But You Look Fine: A Reading List About Disabilities, Accommodations, and School

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During my freshman year of college, a series of unexpected neurological episodes ruptured my conception of how I moved through the world. I fainted one evening after track practice and began experiencing episodes of dizziness, blurred vision, and what the doctors would label as “aphasia” and “transient alteration of awareness,” medical terms that tried to characterize the way I would say the same word over and over unintentionally (“I, I, I, I, uh, I, I, I”) and lose memory of what had happened while I was incoherent.

I was a Division I athlete at the time, a runner. My identity in athletics and in school centered around perfectionism; I enjoyed running to hit a precise list of splits and I brought the same ceaseless work ethic to the classroom. I measured success in straight-A’s and faster times. But once my episodes began, my illusion of control eroded. I was no longer able to run without falling, and my schoolwork, which had been a joy all my life, was interrupted by my own body with periods of disorientation that lasted for hours. Though I saw a neurologist frequently, he was unable to give me a diagnosis.

When I wasn’t episodic, I presented as able-bodied; my legs still carried a history of muscle from my years of running and, when not experiencing symptoms, I could speak, see, write, walk, and remember as I had before. On the track, in the classroom, and as a patient at the doctor’s office, I was told to continue life as normal. My coach told me to run and grew frustrated when I collapsed on the track. My doctor told me I was fine. As a participant in a sport that rewards athletes who can withstand most pain without complaint, I was wary of telling professors about my condition. I told myself that my episodes would probably disappear as quickly as they had started. I told myself that the doctor had not diagnosed anything, and therefore my symptoms weren’t real. I told myself I was weak for not being able to overcome what ailed me. But one day, after visiting the ER for symptoms, and unable to see well enough to type an email, I called the phone number listed on a professor’s syllabus to tell her I wouldn’t make it. She responded that if I could walk, I should be in class.

Her answer now strikes me as ableist, but in the moment I didn’t have words to describe why her answer made me feel so bad. I felt personally guilty, like I’d done something wrong without knowing what it was. That day, and for years after, I walked myself to class even though it took me 30 minutes instead of the usual five to 10. I sat in class with my head rocking from vertigo, the pages of my literature text blurring. Because of her reaction, I assumed all professors might view my health condition as a nuisance. I became skilled at performing wellness, enough so that even people in graduate school made sly comments like, I’ve never seen you this way after reading my personal essays about my neurological symptoms, as if they, too, needed reassurance that what I had experienced was real.

I did not request accommodations until the second year of my PhD. For seven years of school, whenever I experienced a flurry of episodes, I’d spend an inordinate amount of time trying to read passages that had once felt joyful to engage with and arrive at class with blurred vision though I looked “just fine.” I managed my symptoms privately. And I am certainly not alone. Applying for accommodations at university, at least in my experience, seems easy in theory, but brings up complications. First, there is the stigma. For years, I worried that if I applied, I would be seen the same way my professor saw me during my undergraduate degree: as being too lazy to finish my work or attend class. I worried about being hired down the road. I feared that professors would see the way I present myself — I try hard to look well, no matter how I’m feeling — and think I was faking. My symptoms have disrupted some of the most sacred and mundane moments of my life without discrimination, but without an official diagnosis, I was afraid I wouldn’t be able to apply for accommodations in the first place. Once I did decide to, I had to secure a letter from my neurologist, which I imagine can also be an obstacle for students who lack financial resources for an additional visit or are discriminated against by medical professionals. I wish I had access to S.E. Smith’s empowering guide “How to Get Disability Accommodations at School” when I was learning to advocate for myself. It clearly explains laws, when to apply for accommodations, and how best to do so.

Seeking accommodations in school has been addressed recently in essays like “Could the fallout from the admissions scandal hurt kids with disabilities?” and “The most reprehensible part of the college admissions scandal: faking disability accommodations” because of the college admissions scandal, but I believe this is a conversation we should be having regularly. Students with disabilities should receive accommodations without having to perform exhausting physical and emotional tasks. I will heed the voices of others fighting the same fight and listen to their testimonies as I work as a member of a university to make change. This reading list is a place to start.

