Holly Genovese is a Ph.D. student in American Studies at the University of Texas at Austin with portfolios in both Black Studies and Women and Gender Studies. Her work (primarily) focuses on Black cultural and artistic resistance to incarceration in the American South. She was a contributor to Book Riot from 2016-2020 as well as a blogger at the US Society for Intellectual History Blog from 2016-2019. Her academic work has been published by Quaker Studies, The Rapoport Center for Human Rights and Justice Working Paper Series, and Fabric. She has written for Teen Vogue, The Washington Post, The LA Review of Books, Jacobin, The Chronicle of Higher Education, and many other outlets. She has been trained in the nationally recognized Inside Out Prison Exchange Program and is certified in Layperson Naloxone by the Purdue University College of Pharmacy. Follow her on twitter @hollyevanmarie and find her site at https://holly-genovese.com/
I am a Ph.D. student. I am a journalist and cultural critic. I am a partner, a cat mom, a daughter, a sister, an artist. I am also neurodivergent, mentally ill, chronically ill, disabled.
In the last 4 years, I have been diagnosed with the following:
- Social Pragmatic Communication Disorder (almost the spectrum)
- Auditory Processing Disorder
- Major Depressive Disorder
- Persistent Depressive Disorder
- Generalized Anxiety Disorder
- Social Anxiety Disorder
- Panic Disorder
- Sleep Apnea
- Nasal Obstructions
- Developmental Coordination Disorder
- Non Verbal Learning Disability
- Acid Reflux.
- Chronically Unstable Ankles
People tell me that it’s impressive, all that I have accomplished. That I am high functioning. Doctors are shocked, calling testing results “interesting” or “extreme.” How exactly is someone both so smart and so disabled? How did nobody know until I was a graduate student exactly what was apparently “wrong” with me? Professors (at past universities) have told me that maybe graduate school is too hard for me, that working with incarcerated people will be too stressful for someone with my issues. And maybe it’s true. Many autistic people don’t have jobs. And there are no jobs for anyone in academia anyway.
First let me explain a bit about my life. Sometimes I set 5 alarms in the morning, but still don’t wake up. I might be lazy or immature, I’ve been called those things my entire life. But I have insomnia, caused by Sleep Apnea (which is in turn caused by life-long blocked nasal passages) and major depression. I’m late a lot–to class, office hours, bars, hangouts. I do respect my friends, students and teachers but I cannot perceive time (often called time blindness)–a symptom of both my ADHD and being on the spectrum. Some days I have panic attacks–which are often mistaken for major heart problems due to my chronic tachycardia. I was in the ER 12 times last year. The last time my heart rate was so high the woman at the desk told me to sit in front of her in case I passed out or died (175 if you were wondering). “Just” anxiety. Sometimes my panic attacks look like laziness too–as I curl up on the couch, under a blanket, trying to breathe or forget or regain a handle on my life. My panic attacks can be triggered by an endless array of seemingly benign things: a knock on the door, someone walking past my apartment, an email with a vague or scary subject line, someone referring to me by my full name, the shutting of doors and cabinets, thunder, fireworks, school work, too many choices on the TV, grocery shopping, fluorescent lights, or “feeling dusty.” I get hypo-manic and clean the entire apartment when I am stressed out or worried.
Everyday things exhaust me. I love the idea of public transit, of riding the bus, but I almost never leave myself enough time, even if I wake up early, set an alarm to leave the house. If I start an activity, a game, a book, a show—I can’t stop. So I have to sit, staring at the clock, until it’s time to leave but any small distraction means I’m late again. Just like I was late to homeroom every single day of High School, the straight A student who just couldn’t get to school on time, walking in late everyday, without my ID, holding a can of Diet Coke, sneaking in during the pledge.
I tore my ACL in 9th grade ballet and have what the doctor refers to as “chronically unstable ankles.” Sometimes my knee gives out, refusing to pop back in, preventing me from walking or standing. If I stand for more than a little bit, or bend over to pick up a box or laundry, or go for a walk or try to run, my back aches require me to arch and stretch and cover myself with Tiger balm. But creams and topicals and adhesives, including the one that attached my heart monitor, give me rashes and sores and irritate my rosacea.
I cannot perceive information through listening, something called auditory processing disorder. It’s not about my hearing but what my brain does with what I hear. Nothing. I have trouble watching movies, have to read transcripts of podcasts, and make myself take pages and pages of notes to pay attention in seminars. In high school, I retaught myself the entire curriculum via textbook and notes because I couldn’t process anything my teachers said. Long conversations are hard, even if I am deeply interested. My therapist suggested I take notes in everyday conversations, harkening back to the note-cards I made for phone calls with my crush in high school.
At 21, I passed my driving test on the 8th attempt, the hardest test I’ve ever taken. But I still cannot drive. My fine motor skills are in the .01 percentile. I cannot react or control a vehicle. And even if I could, I sit in the car imagining every back spasm, ankle sprain, panic attack, or lack of attention that could cause an accident. I cannot drive.
I lose my keys, phone, glasses, and pen multiple times a day, everyday. Chores with multiple steps are hard for me to process–think laundry or mailing packages. I need a stimulant to get my school work done, but I cannot take most of them because of my Tachycardia. My panic attacks cause severe IBS, which means I sometimes cannot come to school even after the panic has defused. My periods are ordeals: back pain, cramps, soreness and nausea, symptoms that are only slightly relieved with my heating pad, taking a handful of excedrin, covering myself in tiger balm, and sleeping for two days straight.
