Access by Kathryn Fitzpatrick

The first time I didn’t belong, I was enrolled in a summer program at Monkey Business Children’s Gym. Monkey Business was a birthday party kind of place, padded wall-to-wall with oversized puzzle pieces. All indoor, stinking like piss and Pine-Sol. They had jungle gyms and slides and a business arrangement with the pizza place across the shopping plaza for a 50% discount on any large one-topping. They also hosted this program for “stunted” children: those who couldn’t speak, those in wheelchairs, kids with every possible syndrome thrown together, let loose on the plastic trapeze sets and foam ramps. It was meant as a type of early socialization for students entering kindergarten, strongly encouraged for all who had an assistance plan.

It was loud there, always humming with screams and the harsh slapping noise of bodies crashing into each other. Each day, someone left in tears, with a new wound. Once, two kids were escorted out together when Wyatt, who didn’t speak, lodged his tooth in somebody else’s back.

I was walking at this point but found myself spending time with the wheelchair kids — they got to hang out in the lunchroom 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 refused the parachute exercises and sing-alongs and craft time, only leaving my cave to participate in story time, where we read Brown Bear, Brown Bear together, and I showed off my sophistication by shouting “cardinal” over everyone each time the red bird came up. I knew what a cardinal looked like and I didn’t need to be there, and my mother reassured me of this fact every time she dropped me off: You are not like them.  

At the end of the summer, I got sent home with a note from the counselors that said I had a hard time interacting with other children.

***        

I was diagnosed with cerebral palsy at 3. (Cerebral palsy, an umbrella term for localized brain damage resulting in poor motor function — here meaning left leg muscle spasms, a lack of fine motor skills, stunted growth on the left side, an instable left ankle, drop foot on the left side, low muscle tone, and a lazy eye.) If you asked my parents, they’d say that when I took to rolling around everywhere instead of walking or crawling, they knew immediately something wasn’t right. My grandmother has a different story.  

Always one for keeping up appearances, my grandmother knew how to make people think she was better than she was. She shopped at the Talbot’s Outlet store with a stack of coupons, bought flower-patterned jackets and those embroidered T-shirts depicting Cape Cod seascapes to make other old ladies think she had money. She was nice at church, always so nice that people made a point to tell her. “Oh Bev!” they’d gush. “You’re a saint!” or “You work so hard!” or “I don’t know how you do it!” At home, though, there was always something not right, something to comment on. She’d tell us how Edie Galousha looked like shit this past week, or how disgusted she was that Pastor Marcus ran the service in jeans.

“Those young California types are so unprofessional! Jeans. Can you imagine that?”

As an infant, I was always involved in her schemes to give off the illusion of perfection. We went to restaurants, nice restaurants I didn’t know we couldn’t afford where, at a year old, I was taught how to order shrimp scampi and clams casino, how to differentiate between a salad fork and the big fork used for the entrée. I knew how to mimic the way adults spoke with the waitress, and I learned never to speak.

“You were the easiest, most perfect baby,” she’ll say. “Didn’t cry, didn’t get into things. You know, we could take you into restaurants and you’d just sit there all quiet and good. People were always so impressed. And all because you couldn’t walk!”

She always beams as if silence is a good thing. As if a dog shoved in a purse is the model dog. I’ve been chasing that sort of perfection since birth.

***

There are three subtypes of cerebral palsy: dyskinetic, ataxic, and spastic. I know them all, studied them in secret to better understand my own shortcomings. Growing up, no one bothered to tell me what it meant that I couldn’t go to pool parties or had to come straight home on Tuesday afternoons for physical therapy.

In first grade, we had reading buddies time, an hour of the day when the third graders came down from their wing to read to us. We were all paired off based on interests, things like sports teams and music and hobbies.

I was paired with Nicole, a girl two years older than me who also had cerebral palsy. Teachers probably thought it would give me a sense of community, but it didn’t. She didn’t have hobbies. She didn’t speak, only communicating through a series of buttons on her wheelchair. Her mouth always hung open and dripped a steady stream of mucus, which her aide spent the hour wiping away. I didn’t know what was wrong with her, only that there was no possible way we were the same.

Here’s the difference: Those with dyskinetic cerebral palsy are prone to uncontrollable movements and tremors. Children diagnosed with ataxic cerebral palsy may never be able to communicate.

