Education in Absentia

        I’m in the principal’s office of my middle school, sitting uncomfortably in a scratchy upholstered chair that’s littered with old coffee stains, waiting for my name to be called. I’m drumming my fingers against the metal arms of the chair, bouncing my leg up and down on the carpet, fidgeting with the seam of my sweatshirt. I’ve never had a detention. In fact, I’ve never done anything to warrant a detention. I keep my head down, do my work, never talk back to a teacher, and actively avoid involving myself in anything remotely risky. I don’t belong here, and it’s clear that I don’t know how to act in this situation. Yet, in the middle of history class, a phone call came, specifically summoning me here. The only possible explanation that I can come up with is that someone is hurt, or worse, dead, and this meeting is a way to break the news to me. I catalogue my loved ones in my head: Is it Nana? Auntie? Mom? Dad? My sister?

        Just as my mind begins to devolve into a downward spiral of panic, the wooden door cracks open. My vice principal, Ms. Walsh, steps into the doorway, gesturing me into her office. 

        I’ve never spoken to Ms. Walsh before, but I recognize her. She spends the lunch periods going from table to table, asking students about their classes and extracurriculars. I’ve often seen a flash of blonde hair and patterned fabric zipping around the cafeteria, moving with purpose, whether to make small talk or bust a student on their cellphone. She’s popped into my theatre class a few times—a course that all seventh graders are required to take—but she just stands at the back of the auditorium, silently watching and overdramatically pantomiming her praise.

        “Annalisa Morganelli? You can come in now,” she smiles softly at me, like this is normal, like we’ve had this interaction a thousand times and everything is fine. My hands are clamming up and my heart is beating so loudly that I can barely hear her speak. 

        As I enter her office, my vice principal sinks into her cushioned seat and methodically adjusts a stack of freshly-printed paper. She plucks a red pen from a vibrantly painted ceramic cup, draws circles around some of the text near the bottom of the first page, and then slides the sheet towards me.

        “See this number?” she says, tapping her pen against the paper. “This is how many times you’ve been absent just this year. Could you explain the reason for these absences?”

        My feeling of dread is instantly replaced by a heavy feeling of discomfort. Everyone is alive, but I know where this is going.

        “Um, yeah, okay. I’m a type one diabetic and sometimes my blood sugars can make me feel sick which keeps me up all night,” I explain, hearing my voice crack a little as my throat goes bone-dry.

        “Right,” she gives me her soft smile again, “I understand that. But there are other kids with diabetes who don’t miss nearly as much school as you do.”

        I’m not quite sure how to respond to this. In an alternate universe, perhaps I have some steely grit where I stand up for myself and explain that diabetes isn’t one size fits all. Diabetes is notoriously finicky; when I was little, my mom used to explain my condition to those who had no experience with chronic illness by telling them it was like nailing Jell-O to a tree. While diabetics may experience the same broad situations, the illness is so complicated that comparison is futile. There are too many variables, too many uncontrollable factors, that can affect someone’s life. 

        Maybe in another universe beyond that one, I say something else that would really get me a detention. But in this universe, I concede.

        “I know,” I say, mirroring that smile. “I’m sorry.”

        She nods her head gently. I can tell she thinks she’s done her job adequately and solved the issue by pulling this apology out of me, like I’ve finally atoned for the mortal sin of missing more school than she deems appropriate. 

        “Well, okay. We just don’t want you to miss too much class, right? It’s really important for you to have that in-class instructional time. So, if there’s ever a day where your diabetes isn’t that bad, just try to come in, okay?” Ms. Walsh tells me as she scribbles her signature onto a small green excusal slip that I am to give to my history teacher when I get back to class. 

        She stands and guides me back to the door. As I walk down the hall, it is not lost on me that I’ve missed over twenty minutes of class to be told that it is my fault for missing too much class. 

. . .

        By the middle of my seventh grade year, my school had not let up on my inadequate the principals continued to call me down to the office to discuss how my diabetes should not be impairing my ability to come to school. To this day, I’m not sure if they ever bothered to read my paperwork before scolding me. If they had, they would have known that I was supposed to be allowed to go to the bathroom at any time, head to the nurse’s office as needed, and eat and drink in the classroom. Most importantly, they would’ve known that diabetes-related absences were inevitable, and should not only be excused but also accommodated. It could be that they read my file, and just decided that the doctor’s words didn’t matter, and they knew best about what I needed. 

