The Perfect Mother Is Not Disabled.

by Audrey T. Carroll

What is your greatest weakness?

I was first asked this question in the middle of a gymnasium, in front of a handful of other girls and a panel of teachers. (In retrospect, this sounds like the beginning of a literal nightmare. Just add some oversized spiders, and you’re all set.) It was the middle of high school, more or less. Afterward, I was one of only two girls who didn’t make the newly formed cheerleading team. My family explained that I didn’t make the squad because I had answered the interview question about my own weakness incorrectly; they advised me to use ‘perfectionism’ as my answer in future interviews. (I would later learn that the cheerleaders practiced all the time, that their injuries were many, so I ultimately wondered how much I had really lost out on.)

In truth, I was already an acolyte at the altar of perfectionism. When I would use this answer in interviews for years to come, it was something I wholeheartedly believed in, though I would not have framed it as a flaw. I thought it was one of my best qualities.

What’s so wrong with wanting things to be perfect?

*****

It was around this time—maybe the summer before cheerleading tryouts, maybe the summer after—when I was on vacation with family. We were on the boardwalk in New Jersey after a long day at the beach. I had already severely limited how much I would eat in a day, exerting control in one of the few ways I was able to in a life that told me my body was not my own, that my choices were not my own. It was an ill-advised act of rebellion, of reclamation, one that would reverberate within me for decades to come. It was the only control I had, the only control that was encouraged, allowing me to work toward an illusion of perfection that was unreachable. I could never be skinny enough, but I was too young to know the danger of my self-imposed restrictions. On this particular day, all had been exacerbated by the requirement of a bathing suit. We walked along the brightly lit boardwalk, the darkness of the sky relegated to the spaces between storefronts. The haze of artificial lights began to blink out of existence into spots of shadow. My vision could not defy me. I could overcome whatever physical faux pas was happening with enough willpower.

And then everything was darkness.

I could barely process the physical dissonance—my clammy skin was all too aware of the breezes around us, and the sounds did not dim at all. But still, I said nothing. I did not alert anyone that I felt unwell, or that I had entirely lost my vision.

My uncle suggested we get ice cream. I stumbled along, following where I intuited they were going, grazing my fingers along claw machines and other surfaces that will always be a mystery to me—glass, metal, wood. When I was handed ice cream and began to eat, my vision edged back, though whether because of the cold or the sugar I can never be positive.

I took this as a triumph. No one had noticed that I’d been stumbling. No one showed any concern for me or asked me if I was alright. Everyone continued as if everything were just fine. I had been able to hide my own struggles and fears, and no one had been any the wiser. It reassured me that I could maintain the façade, the performance, that no one from the outside would think to question my ability to keep my shit together. I would survive for years like this: my anorexia a secret, my traumas buried deep within, carefully guiding myself along as no one noticed the state I was in.

*****

A decade or so later, I stood in line at the DMV in Wakefield, Rhode Island. By this point, I had a cane and I was just about as pregnant as I would ever be. It was shortly before my daughter would surprise us by coming five weeks early, though I had sensed she was coming soon. My stomach was nearly too much for me to get around anymore, and being upright was in and of itself a minor miracle. I had just passed my driver’s test and was newly licensed in my mid-20s. This particular trip was to get the license finalized.

The line to get into the waiting room was already long. The building’s inner doors were closed; it was before the place had technically opened for the day. My husband forgot something or another in the car. The last thing that I remembered was seeing him push the front door of the building open to run out real quick. I could feel the sensation I was very familiar with, the warning that the world around me was about to fade away. It’s difficult to describe—nothing so obvious as a humming sound or a cold sweat. It comes as a flash of knowing, a warning of the body, maybe tuned from years of trauma-rendered hypervigilance, maybe from the hypersensitivity of fibromyalgia. But I stood silently, hoping it would pass. This vision loss would happen from time to time in my teens and twenties, and I always assumed it was one of the unhappy byproducts of starving myself when I was young. Often, if I lost vision, it was only in spots, but even if it was more darkness than that, it was temporary, and I had always remained conscious of the world around me.

When I came to, my husband was helping me along. The doors to the waiting room had opened. One other person in line had stopped to make sure I was okay; a man behind me shoved passed, even as I was moving, because apparently I was moving too slowly. I had only stayed upright by virtue of my cane. I was confused, but I kept pushing myself forward, reassuring my husband and the Samaritan that I was alright, that I would be alright, because that seemed like the thing to do.

In my first driver’s license photo, my face is rounded with pregnancy. I am pale, especially my lips. Every time I look at it, something about it is disturbing. I don’t look like me; I look like I might pass out again, sick. This image of myself frightens me.

Even though in my moment of semi-consciousness I had pushed along, insisted that I was fine, I told one of the doctors on my OBGYN team about the incident, and how it had worried me. He said that I’d been dehydrated. When I told him I’d had three glasses of water before the incident, he then claimed I was over-hydrated, going off on some tangent about people who mow lawns drinking too much water. Making myself vulnerable did not get me the help I needed, and no matter what my answer was, no matter the photographic proof, or the testimony of my husband as an eyewitness to the incident, it would never be to the standard that this doctor would accept. He had one idea of what was wrong with me, so—with all the complexity of a diagnosis you would give a houseplant—no further investigation would be deemed necessary.

