I Don't Want To Talk About My Body

on disability

---

In the morning, my ankles are stiff. A primordial flaw in my bones reminds me I am awake and in my body. I take a long breath, lingering in the neutral, painless horizontal before surrendering to merciless gravity.

On the edge of my bed, I move my ankles up, down, and around, tracing the alphabet. A…B…C…An exercise burned in my memory from years of visits to the University of Virginia Hospital. The doctors would watch as I walked up and down the hallway. Their polished demeanors and crisp scrubs always betrayed a sense of pride and triumph. I was walking in a straight line, trotting, nearly galloping. Mission accomplished.

For years, I’ve had recurring dreams about my surgery. In one, a beautiful beam of light descended from the ceiling. Awestruck and afraid, the doctors would nudge me forward. I would then put my feet under the beam, and poof, they would be perfect. No scars, no cast, just perfect feet. When I woke up, I would often jump out of bed to be met with reality. My stiff ankles immobile. One thunk and I was straight on the ground. I’ve learned since then not to ignore my morning ritual.

There is something grotesque about a disabled child. I could sense it in the stares that I came to recognize as a mix of pity and disgust. In their eyes, the whole arc of my life came to them in clear view. Questioning if I would’ve been better off unborn. Miscarried. Try again, this one is defective.

Many chose not to look, to avert their eyes. Squeeze them shut. My pink and blue casts stamping an impression on the inside of their eyelids.

Others talked to me slow and loud. My ears worked just fine, but to them, a disabled child must be disabled everywhere.

The ankle braces I wore for a decade were a vast improvement. Baby blue plastic castings clamped my feet straight. I could hide them under my socks and, with their help, run, jump, play at being a normal kid. Sometimes I ditched them altogether. Burying them beneath piles of laundry. Out of sight, out of mind. A practice of self-delusion that lingers even now.

For years after my surgery, I passed with perfection, indistinguishable from my able-bodied peers. A small, private triumph. My body cooperated just enough to sustain the illusion. But now, my body betrays me more and more. The stiffness creeps upward, from my feet to my knees, into my hips. I brace myself with both hands to stand, pressing against a table, a wall, whatever’s near. And I find myself cursing the younger me for her denial and delusion. For hiding her braces under laundry piles. For clinging to an imaginary normal.

It is hard not to notice others noticing. An awkward smile hides mental calculations. To ask or not to ask? Often, they’ll go with a simple Why are you limping? Which I always read as please share your medical history with me so I can feel comfortable and know whether your condition is contagious. The truth reveals itself in the lack of an assisting hand. Just an inquisitive look and a hunger for explanation.

I could say I concealed my disability out of survival instinct, and that would be true. But more often, the words simply caught in my throat. Too many unanswered questions. Too much tangled history. I feared that if I started speaking, I might never stop.

I resorted to the laconic. I just walk funny became my shield, sharp enough to sting, sharp enough to make people back off. A little barb for their prying. Why couldn't they just leave it alone? I asked myself this constantly.

Some pushed anyway. At a work conference in Upstate New York, a woman called out in front of a crowd: How are your feet so small? (They aren’t particularly small, but apparently small enough to warrant spectacle). The room collectively leaned forward, necks craning like spectators at a freak show, finally free to gawk and indulge instincts suppressed out of politeness. There was a sudden eruption of deliberation. Were they small? My colleagues' nervous laughter, meant to smother the tension, only served to heighten the humiliation.

As a matter of pride, I never laughed along with jokes at my expense. I let the tension build. I was unrelenting. I don't really want to talk about it. The assailant, unable or unwilling to back down, pressed with further questions: Was it like Japanese foot binding? (The Japanese are not known for foot binding, but here I was wondering if this was an appropriate time for a history lesson.) The energy of the crowd fizzled at my lack of engagement, and that was that. I felt a small victory for not caving, for not appeasing everyone's comfort. But when the coast was clear, I found the bathroom and an empty stall and wept my makeup off.

