I didn’t want to write this essay. I could’ve gone my whole life with no one outside my immediate circle knowing I’ve got cerebral palsy and been fine. Not fine—I’m never fine-–but unbothered. Maybe I’ve been asked once or twice if I was limping by people who didn’t know me. In college some guy came up to me on campus and said, “oh shit you’ve got drop foot too?” and I just smiled and nodded. I’ve got no idea what a drop foot is.
The thing about identifying yourself as someone with a disability is that it comes with a whole fuckton of assumptions. People will always check in to see if you’re ok, if you’ve overexerted your allotted energy for the day. (As if there’s an allotment handed out like pills at the ward; I’m just lazy.) They won’t look you in the eye, or might feel obligated to plan around you. No bike rides, no hikes, no swimming pools over five feet deep, no trips to the beach because sand is so unstable and slippery it hurts to walk on. Instead of footprints in the sand I’ve got footprint. Singular. One foot and one crescent-–just the suggestion of sole and heel and baby toe, smashed into the shoreline so hard it takes multiple waves to wash away. And then there’s the questions that pop up, unspoken: Am I a burden? Are they hanging out without me? Do they think I’ll complain too much? Am I going to see carefully arranged candids on Instagram later of everybody smiling in the woods? Maybe they think you’re fragile or, more likely, irritating, and really, who could blame them? I’m not ignorant to the fact that navigating all of this is irritating. What do you say? Where do you look? Don’t stare. Don’t look away too quick. Don’t stare. What word’s gonna release an army of pseudo-intellectuals calling you ableist? Idiot? Gimp? Cripple? What’s the next movement I can attach myself to? What’s new? What’s now? It’s all too much.
When all those disability activists came after Lizzo for using the word “spaz” in her song Grrrls, then two months later, Beyonce for using it in Heated, I wanted to crawl out of my skin.
“Hey @lizzo,” one tweet read. “My disability Cerebral Palsy is literally classified as Spastic Diplegia (where spasticity refers to unending painful tightness in my legs) your new song makes me pretty angry + sad. ‘Spaz’ doesn’t mean freaked out or crazy. It’s an ableist slur. It’s 2022. Do better.”
I didn’t care that other people had spastic diplegia. Shit, so do I, and I never made demands of public figures. The whole thing felt orchestrated, performative.
“How fucking stupid. Spaz?” I was Facetiming my friends in the group chat, enraged at how fast both Lizzo and Beyonce had bowed to the whims of people who only existed online. “They think they can like, control everybody. And like, clearly they can. But—”
“I dunno,” somebody said. “Don’t you think it’s kinda good people are more aware of what’s cool to say?”
“Oh come on. You think anyone cares? Really? Bruh. It’s like, a money thing. They get a headline for apologizing to the crippled? Boom. Song’s a number one.”
I didn’t want to write this essay; I wrote it regardless. Maybe it’s a money thing for me, too. I know somebody will read it. I know it’ll get passed around like a whore at the prom. An audience loves an underdog story: the unlikely hero overcoming some tragic life event to reach the top of their field, the girl who takes off her glasses and gets the guy. There’s always some dorky little kid with no friends, then he gets friends, then everybody cheers, then the credits roll. So uplifting. So nice. We all love that shit. Hell, I’m into tacky feel good Oscar bait as much as anybody else. We go to these stories to point at them and say “thank God that’s not me” or “Wouldn’t that be so hard?” Nothing works better to make you feel good than the story of a life you’d never want to live.
I didn’t want to write this essay. But I am writing to tell you what you want to hear.
***
I was three when the pediatrician told my parents I had cerebral palsy. I spent the first few years of life rolling around the house like a loose penny, or crawling with my one bum leg dragging behind me. There was never walking. Or, if there was walking, it was in short, clumsy bursts. My parents bought me a child-sized grocery cart in an attempt to remedy the instability, but from the home videos, it’s obvious it didn’t work. I was cute then. Precocious. I had a shit ton of curly hair and gapped teeth (my mother called them lucky teeth–where’s the luck?) and talked a lot, and in the videos I’m talking about the birds or the butterflies or the trees or the neighbor’s swimming pool before falling face first into the sidewalk. My chin looked like ground beef for a long time.