*****

When I attended a local moms’ group to try it out, hoping to find some time to just socialize out in the world and maybe make some friends who could relate to where I was in my life, I left the car seat in the back of my Kia and transported my newborn daughter in her stroller. Getting her up to the second floor of the building turned out fine. Once we stopped outside the room where the group was meeting, my daughter started crying. All the other moms were sitting in a circle on the floor breastfeeding. I hadn’t realized that this was the theme of this particular moms’ group, but I sat on the floor, set up all that I needed to, and started feeding my daughter.

The group wasn’t what I’d been expecting or looking for. Everyone seemed to already know each other. I felt invisible and exhausted. It had taken so much effort to drag myself out of the house, to equip my daughter with all that she needed to survive out in the world. I tried a couple of times to stop feeding her so we could go back home. Every time I stopped, she screamed bloody murder, and the moms would give me weird looks. In her early months of life, my daughter generally cried if we tried to put her down. But there was no understanding from these other women, no sense of camaraderie, no support for my motherhood in all its imperfections. I hadn’t had nearly enough food or water that day; my capacity for care was primarily diverted to the child who couldn’t fend for herself in any way, shape, or form. Sitting there, trying to plot my escape, the symptoms of my disability were stretched to their limits; I was dizzy, sweating, my back ached and burned, and I felt as though I’d pass out at any minute. My body—still healing, still disabled—was overwhelmed.

Eventually, I had to swallow the panic that the other mothers’ judgmental looks induced in me, pack my screaming daughter up in her stroller, and leave. I found myself praying that my symptoms would hold out. I rested for a few moments in the driver’s seat, ate a granola bar that I kept in my purse in case of such situations, and then focused all of my energy on getting us home safely.

*****

How is society’s “perfect mother” mutually exclusive from “disabled mother”?

Do we even think about disabled people as mothers at all?

How does people-pleasing—the pressure to be a “perfect” disabled specimen—affect how I carry myself through the world?

How does it make my world feel more impossible, second by second, ache by pain, confusion by expectation?

*****

I was trained from a very young age to accept nothing less than perfect grades. A 98 on a spelling test would be met with “What happened to the other two points?” I had anxiety about exams, often obsessing for days afterward about which questions I might have gotten wrong. It was the kind of thing that kept me up at night. In high school, my TV would glow well into the wee hours of the morning, the background noise eventually lulling me into uneasy sleep.

I got my first driver’s permit in New York City at age 18 but barely practiced driving aside from one time in a parking lot. No test, no failure.

I got my second permit in Pennsylvania in my early 20s. I practiced and practiced. Stop signs, parallel parking, turn signals. I was ready. Anxious, but I had studied. I knew what to expect.

The old man inspected the headlights at the front of the car, a stern look on his bearded face. In retrospect, he was a bit of a stereotype—the disgruntled, malicious, middle-aged DMV worker, someone who could be friends with Jamie Lee Curtis in Everything Everywhere All At Once.

In truth, I had failed the test before I had even started. I just didn’t know it.

He got into the passenger’s seat. I followed everything I should’ve done; it didn’t save me.

Shrinking my body didn’t save me.

Hiding my body’s distress didn’t save me.

The man from the DMV took one look down. He spoke so quickly, so condescendingly, that I didn’t even know how to respond. Maybe in another context, I would have corrected him, but not pissing off the person grading your driver’s test seemed like Driver’s Test 101 to me.

“I see that you have toys here,” he said, snide, sharp, and so sure.

I looked down. Pokémon toys from Happy Meals. My then-boyfriend kept them there. It was his car. We were in our 20s.

“You must have young kids,” he declared.

Even if I wanted to talk, I couldn’t find the words. How was I supposed to fight the perfectionism? Instinct told me not to say anything, not to contradict, not to do anything to cause him to despise me any more than he already did. My mother had given birth to me by this age, but I wasn’t even pregnant.

“What are you going to do if you lose control of the car? You’re all going to end up in a ditch somewhere. You have to be responsible for those kids.”

I blinked. Mouth gaping. I was being lectured over the safety of children who didn’t even exist, children entirely invented by this man and his imagination, his guesswork about me.

“Okay,” he said without so much as a threat of gentleness. “Drive. You have three turns of the wheel to parallel park.”

I didn’t even make it out of the lot.

I didn’t bother getting a permit when I moved to Arkansas.

But I had no choice in Rhode Island.

And so I tried again. A new permit. Hours of careful and meticulous practice. I hated driving, but I was pregnant now. It was a skill that I needed, no matter how much my anxiety told me that I would just fuck it up again, that it wasn’t something that I’d ever be able to do.