1. The Plight of the Disabled Graduate (Mikhail Zinshteyn, June 4, 2015, The Atlantic)

While the U.S. has made strides toward including students with disabilities in public school and ensuring accommodations are met, Mikhail Zinshteyn asks, what happens to students with disabilities after high school? Zinshteyn, by synthesizing various longitudinal studies, interviewing experts, and analyzing policies in place nationwide, makes clear that we have a long way to go.

The article’s author, Sarah Sparks, writes, however, that a “2004 federal longitudinal study found only 3 percent of students with disabilities in general education classrooms were specifically trained to speak and plan for themselves.”

2. Yale Will Not Save You (Esmé Weijun Wang, Winter 2019, The Sewanee Review)

The summer before attending her first semester at Yale, Esmé Weijun Wang is diagnosed with bipolar disorder. She is instructed to see a woman in the Department of Mental Hygiene who acts as a therapist and psychiatrist — and one who fails to recognize significant problems in Wang’s bloodwork. This essay is not only about Wang’s harrowing experience and Yale’s failure to create an inclusive and supportive educational environment, it also sheds light on how many universities fail students with disabilities or mental illness.

After blogging about my Yale experience, I’d received a flood of emails from students battling to stay in their colleges, students on enforced leave from their colleges, and former college students who, like me, were never allowed to return to school. In her article, Baker makes the case that psychiatric illness is punished by colleges and universities that instead ought to be accommodating students under the Americans with Disabilities Act (ADA).

3. The Worry I No Longer Remember Living Without (Nicole Chung, March 9, 2017, Hazlitt)

After he nominated Jeff Sessions for Attorney General, comments resurfaced from Sessions’s 2000 speech regarding the Individuals with Disabilities Education Act (IDEA) and its protections for disabled students, which he called ‘the single most irritating problem for teachers throughout America today.’

Nicole Chung writes about her experiences advocating for her autistic daughter’s lawful rights at school, and the ways in which the current administration’s decisions about education have led to collective anxieties about how students with disabilities will receive accommodations.

4. Even If You Can’t See It: Invisible Disability and Neurodiversity (Sejal A. Shah, Jan/Feb 2019, Kenyon Review Online)

Sejal A. Shah experiences her first manic episode while in her MFA program, but soon learns to perform wellness. Afraid of being deemed unhireable in an already highly-competitive academic job market, Shah hides her illness for years. Shah explores what her life would have been like had accommodations been presented to her, or what academia as a whole might be like if an effort toward genuine inclusion was made.

I didn’t know the laws then; I didn’t know them until writing this essay.  I looked normal; I passed. Would my career have turned out differently had I been willing to come out (for that’s what it felt like, an emergence into a world that might not accept me)?

5. Why We Dread Disability Myths (Tara Wood, Craig A. Meyer, and Dev Bose, May 24, 2017, The Chronicle of Higher Education)

In response to a problematic essay, “Why I Dread the Accommodations Talk” by Gail A. Hornstein, Tara Wood, Craig A. Meyer, and Dev Bos write to dispel harmful misconceptions about disability as related to faculty and students within academia.

Perhaps the most dangerous myth is the idea that disability itself is inherently a bad thing.

This myth is the most insidious of all because it is presented as a matter of common sense: that disability is something to dread. Now imagine students who see disability as a part of their identity. In what position does Hornstein’s rhetoric place their sense of themselves? Not a very good one.

6. How to Make Grad School More Humane (David M. Perry, February 5, 2019, Pacific Standard)

Between immense workloads, balancing teaching responsibilities with schoolwork, insufficient stipends, and dismal job markets, graduate school brings with it many stressors. Add a disability, and graduate school becomes even more difficult, as David M. Perry articulates in this essay.

Some have tried to arrange formal accommodation through their universities’ disability resource centers. Others avoided seeking accommodations for a variety of reasons, including the lack of a medical diagnosis, a lack of trust in university bureaucracy, or a sense that disability services were, at best, organized around the needs of undergraduate students—not for those pursuing years-long work in advanced study.

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Jacqueline Alnes is working on a memoir about running and neurological illness. You can find her on Instagram and Twitter @jacquelinealnes.