Several weeks ago, I sat across from a girl with a host of liver and kidney issues, whose gastrointestinal system was in severe decay and who had trouble breathing. Yet she was still smiling.
Her name is Ellie Hall. She is a sophomore with Ehlers-Danlos syndrome (EDS) and postural orthostatic tachycardia syndrome (POTS). This combination of afflictions creates aching and dislocated joints, organ problems and energy and memory deficits. Despite all this, she is a double major in political science and theatre technology and design.
“A lot of my organs don’t really work,” Hall said. “Currently, my G.I. system is getting progressively worse and will shut down eventually. Last semester I had a lot of issues with my liver and my kidneys — nothing related to alcohol, but I do joke that I have the body of a 90-year-old alcoholic because I certainly have similar liver issues.”
The list of unfortunate health problems that Hall deals with goes on. Still, she may be one of only a few who can be so congenial about problems that make day-to-day life a struggle.
“Pretty much everything is hard for me, but I also have a very morbid sense of humor,” Hall said. “That’s the only way I’m able to get through the day.”
She notes that her time living with such disabilities is made a lot easier with the help of a strong support group and accommodations provided to her by Services for Students with Disabilities (SSD) at Virginia Tech.
“(My) physical accommodations are that I can be late to class or I can miss class if I can’t physically make it there, so that could be an issue where I have an extreme migraine or I have temporary paralysis in my limbs, in which case I’m not getting out of bed,” Hall said. “I can turn in assignments late because sometimes I am too sick to do anything, I have a notetaker accommodation because notetaking can be really hard on my hands … I can reschedule tests, I can take tests in the testing center and I have double time on tests.”
When starting new classes every semester, she carries documents with her detailing these accommodations and provides them to each professor or their TAs. Hall says that she’s never had any issues with them letting her accommodations. However, that story is different for another student I spoke with.
“Currently, for most of my classes — there’s still one where there’s a problem for one of my accommodations — dyslexia and testing anxiety are the two they are pretty accommodating for,” said Serena Johnstone, a sophomore double-majoring in human nutrition, foods and exercise and psychology. “But (some classes) are not giving me accommodations for dyslexia.”
Johnstone’s dyslexia accommodation provides some leeway when it comes to grading by forgiving occasional misplaced numbers or letters.
“I went back to SSD and they basically said that the department has core values and it would go against those values if they accepted my accommodations for dyslexia,” Johnstone said. “So I just have to get over it basically.”
“It just doesn’t make any sense, like I can’t be the first person to be dyslexic and taking chemistry,” Johnstone said. “So I don’t understand why there isn’t a protocol in place for people going through what I am.”
When I reached out to SSD about the nature of those comments, they had this to say.
“SSD assists the university in removing barriers to equal access for students with disabilities. We work with students through an interactive process of identifying reasonable accommodations. Sometimes a reasonable accommodation fundamentally alters the essential nature of a course so we work with the student and faculty to find alternatives until the most appropriate accommodation is found.”
The thread that connects both of these stories is the fact that they are both students with invisible disabilities — a disability not noticeable based on appearances alone. Hall and Johnstone have also both experienced their fair share of skepticism from other people when it comes to the existence of their disabilities.
Hall has experienced disbelief about the fact that she deals with chronic pain or that she qualifies for handicapped parking spots.
“I rarely use mobility aids, especially on campus,” Hall said. “I normally use them when I’m in a city or in an airport or mall, so it’s hard to tell visually that I’m disabled. People give me crap for that; they say, ‘Oh, you’re not really handicapped. Why are you using the pass?’”
The unfortunate reality about those with invisible disabilities is that, despite being diagnosed by medical professionals, their affliction isn’t real to many just because it can’t be seen. So, what can we do about it? Well, for starters, maybe we can practice something that I believe we don’t do enough: believe people. We often make the mistake that we are having the same experience as everyone else and that those who complain or need special accommodation are doing so just because of a character defect or the fact that they are “snowflakes.” While we don’t want to create environments where people are receiving unfair advantages, we may be doing greater harm by leaving the playing field uneven.