But I’m smart. I know this, my family knows this. It’s the reason that I could reteach myself my high school curriculum, why I have managed to stay in a Ph.D. program despite a list of ailments that beats most centenarians. My GRE, for whatever it’s worth, was in the 98th percentile. I can read a book, any book, in a day. I can recite entire episodes of Gilmore Girls on demand. I am big and unruly in my interests, in my love, in my friendship.
My life–which used to be exhausting, a series of hoops to jump through and triggers to avoid, medicines to manage the symptoms of other medications — has been transformed by online education. This isn’t to romanticize the pandemic or to argue that online education is right for everyone–but to think about the ways it has forced us to imagine new ways of learning, doing, loving.
I’m not late to class anymore. I get notices when my students arrive at office hours. Being safely ensconced in my home–I have far fewer panic attacks. My stomach is not as upset, I am not sick every single day. The ordeal of my commute–the attempts to leave on time, the inevitable failure, the guilt, the Lyft ride–have been replaced by time to listen to music or put on fresh lipstick. I can read subtitles in lectures, learn from my home, practice listening while taking notes everyday. I can join teachers and students from across the country, go to therapy in my own home, listen to the sermon from my old church. I can pet my cat during class, something I used to imagine while panicking in high school. For the first time in almost two decades, I’m not having a depressive episode. If I forget to eat, I can grab a snack or a meal. I can write letters to friends, make art, and write alone in the middle of the night listening to 90s pop and emo. I can request online appointments with my team of doctors and medical professionals–two therapists, two psychiatrists, a cardiologist, a dermatologist, a PCP, an orthopedic surgeon, an audiologist, a gynecologist, a dentist that treats my Sleep Apnea. Because the appointments are made online, often held online, I remember to go. I don’t have a panic attack about getting there. I don’t have to feel like a burden on my partner. When I go to the doctor (or often, see the doctor from home), I do better at school.
Teaching online is not the horrifying experience I was told to expect, teaching to a group of robots. I am still getting to know my students–through in class discussions, their positionality statements, and their emails about course work. They are getting to know me too, as I sit in my office/living room/cat castle rambling about incarceration and radicalism and maybe sometimes the Vampire Diaries. I have an almost non existent attendance policy, but my students still come to class daily. I allow papers submitted up to two weeks late with no questions asked. I created a folder of mental health resources on canvas. All of my grading is online–there are no grades to lose, no packet of exams stolen from my bag (and thankfully returned). I try to give my students what would have helped me through my first attempt at a Ph.D. But all of this work wouldn’t be possible if I was teaching in person. I would be exhausted by my body, by my mind’s attempts to get to class, to teach, to travel, to go to the doctor. But teaching online has allowed me to thrive, to take comfort in both my abilities and disabilities, in my home and my students.
As a student, it’s making all the difference. Grad seminars are broken up by breaks I choose–when I need to use the restroom, grab snacks, pace around my living room. Of course, in person we can use the restroom–but that doesn’t prevent the 20 minutes I spend trying to figure out the least disturbing way out of the classroom. We can snack–but if it’s smelly or crunchy or bubbly, it’s mostly unwelcome. Like all reminders that we, too, are humans. Most of my accommodations no longer apply–because the online format is so conducive to them anyway. If I’m in pain–with a migraine or my period or my million other ailments–i can turn my camera off and tune in to class from my bed, the couch, laying facedown on the floor (ask an autistic kid).
My oral exams were online.I never imagined them this way, but being able to sit in my own comfortable chair, in my own turf, where I have done my best thinking and learning and teaching, I was more comfortable.
Meetings with professors, often nerve wracking, have a different air. I can (somewhat) control when the meeting ends, when it starts, where it happens (because it happens at home). I don’t have to contort myself around piles of papers and books, on uncomfortable chairs, in rooms with men who are sometimes just a little too friendly.
This isn’t to say that online education has been universally helpful to those with disabilities. To many, it has been the reverse. Even for those without disabilities, things like zoom fatigue, eye strain, and demands on attention can distract from studying and teaching and learning. But for me, it has made all the difference.
Katie EDS says
Thank you for this essay! It resonates with me, and I’m sure with many other disabled academics.
If you haven’t yet looked into the connective tissue disorder Ehlers-Danlos Syndrome III Hypermobility type (or Joint Hypermobility Spectrum Disorder, depending on the terminology in use), as well as the Mast Cell Activation Disorder that often accompanies it, please consider asking your doctor– tachycardia (Postural Orthostatic Tachycardia Syndrome), gastrointestinal disorders, migraines, depression, anxiety, unstable joints, and coordination problems are associated with these issues. Wishing you health and a good 2021!
That’s what i was thinking reading this as well! (Fellow Zebra here). I am full time faculty and teach 100% online and it is the only way I could have a career. Maybe not the best, but I can hide my bad days, procedures (even recent surgeries depending on when I had it).
Best of luck to you both!
I have ME and chronic anxiety, and online teaching has changed my life too. No more draining commutes, and I can ration exhausting human interaction. I’m at home, where I feel secure, and can stroke one of my cats when I feel anxious. And I believe I’m getting to know my students far better than I did when we were in a classroom together, as the informality of our situation leads to a more relaxed atmosphere.
Bramwel Wafula says
Thank you for this educative piece.Online education has helped students with different disorders. I have seen others students graduating with first class honors despite having physical challenges.Most of classes are contacted online where learners don’t need to go though the hustle of walking or driving to school frequently.