Spastic is the most common and varied: some of us in wheelchairs, some of us with leg braces or crutches or a walker or a limp. Doctors will tell parents their children with spastic can lead fulfilling lives after medical intervention.

Fulfilling, of course, is largely determined by cultural standards: having a job, marriage, children, being a productive member of society. Advice blogs might claim that a life well lived is determined by romantic ideals of finding purpose and doing good in the world, but I think that’s bullshit. Fulfilling, in this context, means normal. Invisible.

I’ve worked hard, disappearing. To look at me now, you wouldn’t know I spent years in hospitals having the tendons in my foot snapped and rerouted. There was a decade of leg braces, routine Botox injections, physical therapy every Tuesday after school. Freshman year, I got pushed through the hallways in a wheelchair by a woman who wore seasonally themed vests and elastic-waist jeans up to her tits.

“Mom Jean Lady is coming for you,” the other students would say. And five minutes before the end of class, she’d appear in the doorway and we’d all laugh: me, hanging my head all melodramatic, everyone else waving and cheering like I was the Pope.

It was my decision to make a joke of the situation, and everyone laughed because I laughed. The same year, I won the nomination for class president with the campaign slogan, “Fitzpatrick: Rolling Past the Competition.”

No one in high school ever singled me out or questioned why I couldn’t do things; I had existed in proximity to all of them since kindergarten, disappearing once every couple years for bone restructuring, and coming back like nothing happened. My graduating class was 62 kids, each of us similarly sheltered to life outside our own community. Most of us would grow up to stay there as our parents did before us, become registered nurses or teachers or run landscaping companies, folding back into the town as neighbors, giving the occasional polite nod at the Country Grocer.

***

If I’m being honest, cerebral palsy hasn’t affected my life in any substantial way, as much as others might want it to. I can’t ride a bike or swim or wear flip-flops or heels, but the minor inconveniences of limited mobility haven’t made my life any less average. For years, I’ve been pressed to acknowledge myself as a martyr or tragic hero, some sort of Girl Scout project toward a good Samaritan badge.

In my first semester of college, I took a weightlifting class full of Christians. This was at Mount Holyoke College, a women’s school, and the physical education requirement was a residual policy from the days of ankle-length dresses and etiquette lessons. By the time I was there, the school was loaded with lesbians, but a vocal subgroup existed, filled with religious girls who feared men like demigods and went to virginity balls with their fathers.

Before the class started, I stopped by the instructor’s office in order to give her the rundown on what I couldn’t do: treadmills, anything requiring me to lift my left arm above my head. Doctors feared the treadmill would put too much impact on my ankle, which was permanently fixed in a ninety-degree angle, and my shoulder and elbow didn’t extend all the way, so the bench press was a no-go.

The instructor was the school’s volleyball coach.

“Here’s what we’re gonna do,” she said. When she spoke, she leaned over in her chair, spread-eagle, like she was prepping for game day. “When I teach this course, I ask students ‘what is it you want to achieve here?’ What’s your goal for this class?”

I explained that I hated exercise and was only enrolled because it seemed easier and less humiliating than water aerobics.

“OK, but is there anything you can’t do that you’d like to?”

“I can’t ride a bike.”

During class, we worked on building muscle on my left side, and I wasn’t allowed to use anything on my right. I didn’t have a center of balance, she said, and that’s why I couldn’t stabilize a bike. But it was more than that. The feeling of weightlessness, of letting go, the way the stomach lurches to the throat on that initial push onto pavement. Falling. Failing.

It didn’t take long for the Christians to notice. One day, after class, this girl Melanie approached me as we were walking out.

“How come you don’t do the pull-up bar with everyone else?”

“Poor upper body strength? Lack of motivation?” I laughed.

“No but like, you limp everywhere. Are you injured?”

“No, I have cerebral palsy.”

We were clear across campus by this point and she was still asking questions: Does it hurt? Not really. Are you sad you can’t do things like the rest of us? No. What dorm are you in? North Rockies, fourth floor.

In his book I’m Special: And Other Lies We Tell Ourselves, Ryan O’Connell explains away his cerebral palsy with a tragic car accident. If only I had the quick wit to make up such an excuse.

