The Everyday and Disability
By: Jorge Cartaya
A stranger stopped me on my walk to the library from the parking garbage. “Are you okay?” he asked.
I knew exactly what he meant. “Oh, yes,” I said immediately. “But thank you for checking.”
“No problem,” he said. “So…it’s a natural limp?”
“Kind of,” I replied. “It’s a sort of — vestige of a brain surgery I had a long time ago, when I was a kid.”
Variations of his questions have recurred frequently throughout my life, and I fully expect them to continue. The response I offered him is my practiced, abbreviated version of the story: enough to communicate that I am not currently experiencing any pain, as well as to explain the reason for my noticeable limping.
Here is the longer version:
I had my first focal seizure when I was six-years-old. I was at my grandparents’ house with my aunt, who often looked after me while my parents were at work. I remember that I was watching the film Inspector Gadget on the Disney Channel when I suddenly lost control of my left arm. After the violent tremors had subsided, I could barely move my arm. When I would try to lift and hold it over my head, it would drop back down onto the armrest — seemingly of its own accord.
A few doctors’ appointments, MRIs, and CAT scans later, it was determined that I had a half-centimeter tumor pressed against my right motor cortex, which is the part of the brain that controls voluntary movement on the left side of the body. The subsequent surgical procedure to remove it was successful, but left behind a great deal of swelling and scar tissue in its wake. As a consequence, the neural pathways I’d developed and used to move my left arm and leg since infancy were no longer usable. After my surgery, I could no longer move my left arm or leg.
But my surgery on its own only explains part of why I limp. With rehabilitative therapy, I was able to work on creating new neural pathways with which to control my limbs. Occupational therapy, which focused on rehabilitating my arm, involved activities like touching my thumb to each finger, making a fist, and generally practicing everyday actions like picking up and collecting coins or opening doors with my left hand. Physical therapy, on the other hand, focused on rehabilitating my leg and included activities like relearning how to wiggle my toes, bend my knee, walk (then run) or a treadmill, and climb stairs. At first, I attended sessions with my therapists five days a week. Within a couple months, I was recovering well enough to reduce that load to three times a week.
The fact that I can use my left limbs at all today testifies to the concerted efforts of my therapists and my family.
That said, I only received physical therapy for about five or six months. My surgery happened on August 19th, 1999. By February of the following year, my parents’ insurance company began refusing to cover any additional sessions with my therapists.
I was seven-years-old at the time, so I only remember that the visits to the hospital stopped abruptly. My parents explained that my father’s employer switched the insurance company we had previously, Humana, to Signa, which turned down an appeal from my neurologist, neurosurgeon, and therapists with the conclusion that I no longer needed any rehabilitative therapy. By Signa’s metric, I was recovered, or at least recovered enough.
Until recently, I would have agreed with them. It’s hard not to, from a brutally minimalistic point of view. I can walk, run, climb stairs, and jump — albeit clumsily, even precariously (I often trip over my own foot, which tends to drag along when I take a step); I can pick things up (but not for long, if it’s heavy) and type on a keyboard (with my left index finger only). Of course, I’ve always been aware that I could have performed all these basic, everyday activities quicker and easier had I never had a brain tumor or I could, but I came to accept these impairments as my body’s limitations. I have learned to compensate well enough that I can navigate my day-to-day life efficiently enough. Most days, the only evidence of the past I’ve just shared with you is my limping.
But my limp is only the most visible sign of my disability. If I walk or run too much or for too long, a sharp, debilitating pain begins to flare in my ankle with each step I take. When I visited a podiatrist to address the issue in my teens, several years after both my brain surgery and Signa’s discontinuation of my therapy, he told us that the tendon running along the back of my calf had hardened from disuse and misuse.
It’s not that my surgery caused my tendon to harden — at least not directly. It’s that I was never taught how to use that part of my leg properly. Over time, the possibility that I ever could relearn how became less and less likely with the atrophy of my tendon.