        Interspersed between these office visits, we received threatening letters from the superintendent’s office. They were clear warnings, written in absolutes: if my parents did not ensure that I didn’t miss any more school, the truancy officer would be making a visit to my house. It was stark and unforgiving—they were making it obvious that they were ready to punish me for not coming to school because of my diabetes. Worst of all, these letters implied that my parents, who always stayed up with my all night battling the fallout of a broken insulin pump, were failing me. 

        “Let him come,” my mom would say to comfort me when one of these routine letters made its way into our mailbox. “I’ll make him a cup of tea and we’ll have a nice talk.”

        They never sent one, but I was always waiting for it to finally happen. I imagined that one day, I’d hear a heavy-handed knock reverberate through the house, and then see an officer through the glass panes of our front door. I feared that my verbal warnings would finally manifest into a physical punishment, not only for me but for my parents. I had no clue what the punishment would actually entail if it were to actually happen. Would they get a verbal warning? Maybe a fine of some sort? Or, the worst of all, was getting arrested a plausible possibility? The thought of it tied hard knots in my stomach. 

        While I felt beaten down into silence by these encounters, my parents maintained their status as my biggest advocates. After my second office visit that year, they called and demanded that it was time for the principal to have a meeting with them. They operated as an undefeatable team. My mom is the social butterfly, an extrovert to her very core, who can find connection with anyone that she meets. My dad is the analyst, quiet but always listening, known for making a spreadsheet for any and every situation that should arise in our lives. They invited each of my teachers—science, history, English, and math—and ensured that the nurses would be in attendance. My dad printed out copies of every piece of paperwork related to my diabetes and filed them into a crisp manila folder. 

        When they arrived, everyone was crammed into a semi-circle around the same wooden desk I had been sitting in front of not even a full week before. 

        “Mr. and Mrs. Morganelli, you have to understand that grades suffer when students miss as much school as Annalisa does,” Ms. Walsh told them, signaling a manufactured empathy through her eyes. 

        “Show us her grades then,” my mom challenged, already anticipating what was to come, while my dad exhibited his stoic support. 

        Ms. Walsh instructed my teachers to tell my parents my current grade in each of their classes. Their answers came in rapid succession. 

        English: A+. History: A. Science: A. Math: C+. 

        My parents later told me that Ms. Walsh seemed a bit flustered by this report. Apparently, she had never cared to check my grades before warning me that I would be on the verge of failing.

        “But look,” she said to them. “She has a C+ in math.”

        “Annie always has a C+ in math, which has nothing to do with her attendance,” my parents replied. “I think this meeting is over now.”

. . .

        I’ve always fixated on academic success. In elementary school, I’d eagerly rip open my report cards before I got home, not to cover up poor grades but rather to gaze proudly at the columns of “E” for excellent. In middle and high school, I pursued excellence through numbers—anything less than a 90 felt like an abject failure. Admittedly, my downfall was math class; it was a dizzying performance of equations and variables that I could never seem to get just right. From math book problems to blood sugars to my weight to absences, numbers had a unique tendency to rule my life. Even still, I stayed after school for extra help, got a math tutor, and spent hours sitting at the dining room table with my dad while he tried to explain how I could solve each problem. I tried, and tried, and tried. 

        My work often paid off. Excluding math class, I got the grades I wanted, a sweet resolution that fed my anxiety-induced perfectionism. My drive didn’t go unnoticed, and I was named as student of the month during my sophomore year of high school, thanks to a glowing nomination from my favorite English teacher. 

        Even so, I never quite felt like a good student. 

        Good students didn’t miss as much school as I did. Good students didn’t have a pile of late slips in their locker for the times that their bodies were so exhausted that they couldn’t pull themselves out of bed to get to first period. Good students weren’t called down to the office to discuss how much class time they missed. Good students didn’t have a hefty packet of makeup work to do after a particularly difficult week. 