“Well listen,” Melanie said. “I’m a Christian, and me and a bunch of other girls in the class would love to come heal you sometime when you’re not busy.”

I said I was very busy, but each week the cluster around me doubled, chanting slogans like, “God is good!” or “Jesus heals!” Badgering me day after day to come to my dorm room for some “laying on of hands” ceremony. I never found a way to tell them I wasn’t interested.

By mid-semester, I had stopped showing up to weightlifting to avoid them.  By the end, I had dropped out of college altogether.

***

It takes a vulnerable person to disclose inability to another, to say, “I can’t” or, “that’s hard for me to do.” I was raised in a family where competition and hard work fueled every decision, where “suck it up, Sally” was the daily mantra, and “don’t show weakness” the foundation on which my parents built a home. We lived in a house we couldn’t afford, went on yearly vacations, and pretended the whole world was within our reach.  

This is where I learned never to talk about things I couldn’t do, how to avoid those things completely and pretend they weren’t happening. I learned to find shoes that hid how my foot drooped and how to mask my pain after walking or standing for too long. I told a previous lover never to touch my feet because they were disgusting, which is true, but I should have told her there are three hard knots under my skin from the surgeries, like three small, plastic beads that will never disintegrate, and they make me cringe every time my hand brushes against them while I’m putting on socks, so you’ll probably be more disgusted with my body than I am because I live with it every day.

The bank foreclosed on my parents’ house in February of 2018, barely a week after they purchased a new sofa set for the family room. Three months later, they were divorced. I wish they had the balls to downsize.

***

I took this writing course in college and, having exhausted all ideas for possible topics, my professor suggested I write about having cerebral palsy.

“You never bring it up, and I don’t know why,” he said. “There’s a big market for disability writing right now.”

I was only mildly offended to be viewed in terms of a market, like prized cattle, so I didn’t say anything about it.

“I don’t need people thinking I’m weak or whatever.”

I know that’s only part of it. I don’t need people thinking I’m weak, or pathetic, or some activist ready to fight for my rights. I’m not. But there are days when I get home from work after a 10-hour shift, my ankle red and swollen and soft like overripe fruit, and I wish I had the balls to ask for a chair.

Even now, twenty-five, living alone and a thousand miles from home, I find that inconveniencing myself in order to create distance from other disabled people is an instinct I cannot break. Like my parents before me, I have a deep need to show that I am not like them. I am easy. I am agreeable. I am quiet and nice and normal and compliant, and no one will ever see anything different.

But getting older, it’s become harder to deny that there are things I can’t do. Over the summer, I fractured my ankle walking to work. Weeks went by, months, and I continued walking until the area was a purple mass of blood and pus. Until I fell in the street and couldn’t stand up, and, with no one around, had to call my mom to come get me. Embarrassing.

Now I am back in a brace, and it’s harder to hide what I can’t do. But I am still walking, waiting for the next bone to snap.

***

When I was younger, my physical therapist, Amy, put me in touch with another girl on her workload in order to purchase a used recumbent bicycle intended for children with balance issues. Three-wheeled and low to the ground, the bike could be maneuvered by shifting one’s body weight in a specific direction.

“She’s a lot like you,” Amy said. “She’s got it on her lower half, instead of her left, but get this: Her name’s Katie Patrick.”

To this day, I don’t know if it was legal for Amy to tell me about this other patient, name so similar to mine we could have been mixed up in a yearbook, but we all drove over to her house — me, Amy, my parents — picked up the bike, made small talk about things we’d done, things we couldn’t do. Katie had joined the marching band and started an army donation drive at her school. Well-adjusted. I was 13 and weird. Katie was preparing to move off to college.  

“It’s really fun,” Katie said. “When you ride it, people are gonna look at you and be like, ‘what’s that?”

I am sure she intended to be positive or sisterly here, encouraging me to go out and show off my new Franken-bike. But I thought of the day trips my mother brought me on when I was younger, the strangers pointing at my leg brace and asking, “What’s wrong with her?” I wanted a mountain bike like everybody else.

My parents paid her $500. We took the bike home. It sat in our garage for years, untouched and unseen.

From our brief interaction, I could tell that Katie was comfortable talking about disability, existing as a person in the world.

We were not the same.                 

STORY IMAGE CREDIT: Flickr Creative Commons/lrudayam