One of the first things I remember is being carried on my mom’s hip from our house to our neighbors’, where their high-school-aged son was playing music too loud. “You need to turn down the volume,” she said after he’d opened the door. My mom stood resolute in her command, my two-year-old body proof of her seriousness. Our neighbor turned down the music, and my mom and I went home.
Between their realization that my muscles weren’t working as my doctors thought muscles should, and the purchase of a powered wheelchair for me when I was five, my mother and father carried me everywhere: throughout the house, to the car, into the world. I lived at the height of adults, not table legs and knees, in a different world from the clumsy explorations of my upright toddler peers (although I still crawled, moving to pet our cat, Louie, or to reach for toys).
This continued until I saw a toddler-sized manual wheelchair in our garage. My parents had placed it there for safekeeping, still somewhat in denial that I needed it. From my perch in my mom’s arms, I reached for this miniature mobility device, squealing, eyes wide, clearly wanting. Witnessing my joy at seeing this wheelchair, something I intuitively knew could bring me freedom, pushed my parents to give in and accept the reality that my body worked differently from other two-year-olds’; that it could join with a mechanical chair and together become something new and unexpected and beautiful.
Because our dining-room floor was slanted, I would roll backward if my parents forgot to engage the brakes on my wheelchair. To my mind this was a minor inconvenience in the face of new opportunity. Still, older buildings are rarely hospitable to certain bodies, and within a year my family would move to a new house, one built to be more accessible to wheels, which meant no steps — except to the basement, where we eventually installed a lift. Upstairs the floorboards didn’t slant enough for my tiny mechanical body to roll undirected by my hands.
When I was eight, I had intensive back surgery in which a titanium rod was fused to my spine to straighten its curve as best it could. Still, my body wasn’t new, just different than it had been pre-op.
In fourth grade, a year after my surgery, I got a new power wheelchair. The Levo Combi was a beautiful upgrade, a special wheelchair made in Switzerland that can recline and stand up. The different positions it afforded gave me much more bodily autonomy.
My classmates clapped as I raised my new chair into a standing position. You could read this as my peers celebrating normativity, but it wasn’t — they were echoing my excitement, which was born from a new ability to see the world from a different height and perspective, to feel my body in a new shape.
I got my second Levo Combi as a sophomore in high school. By this time my body could no longer support standing all the way up in my wheelchair, although the ability to raise myself partway was still crucial for my day-to-day life. Six years after my second Levo Combi, while attending the University of Iowa, I had to battle my insurance company to get a third. Codes had changed, apparently. Other companies, such as Permobil, were now making chairs that provided similar mobility, and, because of this, insurance would no longer cover the more expensive Swiss brand.
“It does the same thing as your old wheelchair,” the reps from Permobil kept telling me about the model I had agreed to try. Even the people who worked at the medical supply and repair store said this. And if you looked at the two wheelchairs side by side, without my body in either one, it was hard to argue. The reclined and elevated positions both could achieve were essentially the same, but the paths the chairs took to get to these points were quite different.
I had difficulty articulating this difference in words, though my body understood it implicitly. To explain all of this to the Permobil reps and wheelchair-repair people, I contorted myself into increasingly uncomfortable positions under their gaze, demonstrating how the Permobil wheelchair made my body flop and slouch. The specific ways the gears and hydraulics moved shattered the semblance of control I had in the Levo, which melded itself to my curves, becoming an extension of my body. The Permobil was not in tune with my muscles and bones and senses and blood. This body was not mine.
I have been out of the country just once, for a summer writing program through the University of Iowa. The six-week trip began with an eight-hour flight to Ireland.
Being on a plane forces me to confront the ways my body differs starkly from most of the bodies around it. My wheelchair is not allowed to board with me, and plane seats do not arrange themselves to fit my specific curves. On the flight to Dublin I was suddenly without half of myself. It was not a peaceful separation, but a tearing apart that began when airport security took me aside to pat me down, maneuvering my limbs in ways I am unable to do on my own. (The metal in my back, not to mention the metal of my wheelchair, would set off the detector.)