Cerebral palsy is a lot of things. At a base level it’s brain damage. A hole in the brainscan like a stain on a shirt. For some it’s a prison: no talking, no walking, assisted care for life, a full body sling to get you out of bed and onto the can. Most of the time it’s less bad—fucked up arms, a wheelchair, a walker, muscles taut as a tight rubber band. For me it’s less less bad than all that. (But still bad. I know you want it bad.) I wore a leg brace for fifteen years to keep my left ankle from flopping around, an eye patch to make my left eye not lazy. There was a decade of in-home physical therapy, routine Botox injections to loosen the muscles, the unfulfilled promise of stem cell trials, surgeries that pulled me from school for months at a time.
The good thing about not being able to walk, according to the elderly women in my life, is that it kept me from doing regular kid stuff, like having fun.
“Just like a little adult,” my grandmother says. “We could take you out to dinner, and you’d sit there all quiet and good.”
My grandmother is the expert on how to fake like a situation is better than it is. It’s not optimism, necessarily, but carefully orchestrated deception. She shops at the Talbot’s Outlet store with a stack of coupons, buys flower-patterned jackets and those embroidered T-shirts depicting Cape Cod seascapes to make other old ladies think she’s got money. She’s nice at church, always so nice that people make a point to tell her. “Oh Bev!” they gush. “You’re a saint!” or “You work so hard!” or “I don’t know how you do it!” At home, though, there’s always something not right, something to comment on. She tells us how Edie Galousha looked like shit this past week (“I think she’s close to death. A shame, really.”), or how disgusted she is that Pastor Marcus ran the service in jeans.
“Jeans! Can you imagine? Those young California types are so unprofessional!”
My grandmother’s best friend was Esther, who married young to an old man who died and left her a fortune. Esther was my mother’s godmother, and she liked the finer things. She took every meal outside the home at the sort of places that offered still, sparkling, or tap, and always ordered sparkling. She liked to say she looked like Liz Taylor, and I’m sure she did, at one point, but by the time I came around she was in her late sixties, overweight and wrinkly, and her face had drifted so far down her neck it looked like she’d melted.
Because I couldn’t walk, limiting my ability to get into things, and didn’t cry much, Esther made it her mission to take me out on the town. She’d tote me and my mother and grandmother around to the most expensive places in the tri-state area and tell us to order whatever we wanted, then point out to everyone in earshot how sophisticated I was for ordering shrimp cocktail.
“Isn’t she so bright? Three years old! Shrimp!”
Once, we were at Carmen Anthony’s Fish House, where my mom was waitressing, and I noticed that, rather than a salad fork and an entree fork, there were two big forks.
“Don’t worry about it, honey. The owner’s just too cheap for salad forks,” Esther said.
The owner was sitting in the booth behind us. He came over and commented on my observational skills. Never before had a three year old roasted the integrity of his flatware.
“Isn’t she so bright?” Esther said. “Our little doll.”
For Esther, that was it. I was less a person than an accessory to be carted around and dressed up and shown off. Often, she’d take me to Lord & Taylor at the mall and buy me expensive frilly little girl dresses and sweaters with entire scenes of The Nutcracker embroidered along the hem. I could only wear custom orthotic sneakers bulky and wide enough to fit a brace, so I looked stupid, but the performance of putting on a sweater decorated with dozens of mice pleased her. And pleasing her pleased my grandmother. And my mom was only happy when my grandmother was happy. So I was happy. Happy to do it.
“Oh, how perfect!” Esther would say. “Look at our model.”
When the elderly women in my family talk about my early years, they always beam as if my blind compliance was a good thing. As if a dog shoved in a purse is the perfect dog. It’s a type of perfection I’ve been chasing since birth.
***
Before I could enter kindergarten the school district made me attend a summer day camp at Monkey Business Children’s Gym, a required onboarding for all kids with an assistance plan. Monkey Business was in a strip mall, the kind of place you might host a birthday party in, and it was all indoor—no windows—so it reeked like piss and Pine-Sol. They had monkey bars and carousels and bean bags, and every surface of the place was padded with oversized puzzle pieces in order to prevent injury to minors. Of course there were always injuries, in spite of the precautions: twisted ankles, concussions, bites. When little kids with every possible syndrome are let loose in a given space, there will always be injuries.
I hated going to Monkey Business. I spent the first hour there sobbing every time my mom dropped me off. I hated danger and roughhousing and the overfamiliarity of the other campers who thought I was interested in group hugs or banal conversations about Pokemon. I hated the counselors who made me participate in “feelings time” (even at five I was a cold bitch). Who needed to know what I was feeling? Read the room. I was pissed to be there, so I refused nearly all group activities.
