When Resiliency Runs Out
What happens when you can’t outrun your illnesses anymore?
By Elysa Caso-McHugh
On a walking tour of Morningside Heights led by my NSOP orientation leader, our group briefly ducked into the Duane Reade on 111th Street. While my NSOP group milled through the colorful aisles, I found myself downstairs at the pharmacy desk placing an order with a pharmacist for medication—the mood stabilizer I needed to keep the worst of my bipolar disorder at bay. When she announced the price, I broke into a cold sweat, claustrophobic beneath the suddenly blinding fluorescent lighting. I had little money to my name and no job in sight, and quickly realized I had to make a decision: pay for my medication with money I didn’t have or politely decline and experience withdrawal symptoms in my first semester. My stomach dropped. I shook my head, stepped away from the counter, and walked back up to rejoin my orientation group.
After a mania that electrified my first few weeks in New York City, I plummeted to the depths of a depression I had not experienced since my initial diagnosis. That first semester at Barnard was hellish. I spent those months doing everything in my power to get to class, to nourish myself, to accomplish even the simplest tasks. My roommate’s friends would come to our room on Friday and Saturday evenings to primp and chat before leaving for revelrous nights of dancing and bar-hopping. I remember noticing how much I wanted to shrink into myself while I watched from my side of the room. I couldn’t imagine ever having the energy to do that.
As I watched other first-years skip off into the night, I would make my way slowly and painfully from the Quad to the Diana Center for dinner. I often arrived just before the Café closed, stalled by the agony of bringing myself to get something to eat. After spending hours in my room immobilized and depressed, it felt miraculous to be standing in the emptied dining hall, washed with the cutting scent of cleaning fluid on soap-glossed metal mixed with the aromas wafting from each food station: kale and frozen strawberries, pinto beans and iceberg lettuce, chicken noodle soup and individually wrapped saltine crackers. Silence hung heavy in the air. Everyone working was counting down the minutes until their shift was over. As I rushed to pick up my dinner, I, too, was silent.
When unplanned encounters with friends inevitably broke my silence, I found myself on the brink of collapse. Once, after a friend asked me how I was in JJ’s Place, I burst into tears. Back then, I had no community of support, no clear pathway to access therapy, no real understanding of CARDS, no means of obtaining the medication I needed. Attending classes and turning in my work seemed impossible—especially when my peers seemed to be excelling. I felt judged for not doing as well as other students, no matter how taxing the struggle just to keep my head above water.
That is one big issue with being disabled. There is so much guilt and shame over the things your body cannot do—as if you have a choice in the matter. What able-bodied people don’t understand is that if I could, I would. But when you have never lived with a barrier on your capabilities, it is, I’m sure, difficult to imagine what it must be like to live with one, let alone many. This year, I discovered that I have ADHD and autism alongside my bipolar disorder and Complex-PTSD, and began to experience chronic migraines and worsening chronic pain that is typically comorbid with my other mental illnesses.
After stumbling upon a bulletin board in the underground walkway between Milstein Library and Hewitt Dining Hall towards the end of my first semester, I realized students with mood disorders could receive accommodations through CARDS. I stared at the board, dumbstruck. Near the end of my first semester at a town hall hosted by the health and wellness center addressing accessibility and wellness, I tearfully recounted my experience. I explained how I felt stranded and alone, unable to get better despite the school’s promise that I, as a disabled student, would be taken care of. I demanded better.
I remember the anger burning in me as I learned at the same event, after months of forgoing medication to avoid the financial burden, that Barnard had an on-campus psychiatrist. I was unaware of so much of the information I desperately needed in order to be properly accommodated. I had spent an entire semester struggling, with no idea if it would ever get better, before I learned about resources I should have been aware of from my first orientation event. Despite learning over time how to navigate Barnard as a disabled student, I still wasn’t able to get the attendance accommodation I needed until my second semester, leaving me with poorer grades caused by depression that was wildly out of my control. And while now, in my fourth semester, I have finally found a steady therapist, my health issues continue to debilitate me in many aspects of my life, including academically.
Why am I, and people with similar disabilities, made to feel guilty for the ways our bodies fail us? Why aren’t we met with compassion and understanding instead? It is my reality at all times to be disabled. In order to finish schoolwork, I have to constantly push through my pain—pain that able-bodied people cannot conceive of. Yet somehow, I am seen as unworthy of empathy and care because it won’t go away, I won’t get better—not for a long time, anyway, for some illnesses, and for others, not ever. It’s as if compassion stops at “get well soon”; when that doesn’t apply, nothing does.