I arrived at a small front office for the test rather than the crowded, fluorescent-lit waiting room in Pennsylvania. This man was younger, tattoos peeking out from his sleeves. I was mere weeks away from giving birth with a huge stomach; my status as a mother was obvious. The man made no mention of it, or of the cane I hadn’t had for the last test. He was kind, joked about how I’d lucked out because the test would be shorter with all the construction going on. One easy drive around the neighborhood and a K-turn later, and I was a licensed driver.

Not perfectly accomplished on the first try, but accomplished nonetheless.

*****

Perfectionism is an insatiable beast.

My brand of perfectionism has always taken the shape of performing anything that I could control to unhealthy levels. Often, these points of obsession included anything that was reinforced as a positive behavior in my adolescence. The time-honored tradition of encouraging girls to diet, to be dainty eaters, to not overindulge—this became anorexia in an environment where there was never a low enough calorie count for the day. And, since femininity was paramount and service was expected, this became true, too, of domesticity. It was not unhealthy to levels of disordered eating, but cleaning and baking could be done endlessly on repeat. I could vacuum again and again until the carpet felt right. I could reorganize my desk until it felt flawless. I could even learn cake decorating until I was able to craft buttercream into a rose as easily as I could sign my name. My passion grew to a point that, rather than a traditional liberal arts college, I had very nearly attended Johnson and Wales University for a bachelor’s degree in baking.

I had always accepted my need for an orderly living space and my love of cooking and baking as quirks of my personality; I might have even gone so far as to pinpoint such care as the way I show love. I’m a really typical Virgo, that’s all. It took time to frame these self-imposed tasks as coping mechanisms for overwhelming stress and anxiety, but it became obvious at some point.

When you have a toddler, and then a preschooler, it becomes a Sisyphean task trying to put every toy away at night, especially if you have chronic pain and run out of metaphorical (and sometimes) literal) spoons by bathtime. We were over a year into the pandemic, and the apartment being pristine hadn’t seemed so important. My grandmother’s health began to fail in such a way that it was her final downswing. My grandmother, who had been a nurse, and then a genetic scientist, made no secret of that fact. She was forthright with me about where she thought things were headed for her, and she was right. I discovered a stage of preemptive grief. I went into a state that I had not been in in years, one that demanded a deep cleaning of everything I could manage in the apartment. Reorganizing closets, scrubbing the oven, redecorating my daughter’s room.

We had been living in a pandemic for many months by this point. 

My husband and I were vaccinated, but our daughter was not yet old enough.

We had not seen my grandmother in ages to prevent Covid spread all around, though I spoke with her on the phone frequently.

We rushed in to see her for what would turn out to be her last birthday, a surprise visit.

Nothing felt in my control.

It was as though a button in my brain had been pressed, and a sequence beyond my power was activated, doing what I had once done to soothe myself.

And I cleaned and I cleaned and I cleaned, and it changed nothing except how our living space looked.

It affected nothing of consequence.

Even the traumatic issues of my youth had felt more satisfactorily dealt with after an invigorating weekend of cleaning and baking pies.

It wasn’t hitting the right way anymore. The grief was too much.

*****

Is perfectionism about people pleasing?

We had to avoid holidays because we weren’t vaccinated, and it wasn’t a risk we were about to take with a young child to think about.

What is the perfect choice when the years with a grandmother are limited, but a pandemic rages, threatening to infect us all, to kill, to disable?

There is no perfectionism for the disabled; sometimes, the choices are barely even choices.

There is no perfectionism for mothers, either. Not if they want to do anything but beat themselves up for falling short.

*****

Is perfectionism about control?

In a developmental psych course in college, I learned about different styles of parenting: Authoritarian was the most familiar on the one side, Permissive on the other, though Authoritative was ideal. (My life had been far from ideal. I didn’t need a textbook to articulate that.)

Authoritarian: The Dictator. The Controller. The Iron Fist. The One Who Decides Everyone’s Fate.

Permissive: Neglectful. Absent.

The two shades I work so hard, every day, to avoid, to dodge, like a bee in my hair in the summer, insistent and buzzing in my ear with reminders of danger.

Did a lack of autonomy at such a young age, at so many formative ages, bring out a naturally perfectionist trait? Is it in my genes? (Perhaps my grandmother could tell me, if I could still call her and ask.)

Is it in the stars? I am a Virgo, after all.

By blood or by stars, there is no control.

There was no control, there is no control.

Maybe the opposite of perfectionism is grace.

I cannot control my disability, my illness, my body—only work with them.

I cannot control the twists and turns of motherhood, only adapt.

These days, the “bad trait” that I use in interviews is that I struggle with being flexible when things don’t go according to plan. But I’m working on it.

BIO: Audrey T. Carroll is the author of What Blooms in the Dark (ELJ Editions, 2024), Parts of Speech: A Disabled Dictionary (Alien Buddha Press, 2023), and In My Next Queer Life, I Want to Be (kith books, 2023). Her writing has appeared in Lost Balloon, CRAFT, JMWW, Bending Genres, and others. She is a bi/queer/genderqueer and disabled/chronically ill writer. She serves as a Fiction Editor for Chaotic Merge Magazine. She can be found at http://AudreyTCarrollWrites.weebly.com and @AudreyTCarroll on Twitter/Instagram.