Katherine Hill is a second-year journalism major and writes “Cerebral Thinking” for the Daily News. Her views do not necessarily reflect those of the newspaper.
When my alarm clock goes off in the morning, I am hit with a wave of emotions regarding what it means to be disabled, especially on the mornings when physical aches linger longer than others. Eventually, those complex feelings morph into one: the selfish relief of not being handicapped.
There is a subtle—but fundamental—difference between the two words, as I still have the use of my legs. Knowing the difference is how I find the strength to get out of bed in the morning. It reminds me in spite of everything, my situation could be worse. I am not bound to a wheelchair or dependent on a mobility device. The closest I’ve come was wearing leg braces until age 17.
A morning may look something like this Tuesday in February:
Upon getting out of bed, I grabbed the edge of the mattress seconds later, feeling the stiff winter chill in the air. Pulling open the window shade, I sighed, as it unveiled an opaque white sky and frosted sidewalks. I was anticipating how soon it would be until my next fall of the week. The answer was 20 minutes.
While getting dressed that morning, I tripped over my slipper and into my bedside metal bookcase, bringing it down with me. I grabbed it, shook it and began throwing every book, cough drop and marker inside. “It’s okay, it’s okay,” my roommate tried to console me. “Calm down,” she said. Looking out at the mess I made, I could feel so much, but said nothing as quiet rage became audible sobs of internal disappointment.
It was 8:41 a.m. I had class at 9:30.
The disabled existence is fighting to keep your pride, only to snap one day with none left. I have been fighting my whole life.
I was born two months prematurely. At just a few months old, doctors diagnosed me with Failure to Thrive- a diagnosis given to as few as 10% of babies, according to UT Southwestern Medical Center. I wasn’t gaining weight or hitting milestones like I was supposed to.
They kept a close eye on me, and by age two, the tax fee of my “express delivery” was officially declared Congenital Diplegia Cerebral Palsy.
Those four words, “congenital” meaning “born with,” “diplegia” meaning “affecting both sides of the body” and “cerebral palsy,” a movement disorder stemming from the brain that affects one’s coordination and ability to balance themselves, have shaped my existence. The proper medical diagnosis was rarely what peers around me said growing up. Other labels, including IEP, 504 and “Zombie Girl” plagued school halls, teacher conferences and whispers among peers.
As time goes on and labels continue to surround me, none sting more than my first: Failure.
The disabled existence is a breeding ground for self-imposed labels.
Last summer, my TikTok algorithm must have known I was moving away to college. My For You Page on the social media platform was filled with eldest daughters expressing guilt for leaving their younger siblings behind in a home that would never be the same. The algorithm also taught me new terminology: Glass Child Syndrome.
In December 2010, public speaker Alicia Maples defined a glass child in her Tedx Talk as, “A healthy kid with a special needs sibling.” Maples explained parents of glass children are so consumed with meeting the needs of the disabled sibling, they look right through the other(s), as though they’re made of glass.
The discovery of this term riddled me with guilt and continues to be the hardest pill I’ve had to swallow in my life. It conflicts with my existence as an older sister by making me feel more like a burden than an allied sibling as my younger brother continues to surpass and succeed me.
The transition period to adulthood following my 18th birthday was the most convoluted time of my present-day life. I learned very quickly there is a staunch difference between a disabled child and a disabled adult in American society: a disabled child is a miracle; a disabled adult is pitied upon.
Americans find it easier to give pity than acceptance, especially when it comes to adults with disabilities.
Throughout childhood, I, like so many other disabled children, was told not to be defined by any limits, so I wasn’t. But, when I became an adult, the system defined what it meant to be disabled. Thus, the federal and state programs that once supported me and so many others (Medicaid, Social Security, Vocational Rehabilitation, etc), became the very thing limiting us.
I received a message that I was too successful to be aided by the system any longer, but too disabled to be declared “normal” in society. This was a daunting realization. As much as they tried, it was hard for those closest to me to understand and even harder for me to explain to them.
On June 13, 2024, one week after turning 20, I terminated all income-based healthcare plans and services I had been receiving for the past decade. No more cognitive behavioral therapy sessions, no more Medicaid health insurance and no more appeals to Social Security. It’s hard to jump through loopholes when walking is a challenge.
For me, the decision was liberating. For my mother, it was one she was driven to when sheer exhaustion overtook her concerns for my future. The system is even more broken than the individuals it swears to protect.