It has taken me a long time to try and stop feeling guilty for struggling, for being unable to always persevere. Before attending Barnard, I ignored my pain and my depression in order to excel. It was how I got in. I come from a background of abuse, poverty, and generational trauma, and have lost so much of my own cultural history and family to systemic oppression. It felt like my duty to break that cycle of poverty and trauma that my predecessors, including my disabled parents and grandparents, had not been able to. I felt like I needed to continue pushing through these debilitating illnesses to do so—illnesses that left me incapable of doing what I felt I needed to do to fulfill that duty.
I have tried to outrun my disabilities my entire life because I know the implications of giving in and resting, but it is only possible to outrun your body for so long. Every time I read a story about a disabled person who “rose above”—known as inspiration porn—it makes my stomach turn. The Able South Carolina Center For Independent Living’s page describing the phenomenon reads: “Inspiration porn, a term coined by the late disability activist, Stella Young, refers to the objectification of people with disabilities in media, which serves the purpose of making the consumers, people without disabilities, feel good.” Stories like, “Tommy Tiernan viewers praise ‘inspiring’ Sinead Kane for opening up on being bullied over visual impairment,” or “Guy Asks Girl With Down Syndrome To Prom In Cute Video.”
It is insulting and demeaning to be surprised and inspired that disabled people are able to accomplish what able-bodied people can when we live in a world where disabled people are getting killed, becoming homeless, losing jobs, having to drop out of school—are at risk of losing everything when unable to meet the standards put in place by an able-bodied person. I’ve spent my entire life in a body, and a mind, that people see as different, as strange, as asking for too much. I know exactly how it feels to be this inspiration to other people. Many people have complimented me on my “resiliency,” even given me awards for it. Each time I receive a sweetly condescending smile after disclosing my disabilities, or have someone ask me, “How did you make it to where you are now with all these things?”, it stings. We have to persevere. What other choice do we have?
Spending my life being disabled has taught me to view the world from a distinct perspective. Non-disabled people often only want to hear about disabled people when we are entertaining them. In the recent film adaptation of Roald Dahl’s Witches, for example, the witches’ hand deformities were included as a villainizing plot device. News stories focus on disabled Olympians, acclaimed authors, Nobel Prize winners. They use us as pawns in their high-profile (not to mention profitable) stories, assuaging their concerns as they fail to help the rest of us.
In my life, I know that I am that aspirational person to many people, unaffected by my disabilities. People expect me to erase my past as though it were written with a dry erase marker on a white board. In reality, it often feels like my past is permanent, registered in Sharpie, even etched in stone. Inescapable. Ironically, in order to excel—or even just survive—Columbia requires that I continue scrubbing at the writing of my past, as if to wash my disabilities away, or at least pretend they don’t exist. And yet, no matter how much willpower I muster, how many pleading visits with doctors to see if there is any treatment method to put my symptoms at bay, I cannot seem to get better. It is not for lack of trying. It is never for lack of trying. It has never been for lack of trying.
Yet people will immediately assume that it is. When I am in need of the same accommodations, or more Incompletes, every semester, the guilt washes over me. I feel as though I am somehow an imposition, still asking for too much. This is a fear I will always carry with me, especially after so many years of individuals and institutions treating my request for basic respect and treatment as just that—an imposition, a bit too much. I wish to be seen as worth more than my resiliency, but it often seems like this school values me based on how hard I can fight against the laws of my own body to perform academically. While I have been lucky enough to have some supporters at this school advocating for me, these supporters are themselves battling against an institution with outdated and inadequate support. Despite the fact that I cannot change the nature of my disabilities, I am expected to do so to suit a school that could easily put in some extra effort to create more accommodating and accessible policies—and still refuses.
I have spent most of my time at Columbia struggling in silence—hoping and praying that as few people as possible catch on. If I am seen as weak, I am met with disdain where I should be met with care. If two years at this school have taught me anything, it is that this world will never be kind to those who cannot outperform themselves at the expense of everything that makes their body human. It feels as though my only choice is to suffer or perish. Like that Barnard first-year agonizing beneath the harsh white lights in the basement of Duane Reade, I see little choice between these two extremes.