Even though I was walking by this point, I spent most of my time with the wheelchair kids. They got to hang out in the lunchroom all day and listen to books on cassette. Most didn’t talk yet, and I latched onto the silence. I could disappear in the lunchroom, sit under the table away from the children smearing shit on the slides, away from the little boys who pushed girls off of swings. I rejected the sing-a-longs and arts n’ crafts and ball games, only emerging for story time, when we read Brown Bear, Brown Bear together and I could demonstrate my superior intellect by shouting “cardinal” over everyone each time the red bird page came up. The lady in charge always yelled at me for that one.
“Kathryn, it’s a red bird. See? Red. Bird.” The counselor would drag her finger along the words, crushing my impulsive need to show off.
Didn’t matter that I was showing off, though. I was ticked. I knew it was a cardinal and there was no good reason for my being in that room with children who couldn’t speak, or needed assistance eating. Every time my mom dropped me off she reminded me of this: You are not like them.
At the end of the summer I was sent home with a note from the counselors that said I had a hard time interacting with other children.
***
I didn’t want to write this essay, but I know somebody will publish it and feel good about themselves for platforming a disabled voice. My life has been nothing but hardship hasn’t it? Cerebral palsy’s made things really tough. Thank you for acknowledging my struggle.
Here’s a wild story for your efforts: in first grade we had reading buddies time, an hour of the day when the third graders came down to the first grade wing and read us picture books. Everyone was given a reading partner, and surveyed to figure out who might be a good fit. The boys who made liking the Red Sox their entire personality were paired off with other Red Sox fans. The girls voted most likely to tattle were placed with other snot-nosed overachievers. I, clunking around in a hard plastic leg brace, got paired with Nicole. Or maybe, to be more precise, Nicole’s forty-year-old aide.
Nicole also had cerebral palsy, but she didn’t look like me. She couldn’t speak, communicating only through loud grunts and a series of buttons on her motorized wheelchair. Her mouth dripped a steady stream of mucus, so the front of her shirt was wet. Whereas my body moved awkwardly, hers didn’t move at all. She was, in effect, her own prison. The teacher introduced me.
“Nicole’s got cerebral palsy too. She’s just like you.”
I looked at Nicole, looked at her aide, looked at myself. I looked at the teacher, smiling. Her self-righteous teeth. That smug way of posturing common among citizens who retweet socially-conscious activist bullshit. Nicole. Cerebral palsy. Just like me. Just like me.
Reading buddies time gave me a complex, and I know this because I only had to read with Nicole and her aide once before my mother called the school to complain. After the aide read me Go Dog, Go!, alternating between reading aloud and wiping spit from Nicole’s chin, I started worrying that soon, I’d wind up debilitated and unable to do things on my own. I imagined it as a type of spontaneous combustion: I’d go to bed my normal self one night and wake up unable to do anything. Less than human. An alien captive in a shell. (Don’t even pretend you’re offended by that—I know how you look at those people. Nobody’s above it.)
Truthfully, I didn’t know much about cerebral palsy and neither did my parents. Maybe, neither did the doctors. (I’ve had a ton of experimental shit done to me—lab rat since 1996.) What’s there to know? For one thing, it doesn’t get any better or any worse. You can dress it up with as many surgeries or therapies as you want, but the hole in the brain will never go away. It’s always irritatingly there, like a popcorn kernel in the back of your teeth. At the same time, cerebral palsy tends to cause “early aging,” meaning that even mild cases will likely result in total knee and hip replacements by age forty. I guess that’s what I have to look forward to. Hope I’ve got decent insurance by then. (Don’t you feel bad for me? Don’t you feel good feeling bad for me? So bad.)
Here’s another thing. Ever since I can remember, I’ve been encouraged to “use what I’ve got,” whatever that means. In high school I had vivid fantasies about attending a private liberal arts college, the kind of place that looks like Hogwarts, with nineteenth-century brick buildings and faded oriental rugs in the commonrooms, where students debated philosophy and came from good homes—you know, the children of lawyers or doctors or educated people instead of blue-collar folks who flip their underwear inside-out when they can’t afford to do laundry. I envisioned a landscape of forward thinkers who would never stare at me, who would respect my intellect outside of, “Wow, she’s got cerebral palsy? Good for her.”
“Kathryn, you’ll have no problem getting in—you’ve got something special.” My guidance counselor, Mrs. Loubins, was known to favor the AP students, the gifted kids in the Honor Society who pissed away their early sex lives studying textbook anatomy of the female body instead of getting nose deep into one, if you know what I’m saying. Thing is, even though I too, was a virgin, I was not an Honor Society kid. I was encouraged to take all the advanced classes and my grades were okay, but I was on track to graduate at rank twenty-seven of sixty-two, meaning my dreams of Dartmouth or Yale or Smith superiority were likely off the table.