        The acceptable definition of a “good student” was simply not compatible with my existence. I felt that any shred of success that I had was automatically undercut and erased by the days that I stayed home. The administration at my middle and high school treated attendance as the crux of all academic achievement. They refused to account for my continuous effort or the extra time that I put in to stay on top of all my work. If someone isn’t able to fulfill their cookie-cutter expectations of success, even with “impressive” grades, then it must mean that they are a failure in the school system.

        Upon reflection of my own experiences, I’ve started to think of the other students with chronic illness and disability who have been punished for their personal requirements for success. In November of 2021, a hearing and visually impaired graduate student at American University was denied an in-person transcriber, despite the fact that her automatic transcription technology wasn’t functional. Each week, she was attending two and a half hour lectures that she was not able to learn anything from. Another student at Stanford University who has POTS and chronic fatigue syndrome was left in an impossible situation when the 8,100 acre campus’s golf-cart service for disabled students was no longer an option for them due to increased demand. As a result, the student was forced to miss classes in order to protect his well-being What happens to students like them when they are told that they will never experience success like their abled peers? What happens to the students who are set up to fail from the moment they enter a school system? What truly makes a so-called “good student”; is there even such a thing?

        Despite how I feel now, back then I felt that I could be chronically ill or the good student that my school system wanted. That decision had already been made for me.   

. . .

        My punishments extended beyond the principal’s office and into the classroom. My peers couldn’t seem to grasp why I wasn’t there, were never taught about was keeping me home while they were spending ample time in class. They acted like my nonattendance was an orchestrated rebellion, like I was playing an interminable game of hooky. What they failed to understand was that I wanted to be in class. On those mornings where I was still recovering from an insulin pump failure or depleted from stubborn low blood sugars, anxiety would build up in my chest until I felt like it was caving in entirely. It wasn’t missing the day itself that made me feel dizzy, but rather the day after. 

        The day after being absent was always the worst. There was always someone who would say something about me not having been in class. Sometimes, it felt strangely comforting, like people noticed when I was gone and were eagerly awaiting my return. Other times, it felt like I was on trial, and the jury of my peers was speaking their mind. 

        Once, when I returned to school after having a virus that made my blood sugars skyrocket, a casual friend greeted me when I entered the classroom. We had two or three classes a day together, and our desks were positioned adjacent together in all of them, so my absences were typically on her radar. She was someone who I considered to be a “school friend”; we could talk for hours in the halls, but we rarely communicated at all once the bell signaled that the day was over. 

        “Annie, you’re back,” she said to me, as more of an observation than anything else. She examined the chips her crackle nail polish, jingled the row of Alex and Ani bracelets on her arm while she adjusted a lock of her deep brown hair, and started lightly doodling hearts and swirls in the empty margins of her agenda book. Looking back up at me intently with furrowed brows, she said, “I feel like you miss so much school. How are you ever going to make it in college?” 

        I don’t remember what I said back to her. Maybe it was a noncommittal shrug, or an abridged story to defend myself, or a laugh so that I could feel like what she said didn’t matter. I knew she meant no ill intent—she was someone whose parents didn’t allow her to miss school unless she had thrown up that morning. She genuinely wanted to know how someone like me could miss school more than the average person and still succeed when the stakes are raised. 

        Still, that question stuck with me. I hadn’t thought about college at this point, I was only a freshman in high school, but something deep within me wondered if my classmate was right. If my high school could barely accommodate my needs, how would I ever be able to be a successful college student? What if I missed too many classes and received an automatic failure? What if a professor cold-called me, and I had missed the previous lesson, and I was ostracized in front of everyone? 

        My experience with my teachers up to this point in my life was vastly varied. The majority of my teachers were graciously accommodating. One of my teachers was a diabetic herself, and always understood when I had to duck away to check my blood or pop a glucose tablet into my mouth. Another teacher had a diabetic brother, and never minded when I left his class five minutes early to check my blood before lunch so that I would have enough time to eat. 