In March, I got my first tattoo—a dragon pierced by a fountain pen—above my outer left ankle.
I’ve always loved writing. Growing up with a stutter, it was my preferred way of communicating for the longest time. Writing is powerful. One can say everything without saying anything. This love for communicating a story through written word led to a career of journalism. I feel passionately about telling the stories of those who may not have the means to be heard otherwise.
I started avidly practicing the craft during my junior year of high school. As I continued to grasp the mechanics of journalism, the stakes of my interviewing grew higher. A story is only as good as its interviews—which was the hardest part.
To help me combat onset interview nerves, my newspaper adviser coined the phrase, “Slay the dragon.” Up through my graduation, it became a term of endearment between us and our undying belief in the other’s abilities.
Now in college, the phrase has stuck with me, making its way into the university’s Unified Media Lab to adjourn section meetings and the last thing my roommate and I say to each other before departing for the day.
Standing straight in a full-length mirror, it’s impossible for me not to notice how my left leg curves inward and my knees have permanent discoloration. My legs are the part of my body I am most self-conscious about.
I knew getting a tattoo wouldn’t dissipate the self-conscious thoughts entirely—but it muted them. The day I came home from the appointment was the first time I ever looked into the mirror and thought, “My legs look so pretty.” In the following days, I found nothing wrong with them, only admiring the ferocity-mixed-delicacy of the fineline dragon.
The tattoo is something on my legs as permanent as any scar or bruise discoloration already present from innumerable falls; the difference was I had control over its placement and appearance. The tattoo makes my body feel like mine, when for so long, it felt plagued by cerebral palsy.
People no longer pass by and ask, “What’s wrong with you?”
Instead, they say, “Nice tattoo.”
Having a disability makes it difficult to stay true to another inherent label: my feminine identity.
I have never worn high heels—nor will I ever. Updos do not last long in my hair, as my head sways from side to side when I walk to counteract the scissor-like movement of my legs. As I get older, reality reminds me I am about a decade away from the age of childbearing—the ultimate declaration of femininity—as proclaimed by society.
I should not have children. It’s not that I don’t want children, necessarily, or that I can’t have them. Cerebral palsy has no impact on fertility. I Googled it during a 2 a.m. rabbit hole. It is simply that I cannot emotionally handle the exhausting task of spending even more of my life having to explain why I am the way I am or compensating for it.
It’s been said to me that if I did have children, it would be the ideal way to educate about disability, and I am a firm believer in the idea that a less ignorant population is created when underrepresented groups are the ones teaching about underrepresented groups.
Yet, selfishly, I’m running out of energy to explain to anyone—even if they were my own kids—why I walk the way I do. I’ve reached the age where I feel entitled to the glory of my story.
Society still believes that childbearing has one “correct” outcome: a healthy baby. But, realistically, there are a million possibilities for “failure”: miscarriage, stillbirth and producing children with a wide variety of life-altering imperfections. I don’t know how badly I want to gamble. I first have to mend the relationship with my body before I can think about creating another.
For women with disabilities, having a baby isn’t as simple as fulfilling the lifelong dream most girls have of being a mother, it’s the feeling your body is finally doing something right.
TikTok cerebral palsy influencer Kiaira Barker, shared in November 2023, halfway through her first pregnancy, “I’ve always felt like my body does nothing but let me down, years of constant hatred for it. But in reality, it’s doing the hardest job of creating life, and I haven’t ever been so grateful.” This resonated with me.
If the pregnancy fails, or rather, when it does—she is back to feeling like a failure, with a body working against her in every aspect of life. Disability advocate Alexandra Ayaub took to Instagram in February after suffering a first-trimester miscarriage in November 2023. She shared a passage from her journal, in which she wrote, “My body is a traitor.”
This idea of my body being “a traitor” is the last thing I think about before going to bed. In the dark stillness of night, my mind grows wistful for something I haven’t had—and my stomach feels hollow in my palms.
Before children, there is marriage. I think about this often, too, especially when it comes to ceremonial procedures like walking down the aisle. A consequence of yet another self-imposed label brought on by the disabled existence is I tend to wonder if whoever marries me will be sacrificing happiness to be only content with me. I don’t want that. The thing I fear most in any romantic relationship is the day when loving me becomes caring for me. I am not an invalid.