“Special?” I knew I was pretty good with English, the only class I ever managed an A in, but I was at war with Jon Foshay for lowest grade in Calculus, and I was winning.
“You’ve got a disability!” She smiled big, like I’d pleased her with only my existence. She encouraged my delusions. Turns out, she was kind of right to do so.
Per Mrs. Loubins’ suggestion, I wrote my college application essay about how difficult cerebral palsy had made things for me. I likened myself to a cyborg—half human, half machine, struggling to find identity in a world not designed for me. (So dramatic. Can you imagine? God forbid I had to take the stairs.) A handful of schools bought the extended metaphor: in at Emerson, waitlisted at Smith, in at Mount Holyoke, in at Bryn Mawr. At twenty-seventh in the class, I was about to attend the most prestigious school anyone in Thomaston had ever attended. Most of the smart kids went to UConn because it was free. Good for them. I picked Mount Holyoke because it was an hour from home and my parents, being blue-collar folks, thought it gave me the best package. So I signed it and sent it and bragged about it—”cerebral palsy got me into an elite school”---until even Mrs. Loubins said, “Ok, we get it, you’re special.”
***
Can I be real? Can I dodge the parentheticals for a sec and speak openly about my experience at Mount Holyoke? I know it’s a “historically women’s college,” therefore a place of acceptance and love and all that bullshit so saccharine and passive I could puke. But hear me, and my disabled voice, out.
Mount Holyoke is not that accepting, not like you'd expect. Not like I expected, at least. First of all, if you’ve read my widely panned op-ed in Out Magazine (I’m sure you haven’t; they buried that shit after not paying me for my bad opinions), you know that only a certain kind of woman is cool there. That kind of woman goes to rallies and blocks traffic and wears T-shirts with niche clever sayings on them, things like “My Other Car is a Broom” and “I’m Not Gay, but my Girlfriend Is.” Mount Holyoke, for what it’s worth, was the Hogwarts fantasy I’d always wanted—I lived in a dorm room with vaulted ceilings and a walk-in closet, in a brick building wrapped with ivy. On Sundays the Kosher dining hall served brunch, and once a semester classes were canceled for “Mountain Day,” when everyone took a bus to the actual Mount Holyoke, and walked three miles up to the Summit House. (Sounds miserable, but lesbians love hiking.)
One thing I learned at Mount Holyoke is that it is very important to have something. By something, I mean some point on the axis of oppression to hang a personality on—students with anxiety disorders donned fidget spinners like political buttons, desperate for someone to ask about them. Queer students came to class with long hair one day, heads shaved the next. They’d casually run their hands over their new buzzcuts until the professor made note of the change, then gush, in that soft, sanctimonious way typical of rich liberal arts students, “I just think it’s really necessary for me to be visible as a queer person.” (At Mount Holyoke? Where literally everyone is queer? Wow, you’re so brave.) If I had a dollar for every time I rolled my eyes that semester, I’d be independently wealthy right now.
I quickly realized that I too would need a thing, but was cautious about outing myself as someone with cerebral palsy because it had already gone sideways in the weight-lifting class I was enrolled in. Even though I fucking hated exercising, part of the Mount Holyoke curriculum involved taking a physical education class once a year, so I went with weightlifting because in theory it required less effort than say, racquetball or water aerobics. I had to talk with the instructor in order to ensure she knew what my limits were, so prior to the first class we met in her office where I told her what the deal was.
“Just so you know, I don’t want this to be like, a thing, but I’ve got cerebral palsy so I’m probably not going to be able to do everything.” No treadmills, no pressure on my ankle, nothing requiring me to lift my left arm above my head because it doesn’t move that way.
“Kathryn, what are your goals here?” The instructor was also the school’s volleyball coach, and she looked like it. Female gym teacher, if you know what I’m getting at.
“None really. I hate exercising. No offense.”
“Well, is there anything you can’t do that you’d like to do?”
“I can’t ride a bike.”
She took one look at me and determined that I didn’t have a center of gravity, meaning I couldn’t stabilize a bike, meaning that during the class I’d need to focus my energy on my long-ignored left side, meaning everyone noticed. Despite my best efforts, it became a thing.
Enter Melanie. Good, Christian Melanie. It’s important to mention here that even though Mount Holyoke prided itself on being a hotbed for lesbian activity, a small group of hardline evangelicals existed there, the aggressive types who go to virginity balls with their fathers and insist on “praying for you.” Melanie was one of those. One day she cornered me after class.