        But there were also teachers who mastered the art of singling me out. Towards the end of my sixth grade school year, Mrs. Smith, my biology teacher, made a highly coveted deal with my class. Mrs. Smith was a strict and traditional teacher who often mentioned to us that she was one or two years away from retirement. If you ran into class at 7:26am when the class began at 7:25am, you were marked as late without a chance for explanation. If anyone ever dared to forget their textbook in their locker, they were undoubtedly going to receive a detention. Having chewing gum was an offense of the highest degree in Mrs. Smith’s eyes, and she wasn’t afraid to dole out some public shaming for it. During passing periods, she stood with her arms crossed and her feet firmly planted into the ground, scanning the crowds, while other teachers chatted amongst themselves. 

        We knew that this deal was a once in a lifetime moment. She didn’t give her reasoning for it; maybe it was a celebration for us coming to the end of our first year of middle school or maybe it was a celebration for her that she wouldn’t have to deal with us anymore. Regardless, we listened intently: the deal stated that if everyone came to school tomorrow, then she would rearrange her teaching schedule and bring us a box of doughnuts on Friday in place of a lecture. The class exploded into chatter, promising that we’d all be there the next day, looking from student to student and making each other guarantee that they’d show up. That night, I went to sleep dreaming about iridescent rainbow sprinkles and sickeningly-sweet strawberry frosting. 

        The next morning, I woke up and felt my stomach twist. I checked my blood and the screen signaled “HIGH”, meaning that the number was somewhere over 500, too high for the meter to properly read. I checked for ketones, those vicious acids that build up when there is a serious lack of insulin in the bloodstream. They cause a laundry list of symptoms: headache, nausea, exhaustion, all-consuming thirst, and beyond. When left untreated, they cause diabetic ketoacidosis, which can cause serious complications like swelling of the brain or coma. I knew that I had them before the ten-second countdown on the loading screen had even finished. 

        My first thought wasn’t the ever-present concern about the possibility of DKA that most diabetics have. It wasn’t about my aching head, or my dry mouth, or the overwhelming wave of nausea that was washing over me. It was about the doughnuts. I was going to be the absent one; my chronic illness was the reason that the party was off.  It wasn’t just about me anymore, but it had instead become a collective punishment that directly was attributed to my diabetes. 

        That afternoon, while I sipped sugar-free Arctic Blue Gatorade and checked my blood incessantly, someone from my class posted on my Facebook wall. 

        “Truth is: you’re nice, but you didn’t come to school today. So, we don’t get the doughnuts tomorrow.” 

        It made my chest tighten, like all of the oxygen had seeped out of the room in that split second. There was nothing for me to say—it was the truth, wasn’t it? I liked the post and commented back, thanking my classmate, and tacking on a smiley face at the end. At least they said I was nice. 

        When I made my dreaded return the following day, my teacher stood in front of the class and pulled up a PowerPoint about Gregor Mendel’s genetic experiments. There were a few groans in the class as she organized her discussion notes. I tried to sink into my chair, as deep as I could, hoping that maybe I would just melt into the floor and fade away from sight. 

        “We didn’t have perfect attendance yesterday,” Mrs. Smith said to the class. I could feel the eyes around the room drilling into me. Worst of all, I noticed a prolonged glance from Mrs. Smith herself. “So today, we’ll be doing the lecture that I’ve prepared as I originally planned.”

        In my memory, I was the only one who had been absent that day. But, honestly, I’m not sure if I actually was. There might’ve been one or two other kids who missed that day, who were also sinking into their chairs, who also had read Facebook posts on their walls over and over the night before. But my mind has erased that possibility and latched onto the idea that I was entirely to blame.

. . .

        When I first entered college, the words of my old friend weighed me down like an invisible chain around my neck. I wondered if it was only a matter of time before her words rang true, if maybe my diabetes really would hold me back from thriving in my college courses. I scanned each syllabus for the attendance policy, systematically highlighting how many absences each course allowed in fluorescent yellow ink. Some professors allowed three absences, some five, and others didn’t take attendance at all. Instead, it was your responsibility to make sure you were caught up and doing well in the course, whether you were physically in class or not. 