As it is now, I would need corrective surgery to loosen the tendon. But even if I do, there is no guarantee that I’ll be able to use that tendon again, or learn how to correct the way my left foot tends to drag along the ground. If left untreated, my podiatrist went on to explain, I am likely to develop complications like arthritis as I get older.
I ultimately opted not to go through with the procedure back then, but I’ve been revisiting the option — as well as the circumstances that have created this particular option — in my thoughts often.
Even so, I still struggle with the label “disabled.” Not because I feel ashamed of my body’s limitations, but because I feel as though those limitations are not severe enough to warrant the label. Under the Americans with Disabilities Act, a disability is defined as “a physical or mental impairment that substantially limits one or more major life activities.” The World Health Organization adds, “Disability is thus not just a health problem. It is a complex phenomenon, reflecting the interaction between features of a person’s body and features of the society in which he or she lives.” According to the Center for Disease Control:
There is a refrain that my parents and grandparents often recited to me in Spanish when I was a child: “Always look back and you’ll see someone who’s worse off than you are.” And it’s true. I do not need a mobility aid to navigate most spaces. I know that I am not able-bodied, but until recently I have largely balked at the idea of calling myself “disabled.”
A factor that has significantly colored my thinking in this matter is location. My hometown of Miami — where I was born, raised, and still live in — is a mostly level or flat town. If I were to walk around the city, I would not have to contend with any hills or inclines, which makes moving through its spaces fairly simple. Of course, I can still walk too much and trigger my ankle pain. That said, most multi-story buildings I’ve visited also have elevators, which give me the option to avoid the stairs if I am feeling too tired or pained.
But my hesitation also stems from the fact that walking isn’t a feasible mode of transportation in Miami. With everything so spread out across the city, a car is necessary. While I do not own a car of my own, I often have access to my family’s cars (if I do not, then I either take public transportation or use a transportation app like Lyft). I only require my right leg and arm to drive. As such, it’s relatively easy for me to navigate the cityscape.
As I grow older and travel more, however, I am continuously confronted with the reality that I am an embodied being. That isn’t to say that my life can be reduced to or encapsulated by my embodiment. Rather, I mean that I am not merely “piloting” or inhabiting this body. To move through this world and live my life in at as a human being, I must do so in, through, and as my body each and every day that I am alive.
The surgery did not disable my body — at least not in the more permanent state I am now. Rather, the swelling and scar tissue debilitated the muscles and tendons in my limbs, rendering them susceptible to lasting impairment. It was Signa’s refusal to cover the expense of continued physical and occupational therapy that congealed that debility into a disability: my limp, my chronic susceptibility to pain in my left ankle, and the hardening of the tendons.
I began this paper with my own experiences not to posit them as emblematic or representative of the disabled experience, but to counter the violence of abstraction. In other words, I have shared my stories and circumstances to provide them as an example of my own, embodied, and thus everyday experiences with disability and debility. In doing so, I hope to have illustrated some of what is at stake for me and people like me in a way that statistic and debates about policy cannot.
This shift was precipitated by another, rapidly approaching reality: I will be moving away in a few short months…and it is the more challenging layout of my soon-to-be new home that has me revisiting my thinking in relation to disability.
While Ithaca, NY was originally founded on flatland, the town ultimately expanded up a few adjacent hillsides. Cornell University, for example, was built atop one such hill. When I visited the campus earlier this year, I was immediately struck by how challenging it was to navigate. The apartment complex where I was staying is located at the bottom of the hill relative to the university, so making my way up and down the hill became a daily, taxing trek — especially in the snow. Several of the town’s older buildings, including said apartment complex, lack an elevator. As such, I had to climb a few flights of stairs when I returned each evening.
In Ithaca, I feel more disabled than I ever have in Miami. Still, on internalized instinct, I look to others and ask myself: if Ithaca feels so inaccessible for me, a relatively mobile person, then how inaccessible must it be for people who are more limited in their mobility?