In my first year of college, I had to take a language course and took French—as a joke—greeting my roommate in a boisterous Julia Child voice. I unironically became good at French, as was reflected by my first test grade, and I cared enough to upkeep it. By the end of my first semester, I was seriously considering work as a French correspondent.
In November, I received word of a travel writing study abroad course offered by the university. I fulfilled all the application work, thinking that if I managed to make it abroad, the trip would serve as the ideal litmus test for my hopeful future career. By February, I was among the lucky 10 students going to France, Italy and Slovenia in summer 2024.
Watching the Eiffel Tower twinkle at the top of the 10 o’clock hour was a core memory. However, a memory of equal weight was waking up the following morning, the third day of the five-week trip, in the worst physical pain of my life.
Color drained from my face and reappeared in my plum-bruised knees. I knew then the litmus test failed because my body failed me yet again. The worst part was I was angry with it but didn’t want to be, as the paralyzing pain was proof my body was trying its hardest.
The frustration lingered through the remainder of the trip, but it was mitigated, as I found the reaction to my falls to be culturally different. Americans are very prideful, a trait stemming from our puritanical roots.
When I fall in my hometown, I get up as fast as I can and pray no one sees. As a result, people spare me embarrassment and pretend not to see. When I fell in Europe, I was immediately swarmed by people with outstretched arms, cursing the loose cobblestone or storm drain that threatened my vitality.
I wonder if the Italian grandmother who gave me a forehead kiss and curbside baby wipes to clean my bloody knees knows what an impact she made.
The Americans with Disabilities Act of 1990 (ADA) is uniquely American. Such standards of upkeep sidewalks and ramps don’t exist outside of this country. Conversely, Europe’s cobblestones are a testament to the history of the continent and its Romanian roots, wrote Monarch Stone International’s Lisa Van Liefde. It’s a display of what is kept unchanged and remains “normal.”
For me, the cobblestones were more so a stark reminder that disabled individuals, while ever-present, have been shunned from history and crammed into institutions, hidden from the world around them. I mulled over that thought for a while, finding solace in the strength that comes from creating one’s own history.
Since returning home, I have found it difficult to navigate my place in the world with a newfound sense of it. I obtained my driver’s license in September 2021 without any modifications, but I don’t drive regularly. One car accident and invasive commentary from a police officer gave my loved ones enough reason to believe I couldn’t drive.
What was once my magnum opus became a catalyst for ceaseless trauma and numbing feelings of inadequacy.
An added perk of correspondence work is air travel, which seems ideal, but the fact is, if I stay here in America, I am constantly reminded how worthless I am without a car. In Europe, I’d have to walk everywhere, neither one of which, driving or walking, I can do well.
I loved the trip, but I’m unsure if I loved it enough to travel consistently. There is no greater pain than having a soul that would go anywhere, a body that can’t and a mind that is often too prideful to bridge the two. Of those, the one that can be adjusted is my mind. Adaptations are not weaknesses.
There is no solution, only realization, as comes with growth.
A friend I’ve known since elementary school was walking with me to the dining hall one November evening while we finished an in-depth conversation about our futures. Upon stepping out of the elevator, she paused before saying to me, “You have a very niche existence.” I could read between the lines and the wrinkles in her forehead. The subtext was, “I don’t know how to help you, but I love you.”
She was right. The disabled existence is a niche existence—one that is equally as powerful as it is isolating. There are perks to being disabled, including Disney’s Disability FastPass, a high metabolism and the parking, which when I got to college, became my (self-proclaimed) “rizz.” The college environment has allowed me to learn the difference between being disabled and stupid versus young and stupid—a distinction that has been unequivocally freeing.
I became acquainted with Disability Pride Month two years ago while simultaneously following more disability advocates, activists and influencers across social media. The month seemed, at first, like the greatest form of irony. “How can I take pride in something I spend every other month of the year suppressing?” I asked myself. I felt immediate and inexplicable shame at the truth the answer revealed: I shouldn’t be suppressing my disability.
It wasn’t until recently I realized the versatile meaning of “pride,” just as disability is a spectrum. Having pride in something does not have to have a joyous connotation, but neither should it be about harping on the negative. Pride is acknowledgement of the good and bad realities of circumstances that cultivate one’s identity.
I do not get to choose the body in which I live, but I do have a choice to love the body in which I live.
Happy Disability Pride Month!
Contact Katherine Hill with comments at katherine.hill@bsu.edu .
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