        My head was spinning. My friend was wrong, and so was I. College gave me a different opportunity than I had experienced previously. While middle and high school guilted me, college guided me. For most of my classes, attendance was important but not the be-all-end-all. Beyond that, my schedule had suddenly become flexible. In high school, if I didn’t feel good in the morning and needed to sleep in, I missed nearly the entire day. In college, breaks between classes allow me to rest and do what I need to do for my health while still attending. Because of this accommodation, I rarely—if ever—miss classes now. Being in college has not only allowed me to succeed, but has also given me the chance to revel in my success. 

        But I’m one of the lucky ones. After high school, the accommodations that work for me came along merely because of how colleges classes are structured. For other students, this structure is yet another problem. Some students who experience may struggle with sitting in a classroom for three hour blocks. Other students may find that class time offerings regularly conflict with their necessary doctor’s visits. In terms of the coronavirus pandemic, many chronically ill and disabled students who are immunocompromised have found themselves displaced at their universities as online courses are being removed as an option. As a whole, middle schools, high schools, and colleges alike continue to fail to provide adequate accommodations to their disabled students. 

        There are a wide range of issues that affect different students with different disabilities. In some places, ramps are dilapidated and rendered entirely useless, leaving students with wheelchairs unable to get to class. Many students have spoken up about the lack of ramps in general, rendering the campus inaccessible for them. Elsewhere, automatic door-opening buttons are out-of-order. Maybe braille is inaccurately written outside a classroom, or teachers refuse to provide large-font books, or students are not given extra test-taking time when they need it. Some students need to stim, or fidget, or move around and take breaks. Professors may disallow the use of audiobooks, or assign books that don’t even have an audiobook component, meaning that the student has no way to read the book. Many students are afraid to disclose their situations in the first place due to a palpable lack of understanding; a student at Johns Hopkins shared that her professor told her that her accommodations were unreasonable. Or, like me, students are punished for when they physical health takes precedence over physical time in the classroom. There is so much to be fixed that sometimes it feels like a Sisyphean task. Regardless of the magnitude of changes that need to occur, a school being ill-equipped to accommodate its chronically ill and disabled students is one of the greatest failures of modern academia. 

        Chronically ill and disabled students want—and deserve—to succeed like their fellow classmates. They want to thrive in an academic setting. They want the chance to redefine what we as a society consider “the good student”. If schools and universities start giving them the opportunity to, they will. 

. . .

        Over the past few months, I’ve spent a lot of time thinking about my experiences in the educational system. I’ve told my stories to my friends and family members, sometimes rehashing situations we’ve talked about a million times, and sometimes sharing a splintered memory that I hadn’t even realize had been tucked away in the corner of my mind. I watch as their faces fall, and twist, and distort, bewildered by what I’m telling them. 

        One of these conversations with my mom segued into a thought about my grandfather. His leg was amputated when I was only three years old—all of my conscious memories of him feature his wheelchair, his arms reaching out to greet us in the doorway, and the prosthetic leg that he rarely wore thrown somewhere in the room. I remember him visiting him in the hospital a few days after his operation, clinging to Mom’s side and pulling on Dad’s hand, and listening to him explain it to me in child-like terms, telling me not to be confused or afraid. After becoming disabled, he made the decision to involve himself in advocacy—he spent the next couple of years fighting for disability rights. On the morning that he unexpectedly died in 2011, he was getting ready to attend a meeting to discuss accessibility for wheelchair users on city buses. 

        With age, I have gained a newfound appreciation for my grandfather’s actions. The combination of that and my own personal experiences makes me want to fight harder for chronically ill and disabled students out in the world. I sometimes wonder if sharing my stories could help open doors to change, if perhaps I could somehow assist in making things better for the next group of kids coming through the school system. 

        Sometimes I feel empowered in my desire to advocate because of my experiences at school. Sometimes I’m furious that it happened, that there are so many people suffering in a place that is supposed to nurture and educate, that we even have to advocate for something so intrinsically necessary. I’m not sure of the right path to take, or how to fix such a layered issue, or if I even have the power to do so. 

        I just never want another kid like me to get blamed for not having doughnuts in class.

 

Biographical Note: Annalisa Morganelli is a senior at Bridgewater State University studying English with a concentration in literature. She has been an avid reader and writer for as long as she can remember, and hopes to always live a life surrounded by plenty of books.