When embodied disabilities intersect with physical space, the question of accessibility arises. The concept of accessibility refers to both direct (or unassisted) access and indirect access, which denotes a space’s compatibility with assistive technology (such as mobility aids like walkers, wheelchairs, and so on). As such, accessibility underscores a structural, systemic intentionality in that the architects or owners of a space must consciously account for disabled persons.
Both labor and capital are required to plan and build more accessible spaces. But in the event of an institutional oversight, the cost is unevenly distributed so that the disabled person or their caregivers must invest more effort or money of their own. For example, consider a disabled person who relies on a wheelchair to navigate the world. According to the Americans with Disabilities Act Accessibility Guidelines, a standard wheelchair ramp should have an incline no steeper than 1:12, which means that a ramp must distribute each inch of “rise” over 12 inches of “run,” or length. But in hilly, older spaces like Ithaca, whose initial construction predates the American with Disabilities Act by nearly two centuries, the inclines are significantly steeper.
To navigate this space, then, a person who is wheelchair-enabled might have to incur a daily expense to hire a (wheelchair-accessible) car to drive them to and from their workplace, the market, school, and so on. Moreover, in selecting a home to rent or lease, this person may have to pay extra to live in a more “modern,” accessible building with ramps and elevators. Both scenarios are just two of the daily considerations this person who is wheelchair-enabled must always keep in mind, and yet each is already rather time-consuming and costly.
Therefore, it’s not that — to return to my own example — I am or will be “more” disabled in Ithaca than I am here in Miami. Rather, it’s more accurate to say that Ithaca’s relative inaccessibility has forced me to confront and reassess my body’s limitations once again.
It is crucial to note two things here. First, that there is a comparative material aspect at play. That is, as with the situation which involves travel between home and workplace, an able-bodied person navigating the same space will have an easier time or expend less money than a disabled person in doing so. For instance, an able-bodied person may elect to save money by renting out an older, more inconveniently-located apartment; however, that choice is impossible for the person who is wheelchair-enabled and requires ramps and elevators to merely access that space. What’s more is that, for the person with disabilities, any expense saved by renting an apartment that is more inconveniently-located may be negated or exceeded by the daily cost and effort of traveling further to and from their workplace. This is not true for an able-bodied person, who may walk or bike the same distance to cut costs.
Our second consideration is that while these efforts and expenses may seem “extra” to able-bodied people, they are actually basic, everyday, and necessary for the disabled person who simply needs to get to work to earn a living or make it to the market to buy groceries and other basic necessities. At bottom, this consideration effectively inflates disabled people’s cost-of-living, which means that while the same income may be a “living wage” for an able-bodied person, that income goes significantly less further for a disabled person. Of course, this consideration doesn’t factor in real considerations like the disabled pay gap, which, according to the American Institutes for Research, was at an average of 37% in 2014. In other words, the reality in the United States is often that disabled people are forced to make do with less.
What are our sociopolitical recourses? First, to work on eliminating the disabled pay gap by pressuring legislators to introduce legislation that builds on and expands the Americans with Disabilities Act of the 1990s.
Second and perhaps more immediately, to pressure our local institutions to become more directly and indirectly accessible. As assistive technology improves, so too must our institutions. While doing so will require labor and capital, it will also ultimately save disabled persons a significant amount of time, effort, and money.
Third, to protect the gains made by the Affordable Care Act vis-à-vis preexisting conditions and the elimination of maximum contributions. However, it also behooves us to continue pressuring our legislators to expand upon the ACA to reduce premiums and deductibles to make healthcare more affordable and accessible. As in my case, some disabilities are, if not preventable, treatable and diminishable. The rather brutal, bare minimum decision which Signa handed down to me as a debilitated child recovering from brain surgery still affects me today, long after my scar has healed. It likely will continue to affect me by limiting my mobility even more severely in the future. By revising and improving our healthcare system, cases like mine can be handled better.
In the interim, what we need most is disability rights and disability pride. The impulse that for years has cowed me and others like me into remaining quiet is an unproductive one. That is, disabled people have a right to the world; accessibility and accommodations are not demands or impositions on the other, but the condition of possibility for our inclusion in the world. There should be no shame in claiming it.