Learning to Live With Disability in Grad School

Just two months after I started my master’s in history program in 2021, an emergency room doctor in Columbia, S.C., reviewed my MRI scan and told me that I had multiple sclerosis: I would continue to experience progressive neurological degeneration for the rest of my life.

A night passed in the hospital. A neurologist and a hospitalist confirmed the diagnosis, yet a few hours later, a neurological fellow and another neurologist cast doubt on that diagnosis. It is difficult to identify early MS with any degree of certainty, so my treating neurologist did not want to discuss treatment options without additional diagnostic testing. (So many needles!)

I returned to my cramped studio apartment full of doubts as to what my future would hold. I didn’t know what my long-term prognosis would look like. I didn’t know if I would be able to finish the semester, much less my program. I didn’t even know for sure what was wrong with me. Most troubling of all, I feared that my career in the history profession might be dead in the water before I even reached the deeps. After devoting what seemed like every waking moment of my undergraduate experience to putting together a competitive graduate school application, I couldn’t help but feel that I had wasted all my time. Before I could confront these uncertainties, however, I had to deal with the immediate commitments in my life.

The day after I was discharged from the hospital, I was scheduled to deliver the first instructional lecture of my graduate career—to roughly 300 students. The instructor of record offered for me to reschedule or cancel my talk. That talk, in which I discussed how Jeffersonian republicanism influenced the South’s response to Brown v. Board of Education, was a crossroads in my life. At the time, I felt I could either devote myself to my passion for history for as long as possible —health be damned—or I could go home to Virginia and languish in what felt like a death sentence.

In that moment, canceling my lecture would have been the same as walking away from my dream. At the same time, continuing to move forward felt impossible. Of course, that catastrophic moment of choice was largely a product of my own imagination. I did not yet have a concrete diagnosis, and despite the demoralizing depiction of MS in the media, recent treatments have made the disease much more manageable for most people.

As I was standing at this crossroads, my family and friends urged me to return home to Virginia and pursue a less stressful future—one free of funding anxieties, conference proposals and fellowship rejections. But before committing to any course of action, I called my uncle and explained the situation. Instead of talking with me about treatment plans, new dietary restrictions or my long-term prognosis like so many other people had, he said, “An extraordinarily small percentage of people get the opportunity to explore their curiosity for a living, and you have fought far too long and too hard to give up now that this future is within your reach. Don’t.” All the other people in my life were concerned my health and recovery, but this uncle, who was himself a professor of agricultural engineering, pushed me to hold on to the future I’d always imagined just a little bit longer. He was right.

I delivered the lecture.

The next week, as scheduled, I consulted with my neurologist. Instead of multiple sclerosis, he told me, I was suffering from targeted demyelination and brain inflammation caused by a recent flu shot. Another neurologist at Virginia Commonwealth University Health in Richmond later confirmed this diagnosis. The condition, which has been identified in fewer than 25 people internationally, is not treatable. I will likely have a prominent limp for the rest of my life, suffer from limited dexterity in my right hand and rely on a cane in certain environments. I must eschew future flu vaccinations (fewer needles, more flu). On top of all that, I am now an MRI frequent flier; it’s a shame there is no Delta rewards card for the radiology lab.

In the first moments after learning my actual condition, three new thoughts entered my head: 1) damn, I wish I were a southpaw, 2) maybe I will end up in textbooks after all and 3) this is the best news a doctor has ever given me. I would have to modify my morning runs, and I would need to figure out the speech-to-text feature on my laptop. But I probably wasn’t going to get any worse. My symptoms would remain stable. My life was going to change significantly, but it would continue as planned.

That said, for the past two years, my life has been a juggling act of coursework, medical appointments, diagnoses, misdiagnoses, rediagnoses, teaching commitments, neural networking, social networking, professional networking, research and disability limitations. I have seen firsthand that it is possible to fight, struggle, fall, reclaim ground, fall again, fail, struggle again and quite likely succeed in the face of many challenges. My physical limitations have forced me to adjust my personal expectations and realize that it is acceptable­—no, necessary—to ask for help. To that end, I have learned that most, but certainly not all, people are compassionate and understanding. For every snide comment doubting the existence of invisible disability, a dozen folks are standing in the breach ready to offer support.

My disability forces me to face certain challenges on the daily. And my continuing health journey has illuminated some peculiarities of the graduate student experience and the academic profession that senior administrators and those who supervise departments should bear in mind when devising accessibility plans and strategies.

First and foremost, universities and academic departments must make greater strides to better accommodate and normalize invisible disabilities. I intermittently rely on a cane for mobility support, but more often than not, the only visual cue of my disability is a slight limp on my right side. However, my experiences with people—even those who know about my injury—differ significantly depending on whether or not I have my cane. I often find myself agreeing with a colleague or faculty member that I am doing “better” because it is easier than explaining that my cane is not a permanent fixture of my life. Students regularly inquired about my cane only to then ask why I was not standing for our discussion section the very next week. In a sense, my cane became a physical symbol of my disability and the first half of a deeply flawed if-then statement. If I wasn’t using my cane, then I must be doing fine. That often wasn’t the case.

From my experience, the shroud of mystery surrounding an invisible disability is not a problem at the interpersonal or individual level. Most people in this profession are more than willing to make reasonable accommodations for students and colleagues alike. However, it can be difficult to ask for accommodations when you appear to be getting along OK. Often, when someone fears that others won’t take their request seriously, they simply won’t ask for help at all.

At the same time, educators must ensure an equitable playing field for all students. It isn’t that they aren’t accommodating invisible disabilities that they know about and understand, but they do not want to inappropriately give preferential treatment. To that end, all institutions should provide resources for faculty, administrators and students to better understand, identify and accommodate an invisible disability.

In addition, providing transportation and health support resources for graduate students, faculty and staff members is vital for creating an accessible academic environment. Graduate study—and finding employment in the professoriate, for that matter—often requires moving to an unfamiliar location away from networks of family and friends. That mobility can simultaneously enrich and uproot life. It can be both socially expansive and incredibly isolating.

When I went to the ER in 2021, for example, I asked another graduate student, whom I barely knew at the time, to drive me. I did not have any other contacts in Columbia, and I was not comfortable driving myself because of the numbness in my dominant hand. I sat in that examination room for hours, waiting on the results of my scans, talking to doctor after doctor, googling incessantly, and desperately calling folks back home to try to make sense of it all. I was lucky, as I only had to spend one night alone in the hospital. My parents made the drive down from Virginia the next morning. Other grad students might not be so fortunate.

According to the CDC, as many as 25 percent of all American adults have some type of disability. It stands to reason, then, that many individuals at all stages in their academic journey—whether in the first year of their undergraduate career or on the tenure track—experience disability. As an academic profession and community, we can do more to normalize disability—both visible and invisible—and provide meaningful accommodations. We shouldn’t be celebrating institutions and individuals for their efforts to help people with disabilities succeed. Providing the necessary resources should be simply par for the course.