At some point during the plane ride I stretched across the laps of my two helpers. Because I am relatively small, and because contractures in my knees and hips mean that “fully stretched out” does not equal flat, I fit easily across their two sets of legs. I tried to sleep through the shifting night but couldn’t. Airports are in-between places, and airplanes even more so. While my flesh-and-blood body moved uncomfortably across time zones, my machine body was below me in the cargo hold, smashed together and folded in on itself, uncomfortable in its own way.
I had spent years longing to visit Ireland, believing that in such a place I would somehow feel at home in my body. Throughout my childhood and teen years, which were clouded by anxiety and depression, I held on to a belief that the earth there could heal me. Not heal my body, understand, but relieve my itching desire to leave it. I had visions of letting myself sink into soft green ground and feeling at peace. I wanted so badly to view the natural world as the balm so many claimed it to be, but I had no idea how to balance this desire with my mechanical body, and by extension all the technology I needed to live.
When I arrived in Ireland that summer, I was confronted with a terrain that was uneven, broken, and often inaccessible to wheels. The cobbled streets jarred my body — mechanical and flesh — and I had to drive in fits and spurts, pausing periodically to recover from the bumps. The steps of buildings barred me from access, which meant I was unable to enter many of the restaurants, pubs, and bookstores that my peers explored after our classes together.
And yet I felt a particular love for this temporary home. While touring Clonmacnoise — an abandoned monastery whose flush-with-the-ground gravestones I rolled over, aware that I was putting my living body on top of the dead — I thought about how it was all too easy to fall in love with Ireland, just as I’d suspected, as a child, it would be. As an adult I didn’t know the reason for this love, but I sensed it had to do with the crisp air and the green pushing through the stones beneath my wheels, seeming to signify a refusal to be buried. I realize the irony of my infatuation with this place, considering how little of it I could access, but love often defies logic, and always defies control.
I thought our monastery tour guide was too charming, trying too hard to be funny. I was in the minority on this (other members of the program would later gush over him), but, in the moment, I knew this was too marvelous a place for me to spend time listening to someone’s rehearsed history. So I turned my wheelchair and left the crowd, wandering away from the living and meandering among the dead. This, of course, was not entirely true, as the cemetery was overtaken with green life, and the River Shannon curled its way past, its water feeding the plants and animals that had made Clonmacnoise their home.
What would it take for me to no longer want to leave my body? What would it take for me to see my body as my home? I don’t know, really, except perhaps more exposure to different ideas about disability, different ideas about beauty and worth.
It’s safe to say that most teenagers have body-image issues, though teenagers like I was, with markedly distinct physical differences, experience these issues at an even higher rate. I took wheelchair dance classes throughout middle and high school, and it was in the floor-length mirror of our dance studio that I was first struck by how different my body looked compared to those of my able-bodied dance partners. This memory seared itself in my mind: my legs couched in navy sweatpants, a gray shirt with multicolored hearts printed on it covering my top. It had been my favorite shirt in middle school. Now the way it was reflected back to me, hugging my curved torso, made my shoulders appear to sag. I knew then that my body didn’t “make sense.” It would take years of finding a home in my disability community — and an eventual day of looking in my bathroom mirror and deciding to stop hating what I saw there — before I realized that my body did make sense, even if society deemed that it didn’t.
Disability-studies scholar Rosemarie Garland-Thomson refers to the “disabled figure” as a constructed idea that stands in “for all forms that culture deems nonnormative.” That is to say, the disabled figure is not real, but merely a compilation of all characteristics that fall outside of “normal” — another constructed idea. My form is nonnormative, but I am not the “disabled figure,” which exists only in our culture’s collective consciousness, including mine. I didn’t recognize myself in the mirror that night at the dance studio. Once I did recognize myself, it didn’t feel right.
Even in that mirror, though, my flesh-and-blood body was in tune with my machine body. I may have despised who I saw looking back at me, but my wheelchair allowed my body to move in the way I had grown accustomed to.
Before it became clear the Permobil wouldn’t work for me, I sat in my apartment in Iowa City as my new wheelchair was unboxed in my living room.
