it,” directed at my mother and later, Ozzie. Now, I identify these gestures as notes in the larger symphony of able-bodied supremacy and respond accordingly.

Less subtly, ableism disenfranchises people socially and economically through direct means (such as inaccessible transit systems) and indirect. Job listings requiring an “ability to lift 25 pounds,” even non-physical academic roles, are common; such normative language might not register with nondisabled candidates, but is a discriminatory hurdle to qualified, disabled ones. Neuroatypical candidates, often with invisible differences, can be saddled with employers’ prejudices about their capacity to collaborate or complete projects. Even as they resist requesting necessary accommodations for fear of reprisal, they’re still likely to be passed up for advancement.

Ableism harms children, not just due to infrastructure —though only a fifth of NYC public schools are fully accessible, barring disabled students from “the majority of schools because of architectural barriers”— but access to vital services. The coronavirus pandemic has left ambivalent parents and special needs educators with few good options: persist with distance learning, which can be challenging for neuroatypical, sensory-challenged or disabled children requiring in-person therapies, or return to in-person instruction and risk exposure to all (especially frightening for medically complex children).

Economic disparities are exacerbated for families who lack access to technology or reliable internet, or can’t provide hands-on therapy at home— their child can lose even more progress. Ozzie’s currently accessing speech therapy remotely; it’s tough, but more easily adaptable than services like occupational therapy or obtaining hearing devices. As his therapist told me, “You can’t provide hearing aids for a baby remotely.” These challenges mostly go unacknowledged by nondisabled people.

Ableism is deadly. Mentally ill and neuroatypical individuals are particularly vulnerable to incarceration and police violence and, as ableism is a tool for white supremacy, black people are more at risk than white. Disabled Black women, already marginalized by the medical community, are more likely to receive substandard care in a racist system which often doubts Black women’s pain. Kym Oliver, a host of The Triple Cripples podcast who lives with Multiple Sclerosis, notes how disability compounds already inequitable care: if a doctor is automatically skeptical of a woman’s experience, “Imagine how difficult it is …to get access to the treatments or resources you require to manage your disability.”

Right now, demand for the nation’s grand reopening jeopardizes chronically ill and disabled people. “if you’re sick, just stay inside,” is the typical ableist retort, as if a medically complex person’s existence disrupts the Constitutional right to pedicures. Teetering on eugenics, hospitals calculate the value of elderly and non-normative bodies, especially people of color, as collateral damage, with ventilators for COVID-19 patients rationed based on the patient’s societal value: in June, a Black quadripelegic father with COVID was tortured and essentially euthanized in a Texas hospital. And people with intellectual disabilities are simply more likely to die from the disease.

In Ableism, Milbern considers the value of disabled people to the institutions designed to serve them. Is it “about quality of life or is it about social control and perpetuating this idea of a good body?”

Her question highlights the urgency of recognizing disability not as a problem with the individual, but their environment: it requires pivoting from the medical model of disability, which abets our discomfort with disabled bodies and prevents them from accessing resources and equitable care enjoyed by nondisabled individuals to the social model, which demands accountability not from the disabled body, but from the institutions surrounding it.

The medical model, defined by Tobin Siebers, views disability as “a property of the individual body that requires medical intervention. The medical model has a biological orientation, focusing almost exclusively on disability as embodiment.” The individual’s defining feature is their deficit, and —due to our ableist, normative context— requires interventions to fix it. Milbern’s Korean mother faced white doctors’ pressure to sign off on questionable childhood surgeries, their clinical rationale likely fed by a racist framework. I faced it (to a less extreme extent) with Ozzie.

I consider the pamphlets my mother received in 1989, detailing only clinical interventions for mitigating the disease; no suggestions to fortify the self, family, community. She routinely received unsolicited recommendations to “cure” herself: bee venom, meditation, more infusions, less infusions. No idea entirely meritless, but the invasive privilege of being pathologized by a second cousin or a stranger at the supermarket led to her inevitable bristle, then their superficial hurt.

“Just trying to help,” they’d frown, their distress now also my mother’s problem.

Help is unnecessary; active resistance to a system requiring disabled people “fix” themselves or leave, is. Begin by critiquing disability through the social model, which rejects the medical model, per Siebers, by understanding disability “relative to the social and built environment, arguing that disabling environments produce disability in bodies and require interventions at the level of social justice.”

Queer, disabled writer Imogen Fox, is more succinct: the social model “teaches us that we are disabled largely by the world around us when our access needs are not met” and creates “a community of people who are all disadvantaged and oppressed by lack of all kinds of access.” Thus, Fox says, “I am a disabled person and NEVER a person with disabilities.”

Our legal, social, racial, and economic structures disable people; only when we reframe our individual attitudes and behaviors, and demand accountability from these systems, can we repair the multifaceted harm they cause.

For me, I’m still unraveling knotted, ableist constructs of beauty, normalcy, and what’s considered a worthy body. I owe Ozzie this unlearning. I owe my mother, whose inflamed nervous system wasn’t the only thing delivering tangled, agonizing messages; she was indoctrinated by society to doubt her worth. I owe it to myself to repair the damaged view of my ability to nurture life. My infertility story isn’t about inadequacy. It’s about confronting systems convincing me I was inadequate, a conviction amplified when my child was born visibly different.

Acceptance, equity, and the imperatives of disability justice are embedded in our family. It’s woven into stories we tell Ozzie about his grandmother, a beautiful, complex woman. Her legacy isn’t of pain and regret, but Ozzie’s care for others and the sense of justice guiding him.

He’s already started, joining me in DC to lobby Congress for S.560 / H.R. 1379, bills supporting individuals with craniofacial conditions (his main duties included rearranging Chuck Schumer’s couch cushions). Our last night in DC, my birthday, we ate dinner on Avenue H. At the next table sat an octogenarian celebrating with friends. Jared noticed he also had microtia/atresia, and wore a bone-anchored hearing aid like Ozzie’s. We were astonished—outside of Ozzie’s school, we’d only ever met two people with his condition in person. I tentatively made eye contact, and he cheerfully gestured us over once he saw Ozzie. I choked up telling him what brought us to DC (birthday, serendipity, Capitol meetings and two martinis do that to me). He patted my hand and congratulated Ozzie for being part of the fight. He also had some advice:

“Tell him to be resilient. It’s hard. But he’s going to be great. I can tell.”

Ozzie is one in 12,000, but that night, an ally right at the next table: An unexpected connective thread, part of a massive fellowship I was finally so proud to join.

I watch Ozzie, this one-eared delight, doing everything doctors told me he wouldn’t. I believe my mother would have adored him. And sometimes I see her. I see her magnetism in his ability to read you, raising a single eyebrow to negotiate more animal crackers. Her giving heart when he offers a toy truck to the kid crying on the playground. The determined girl from Queens when he marches down the street instead of walking. I watch him go, so able, his hair glowing gold from the sun and his grandmother’s grace.