When I first met with the accessibility office at my college, I did not know what to expect. I was really nervous and physically exhausted. My most recent flare-up left me hospitalized twice and sapped my strength to the point where I could barely lift my head off a pillow.
The head of the accessibility office allowed me to get accommodations such as extra time on exams, the ability to use my computer for written assignments, and the permission to record classes. I also got housing accommodations, including a room on the first floor with an attached bathroom and laundry facilities nearby.
While I’m not required to disclose details of my condition to my college professors, I generally tell them I have lupus and a muscle disease, and have been prone to bad flares. When I’m open and honest about my condition, I am less anxious about reaching out for help later in the semester. My professors have, in turn, offered me extra help when I miss classes due to doctor’s appointments. At times, they’ve provided me with recordings of their lectures or a Zoom link, so I can follow along when I am too tired to make it to class. They’ve allowed me to sit when others are standing during labs.
From my meetings with the college accessibility office and my professors, I thought I was well-positioned to learn alongside my peers. However, I soon realized that the school is not built to accommodate those with disabilities. My condition, chronic and episodic, began to feel like an inconvenience to others.
“I don’t see why there’s a need for a handicap door; it’s not like it’s going to be used,” I heard a maintenance man tell his colleague as they were repairing the automatic door. From the perch of his ladder, he did not see me struggling to open the door with my walker. (An automatic door is much heavier than a regular door, and thus a broken automatic door is much harder to open than a working regular one.)
Good intentions don’t always translate into a truly accessible campus.
“You can’t park in these handicapped spots because you’re a student, not a visitor, but you can park over by the gates [at the edge of campus].” Already late for class, I headed back to my dorm because my energy was sapped, and it was a shorter walk than to class. Two days later, when I called campus safety to get a ride to my car, I heard: “We’re not picking up people because of COVID.” It took me a while to process what the person on the other end of the line had said to me. I knew I qualified to get a ride when I was too tired to walk.
And this year, when I inquired about remote access to lectures, I was turned down. Even when professors wanted to be flexible, the college said accreditation rules permitted remote learning “only for COVID-related circumstances.” My disabilities didn’t qualify.
There were instances when I was in the hospital, at a doctor’s appointment, or too unwell to make it to class. My professors allowing me remote access helped me stay on track. So I was surprised that I would now have to miss both class and class material for health reasons that I could not control. After all, I had already been granted permission to record lectures.
I sometimes worry about getting through my next two years on campus. It seems that my school likes the idea of an accessible campus, but good intentions don’t always translate into truly accessible spaces where all feel welcome. While I appreciate those teachers willing to accommodate me, I often wish I didn’t have to ask for the accessibility I need.
Earlier this year, in a sociology class, I did a project on accessibility on college campuses. In my research, I read about a concept called the Universal Design for Learning, which aims to make classes and extracurriculars more accessible for all students — not just those with disabilities. Universal Design gives students remote access to classes, detailed curriculum outlines, more flexible absence policies, and different ways of engaging with the class materials, including supplemental YouTube videos, PowerPoint presentations, and other digital resources. Implementing Universal Design at colleges like mine would communicate this to students: This institution doesn’t see accessibility as a burden; it cares about the education and success of all its students. Including me.
Brooklyn Johnson, of Memphis, is a college sophomore majoring in health equity, with the goal of becoming a pediatric specialist. Johnson enjoys spending time with family and friends and playing with her three dogs.