“It feels a little off,” I said once my helper had lifted me into the seat and positioned me so I was comfortable.
Phic, the wheelchair technician, fiddled with the chair, moving the armrests closer to my body and tilting the headrest down. Eventually he said, “That’s all I can do. It might just take getting used to.” Getting used to was something I was familiar with, but as the day wore on, my body began to understand a different truth: the mechanical body held tiny differences from what my flesh-and-blood body needed, but they were large enough to matter. Even the slightest change in positioning altered the way I sat. It affected my ability to hold myself upright, or bring a forkful of food to my mouth, or type words on the keyboard.
After I managed to eat dinner, I FaceTimed my parents and attempted to explain the shortcomings of my new Permobil. I hadn’t intended to start crying, but I did. Having my wheelchair out of sync with the rest of me affected everything I did. When one half of your body does not mesh with the other half, you feel less at home.
Some separations between flesh-and-blood body and mechanical body are regular and inconsequential: lying in bed at night, taking a shower, using the bathroom. Others are less regular and also less pleasant, like sitting uncomfortably in an airplane seat for eight hours, even if the plane is headed somewhere you want to go. Still others are infrequent — rare, even — but are so intertwined with the moment that they sparkle with a certain magic.
One day in Ireland, for less than thirty minutes, I separated myself from my mechanical body to visit the Mini Cliffs, an outcropping of moonlike stones a short drive from their much larger cousins, the Cliffs of Moher. Despite having been resistant to the idea of bringing along a stroller — a type of manual chair — on this trip, I thought the Mini Cliffs were the perfect opportunity to use it to get close to the ocean, where the powered wheelchair couldn’t go.
Like the cobblestone streets, the terrain under the stroller was bumpy, but I managed. Fi, a fellow student with whom I would later connect over chronic illness, sat on the ground beside me and commented on the tiny purple flowers growing between the cracks in the rocks. The flowers made me think of the carved angel face hidden behind a pillar in a church we’d toured earlier that weekend: in a rage against iconography, Protestants had smashed the stone angel faces in St. Nicholas’s Church, missing this one only because of its hiding spot. It wasn’t supposed to be there, but it had survived.
Facing the Atlantic, my body held by the purple cloth of the stroller, I looked down at the tiny purple petals. For the first time that I could remember, my feet were touching the ground. I would later describe this sight as “reassuring,” though now I’m not sure if that’s the correct word. Steadying, perhaps. Or triumphant, although not triumphant in that I was no longer in my wheelchair; triumphant in a way that existed quietly inside me: I had managed to honor my younger self’s desire to put my body in touch with Ireland’s terrain. I took one of my favorite photos of the trip right then: my black combat boots framed against the stone, the darkened craters in the rock ringed in green.
Years later I’d take part in a creative-nonfiction workshop with the theme “Boots on the Ground” — that is, writing through wandering, in the style of the old and apparent greats who wrote meandering essays about, yes, meandering on their two legs. Perhaps in a moment of subconscious defiance, I turned in an essay for the workshop that included a description of my black combat boots against the moonlike stone and green grass. “I just have to say it,” another student commented: “If the theme is ‘Boots on the Ground,’ she did it. She actually gave us boots on the ground.” And indeed I had, I realized. Boots on the fucking ground.
In Bray, a short train ride from Dublin, a group of us hiked along the seaside, the gray-blue water on the left of us, the sides of cliffs to our right. The path was mostly gravel, with patches of concrete every now and then. Like the cobblestones, it wasn’t easy to drive on. I was exhausted by the end of our hike, and the stones had shaken loose a screw from my rear tire, leaving the back end of my wheelchair bent. I wouldn’t be able to get it fixed until I returned to the U.S. (Over twenty-some years of owning a power wheelchair, I have been told countless times by repair people that the chair is not meant for such harsh terrain — as if it weren’t the body I take with me wherever I go.)