I’ve grown accustomed to outright cruelty and ignorance. My suit of armor polished to high sheen. But pity—pity carried a deep and penetrating sting. Senior year of high school, French class. I dared to wear moccasins instead of my usual chunky orthopedics. A calculated risk. The silky scars that snaked their way around my ankles, a raw testimony. Five minutes into the lesson, a classmate whispered from behind: Could you move seats? Your scars are freaking me out. My best friend seized the moment to play savior, the class rallying behind her in theatrical disgust. I moved seats anyway. Not willing to indulge anyone's performative outrage, not even hers.

My most charitable explanation for these incidents is simply human curiosity. When we witness something unusual happening to another body, we can't help but wonder: Could mine do that too? I'll admit I've looked up symptoms of unfamiliar illnesses when mentioned, half-expecting to find them lurking in my flesh.

But in truth, there's something darker at work. In my imperfection, people see mortality, and it terrifies them. My uneven gait and wrinkly scar tissue serve as unwelcome mirrors.

There is a silent contract known to those of us who inhabit broken bodies. We who live with disease, with twisted limbs, with the evidence of death's preliminary sketches. Whether the sentence was delivered swiftly or has stretched across decades, a diagnosis fundamentally alters your citizenship. You become a resident of two worlds, fluent in languages the able-bodied cannot hear.

We exchange knowing looks and compare notes. I’ve learned to catalogue every word, every offhand remark. Placing people neatly into categories of safe or unsafe. To reveal my truth was to offer myself as a vessel for someone else's fear. My disability transforms, becomes about them, pain repurposed as their discomfort. Romantic partners calculating my decline. They worry themselves sick over my body's future state, its inevitable betrayals. I watch them imagine me diminished, wondering if my limbs will ever give way, if they’ll ever need to wheel me around. I watch them silently measure the distance between devotion and burden. I watch them wondering if they could bear it.

When my grandmother was in hospice, I noticed, above all, those who didn't show up. Faced with a dying matriarch, they cowered. As a child, I’d heard neighborhood kids marvel at my grandmother’s strength, at how she walked confidently to the mosque from our home, sturdy and unwavering. Her hugs had been tight and fierce. Now that same vitality made her slow decline unbearable for them to witness. They sought updates over the phone. We sent pictures. We recorded her reciting Ayatul Kursi, her voice thin, but still magnetic. I resented their cowardice. Began to see in their eyes the same pity and disgust I had come to catalogue so diligently.

In the last months of my grandmother’s life, my family took turns caring for her. Everyone assigned a shift. The hospice nurses, surprised by our level of engagement, handed us manuals outlining each stage of dying — every sign painfully detailed.

One nurse shared with us that most families don’t even bother showing up. They let the nurses handle everything and wait for the inevitable phone call. Feeling a bit of relief once the whole ordeal was over. They took comfort in having someone else witness the messy business of dying. The distance created an illusion that death is something that happens elsewhere, to other families, in other rooms.

Caring for my grandmother in hospice revealed to me a fundamental dishonesty in how we organize ourselves around illness and death. It exposed the elaborate architecture we have built to maintain the fiction that the well and the unwell inhabit separate countries. We are all living and dying simultaneously. Yet, we saddle the disabled with the responsibility of holding this truth. We make mules of the ill, loading them with everyone's unspoken fears.

I understand now why we hide our deterioration. Why we conceal chronic pain, edit family medical histories, minimize symptoms even to ourselves. This concealment is not vanity. It is survival. To reveal weakness, to let people into my morning ritual, is to make myself unwittingly into a symbol. It is to transform, in the eyes of others, from person to memento mori. My limping gait, my prescriptions, my regular appointments with specialists become artifacts of mortality. People look away not from my pain but from the reflection of their own eventual decline. The relationship between the well and the unwell is fragile precisely because it is temporary. The well know this. They live in the shadow of this knowledge. They require our complicity in the collective fiction that death and decay remain theoretical, distant, happening elsewhere to other bodies unlike their own. My silence is the price of admission to that world. A price I’ve paid my whole life.

---

A bit scary to share this one with the world. Appreciate if you’ve read this far! Till next time!