“Hey, I noticed you like, limp. And you don’t do stuff like everyone else. Are you okay?”
“Yeah. I have cerebral palsy. It’s no biggie.”
“Oh, well, I’m a Christian, and I’d love to come pray for you and heal you.”
“Huh.” I was curt with her, hoping that if I said nothing and didn’t make eye contact she’d get the hint that I wasn’t interested in divine intervention. Spoiler alert: she didn’t. As the semester rolled on, slow and painful like an IV drip, she continued following me after class, inviting friends to join on my walk across campus. When I told the instructor what was happening, she told me to “use my voice.” Yeah, right. Naturally, I just stopped showing up to class.
I decided then that my thing would have to be “gay,” so I bought a t-shirt that said “Dyke” on it and started attending meetings at the LGBT center on campus. That was no better.
You’ve probably determined by now that if there’s one thing I can’t stand, it’s a virtue signaler, and Mount Holyoke had no shortage of them. At the LGBT Center, there was a chalkboard wall with a list of rules to follow, mainly kindergarten stuff like “wait your turn” and “be respectful,” but one rule was prioritized above all else, like a sacred text handed down from the goddess herself: “Step Forward, Step Back.”
Step Forward, Step Back was a campus-wide initiative. It was intended to get the overbearing to shut up, the socially-inept more involved. Did it work? I don’t know. I find that the loudest voices will always find a way to speak, and the quiet ones will always shrink when called upon to share their views. Anyway, at this particular meeting, one girl decided to make her voice heard: “Yeah, I see we’ve got ‘Step Forward, Step Back,’ written up there, but I want you to know that we should probably change it to ‘Move Forward, Move Back,’ because step indicates an ability that not everyone has.”
I laughed. I couldn’t help it. No one in that room was paraplegic or quadriplegic or physically incapacitated in any way (besides me, duh). There were students sitting criss-cross applesauce on the carpet, legs draped lazily over the arms of the sofa. No wheelchairs or leg braces in sight.
After the meeting a few of the club leaders approached me.
“Hey, it’s really not cool, laughing like that. Really disrespectful.”
I didn’t feel the need to justify myself as a “disabled person” because it didn’t matter. Who in the larger community would know they had so valiantly defended disabled students against the tyranny of laughter? No one. They weren’t there to protect me from exclusion, they were doing it for themselves.
“When you laugh at other people, it makes this space unsafe because they feel like their ideas aren’t worth taking seriously. You see?”
“Really?”
“Maybe don’t come back.”
And you know what? I didn’t go back. Fuck that. At the end of the semester, I packed up my dorm room and my 2.9 GPA and dropped out and moved home.
***
I didn’t want to write this essay, but I keep seeing calls for disabled voices at various online magazines nobody reads so I figured this is what you wanted. Isn’t it nice to know you’re doing a good thing? It’s really great for me to share my experience openly. (Maybe you pretend the parentheticals aren’t here, maybe you pretend I’m only saying the stuff that’s been pre-approved by some doctrine everyone except me agreed on.) Thank you for your time. Thank you for your consideration. God bless.
One time, in college, long after I’d re-enrolled at the local state university, one of my professors suggested I write an essay about living with cerebral palsy.
“You never talk about it,” he said. “I don’t know why. There’s a big market for that kind of thing right now.”
I didn’t know how to say “no” and I obviously still don’t (Look, here comes the wind-down; your vicarious suffering is almost over!). I don’t know why I feel so compelled toward agreeableness all the time. I want to be direct: it is not cerebral palsy that has made my circumstances difficult, but the people around me who insist I make it known so that they can feel a sense of personal achievement when they bend over backwards to do something I never asked for. I’m not a martyr. I don’t need hollow tweets or prompts requesting I illustrate my surgical history in one-thousand words or less. I’m not a stepping stone for your path to progressive liberal enlightenment. Stop looking at me.
Here’s one for the road: I still can’t ride a bike, and it’s not for a lack of trying. Over the years my parents made every effort to help me. There’ve been mountain bikes with adult-sized training wheels and recumbent bikes that don’t require balance. They all went away after a while, strung up on the garage ceiling next to the ladders and hoses and spare car parts. Honestly, what adult wants to be seen in training wheels? Or for that matter what twelve year old? I’ve had too many strangers point at my leg brace in public and ask if I was okay. Get real. I’m never okay. Isn’t that what you want me to say?