That night, while eating ice cream for dinner and looking out at the sea from the coast of Ireland, I felt a heaviness invade my limbs — the heaviness that always precedes sickness. I had been trained by a lifetime of listening to my body to know what the dryness at the back of my throat meant. The fear of getting sick — and losing whatever semblance of control I have over my body — kicked in after I woke in the middle of the night with an itchy throat, which quickly turned to pain, and then to shallow, weak breaths. Illness throws me into the ocean of my depression, the waves crashing my mind against the jagged shore. Once I’m there, only a tiny part of me even cares about getting better. I become someone I want to crawl away from.
The student-health doctor put me on an aggressive antibiotic because she knew my lungs were weak. My mom ended up flying to Ireland to help, walking into our communal kitchen shortly after landing in Dublin. I was eating mac and cheese, and the minute I saw her, I cried tears of relief.
My two helpers and I had planned to visit another country, maybe Spain, after my classes were over. Instead we paid a fee to change our flights and left the sea-soaked air of Ireland for the U.S. About a week later I was no longer coughing, just dealing with an upset stomach from the antibiotics, and once again estranged from my mechanical body while an illness ran its course in my flesh-and-blood self.
I had a friend in college who worked for the school newspaper, like I did. He wrote a story once that compared my experience battling the insurance company with the experience of a much younger girl who had the same disease I do and was taking a new treatment — the first drug approved by the FDA for spinal muscular atrophy. While this younger girl had decided to receive the injections, I’d chosen not to (for the time being) because of the very specific hoops my body would have to jump through.
While my friend was working on this story, he showed the first draft to a journalism professor we’d both had. “Bloom hated it,” my friend told me. “He said you wouldn’t like it, either.”
I convinced him to hand over the story, which opened with a scene of the Permobil chair being delivered to my apartment: cardboard all over, the sound of a box cutter, the chair being assembled. “It’s hard setting up a throne for a queen,” Phic, the wheelchair technician, was quoted as saying.
I handed the draft back. “Change it,” I said. “Cut the quote. You don’t need it, and that’s not me.” I didn’t mind the banter from Phic, who had known me since I was little. But without that context, his words fell flat and made me cringe. It’s not a throne, I thought. It’s a part of my body.
The Cyborg Jillian Weise is a disabled poet, novelist, and tenured professor at Florida State University who asks to be addressed as Cy — short for Cyborg — in clear opposition to the erasure of disabled people who rely on technology like Cy’s bionic leg. (Cy also uses “Cy” as pronouns.) We aren’t some futuristic vision, just humans trying to survive. Cy has had several bionic legs. At the time of Cy’s 2020 essay “Common Cyborg,” Cy’s bionic leg was called 3C98-3 and worked only if Cy stayed within a weight range of 100 to 105 pounds. Cy had taken 638,402 steps on this leg. The previous leg had malfunctioned.
“Maybe this feeling of trial and error, repetition and glitch, is part of the cyborg condition and, by extension, the disabled condition,” Cy writes.
It is. The experience of needing this technology is in fact very corporeal — the opposite of virtual reality. Being intertwined with machines does not remove us from our bodies; it keeps us rooted in them.
During the heat-soaked Iowa summer of my war with the insurance company, the chair that I use to shower caught a wheel on a snarl of carpet on the way into my bedroom. The chair tipped forward, and I fell. Although my helper was able to stop my head from hitting the floor, my legs absorbed most of the impact. My unmoving, dependable legs.
As I lay crumpled, the ceiling above me blurred in and out of focus. I had never fallen from my wheelchair or other mobility device before, yet here I was — in, yet out of, my body. I was hot, then cold. Sweat broke out on my skin, and something within me began to throb. I didn’t recognize the wobbly voice that came out of my mouth and traveled back to my ears as if underwater: “It’s going to be all right, it’s going to be all right,” assurances as much to myself as to my helper, who was crying above me.
My right leg, the one more injured, swelled a bit and took on a purple, then green, hue, but it never looked as terrible as it felt. For this I couldn’t forgive my body.
As I healed, my helpers would have to move my cat, Mercury, off my injured leg time and again, until finally he lay down beside me and placed his paw on my bruised skin without pressing down. I read this as a gesture of protection, even if it was merely my attempt to find meaning in a time filled with so much physical pain.
I’d chosen Mercury over all the other cats at the shelter in part because of the level of comfort he displayed toward my chair. Whereas other cats acted skittish around my wheels, sniffing tentatively and then walking away or else avoiding them altogether, Mercury came right up, sniffed my chair, and then jumped on my lap. During our first year together, he would sit in my wheelchair when I was out of it to get in bed or use the bathroom. He doesn’t do this much anymore, but at least daily he will jump onto my armrest and sometimes ride around with me. Of course, I can’t read my cat’s mind, but it seems fair to say that he views my wheelchair as an extension of my body. That is, he regards the whirring machine as a part of the flesh-and-blood me, the beating of the heart and the jostling of the bones.
As of 2016, only 5 percent of those in the U.S. who need wheelchairs don’t have one (compared to a staggering 90 percent in what are considered “developing” countries). Still, these statistics don’t tell the whole story. Just because someone has a wheelchair doesn’t mean it’s the one they need. Across the globe, including here in the U.S., simply delivering a wheelchair to someone’s home has been the main focus of wheelchair “provision.” This is assuming that someone’s insurance covers the mobility device they need, and, if it doesn’t, that they have a circle of supportive advocates who will do all they can to change the insurance company’s mind.
“You know, I think I get it,” the Permobil rep said to me one day during a trial run, kneeling beside me in his button-down shirt and khakis. “My wife and I talk about experiential knowing versus practical knowing — this is experiential knowing.”
I was pleasantly shocked, and I smiled. “Yes,” I said. “Exactly.”
We made videos explaining the differences between the wheelchairs; elicited letters from other Permobil reps, who agreed their chair would not work for me; and sent everything to the insurance company. Insurance finally caved.
By the time the paperwork was processed, my new Levo Combi had to be delivered to me in Kansas, where I had already moved to attend grad school. Being transferred into the seat brought an echo of what I had felt sitting in the Permobil — all new chairs feel slightly different — but only an echo.
Perhaps the tiny miracle planted within each transition to a new wheelchair is my body’s eventual ability to feel at home in the new metal, the new cushions, the new machine. This in spite of the small differences even between chairs of the exact same model; in spite of the natural wear and tear of years spent living in a chair and the way my muscles relax into those changes.
Still, I hesitate to flatten the experience into something simpler than it is — this tiny miracle takes time and is only possible when the differences between chairs are, in fact, tiny as well.
Like most things, the phrase “small differences” holds a truth that is relative.
In Kansas, suddenly surrounded by people unfamiliar with my body and how it worked, I found myself hyperalert to others’ perceptions, always wondering if the boundary between my flesh-and-blood body and my machine body had dissolved in their eyes. As I made friends and grew comfortable with my new helpers, this constant awareness faded into the background. Still, I sheltered deep within me a longing to go home, spurred in part by various accessibility barriers on the new campus and in the new town. I was so miserable at one point that I looked into graduating early and doing my last semester back in Iowa. Then, halfway through my three-year program, COVID hit, and I was forced to move home anyway. In the face of a global pandemic, my wheelchair became a physical signifier of my position as high-risk, and home became something filled with grief and flickering in its comfort.
Today I am most aware of the relationship between my flesh-and-blood body and my machine body in how my right arm sometimes struggles to move on and off the armrest. This is made more difficult by baggy clothes, which means it’s worse in cold weather. The space between the skin of my arm and the control unit where the power button and joystick live is one I am constantly navigating, hoping it will lessen so that machine-me and flesh-and-blood-me will work more in tandem. There’s no guarantee this will ever happen. Just as bodies change over time, machines do, too. I hesitate to label this change “breaking down,” as this implies a failure. In reality it is just a deviation from an arbitrarily decided norm.
Boundaries keep shifting. Machine bodies joined to flesh-and-blood bodies appear in ever-changing iterations, some more easily separated than others. Every body is a little different, made up of different parts.
In Ireland we kept the dorm-room windows open most days to let in the fresh air. When I was sick, I lay cocooned in blankets with the windows cracked, wild air spilling through the opening between glass and wood. I’d pull that air into my flesh-and-blood lungs, then struggle to cough back out. My mechanical body sat beside my bed, waiting.
