The pain Samantha Miles experiences on daily basis is often rated worse than childbirth. From sleeping to digestion, no part of her day is free from pain.
Miles, a communication and leadership freshman, was diagnosed with complex regional pain syndrome five years ago, and her experience at UT has differed greatly from the average student. Like other students with chronic illnesses, UT’s limited accessibility accommodations affect Miles’ ability to go to and participate in class.
For people living with a chronic illness, a 30-minute nap doesn't have the same rejuvenating effect on the body as someone living without a chronic illness.
“People with chronic illnesses have to budget our energy because our bodies are going to retaliate if we don’t,” Miles said. “If not, we may not be able to function the next day.”
To explain this, Miles describes her illness to others using what is known as the spoon theory.
Created by Christine Miserandino, a woman with lupus who coined the widely-used metaphor, energy is represented by spoons. Each morning, Miles begins with a certain number, and carefully plans her day around how many “spoons” she has available. After going to class and doing other essential tasks, Miles is limited in what else she is able to do during the day.
While some things are unavoidable, Miles said many things that take her “spoons” are UT specific.
“I don't have a safe way to get to class”
Miles, who lives at Duren Residence Hall, drives to and from her classes because of her chronic illness. While she’s able to help conserve her body’s energy by driving, transportation between classes is still a stressful activity. The lack of parking spaces sometimes means she misses class altogether.
“There's been a few times this year that I have literally not gone to class because I haven't been able to find a nearby accessible parking spot and there's someone parked (in a handicapped spot) that doesn't have a permit,” Miles said.
Bobby Stone, Parking and Transportation Services director, said the current number of handicapped parking spaces on campus is 614 — almost double what is required by the Americans with Disabilities Act. The new D permit given to students with disabilities also allows access to University parking garages and park in pay-to-park spaces for free.
Despite the large quantity of spaces, Miles said the locations aren’t convenient.
“The point of having a handicap placard is to have the closest and most accessible spot for people who have mobility problems,” Miles said. “There's a large volume of them, but not close to very many things that I need to go to.”
When driving to work at Gregory Gym, Miles parks in front of the PCL. On game days, this area is blocked off to prevent fans from parking in these spots, which caused Miles to park 3/4 of a mile away one day last semester.
“(The parking employee) was like, ‘I don’t know what to tell you, it's game day baby,’” Miles said. “I cannot just tell my chronic illness that ‘it's game day baby.’”
After emailing the parking department, Miles said they resolved the issue promptly and allowed her to park in the area in the following weeks.
“I was pretty amazed at the responsiveness and they were really apologetic,” Miles said. “That's only one instance where people have been like understanding.”
Journalism sophomore Izabella Schrandt is a transfer student who was diagnosed with primary biliary cirrhosis, Crohn's disease, endometriosis and fibromyalgia within the past two years. With her illnesses comes pain that prevents her from sleeping, brain fog that makes it difficult for her to focus and mobility problems. For Schrandt, who lives in Jester, getting across campus to Moody is extremely difficult because she doesn’t have a car.
Scrandt said SURE Walk carts, which are not wheelchair-accessible, could be utilized to start providing transportation services to others.
“You still have to work to include people with those types of disabilities, but wouldn't some progress towards helping others be better than nobody gets help?” Schrandt said.
Plans for Longhorn Lift, a cart transportation system that will be made available to permanently and temporarily disabled students, are in the works. A similar program was provided at Miles’ high school housed on Ball State University.
Schrandt said the conversations and time frame are too vague to be encouraging.
“It’s like, ‘Oh we're talking about it, but nothing's happened,’” Schrandt said. “What does that mean a year from now? Five years?”
Blanca Gamez, associate director for administration and transportation for Parking and Transportation Services, said the $300,000 per year program consists of around six carts and three vehicles.
Of the three vehicles, only one is ADA compliant. But unlike the other two, it’s not used during the day because it’s old and not dependable.
“Freshman admissions was getting rid of (the vehicle) and we took it,” Gamez said. “They were sending it to surplus and we needed an ADA vehicle, but our department didn't have the funds to purchase one, so we took this one.”
Most students use SURE Walk to get home safely after a late night studying or a night out. Miles said it’s great that students can rely on the service when they need help getting home after a night out partying. But when you’re disabled, transportation is always an issue, not just on the weekends.
“Getting drunk is a choice and then you have a safe way to get back home,” Miles said. “Being disabled is not a choice, and I don't have a safe way to get to class … We don't have a choice to be disabled and it sucks and we battle it every day, not just on the weekends, and there's not something in place like that.”
“They don't know how to talk with you about it.”
Transportation is just one obstacle students with chronic illnesses face at UT. Class and workload accommodations present a new set of challenges.
Although Services for Students with Disabilities provides students with accomodations to help level the academic playing field, SSD assistant director Emily Shryock said not all professors understand the reasoning behind them, creating problems for the students they’re given to.
“Going to one of my classes takes two or three spoons because my teacher isn't super understanding and accommodating of my health,” Miles said. “I'm not asking for accommodations so I can be lazy.”
Last semester, although she had an accomodation for absences, one of Schrandt’s professors did not allow her to make up in-class assignments.
“Her reasoning was it wasn’t a big enough part of my grade,” Schrandt said. ”That’s a really (bad) excuse because it’s putting me at a disadvantage compared to my peers.”
Regardless of the impact, Schrandt said she felt robbed of the opportunity to earn part of her grade.
While accomodations training is available for professors, Shryock said the voluntary sessions are rarely attended and plans for mandatory training are being discussed.
“This lack of training can create situations where instructors may not realize the responsibilities they have in providing those accommodations,” Shryock said.
In addition to providing knowledge over accommodations, Miles said educating professors about the subject could provide an opportunity to acknowledge confidentiality.
Despite accomodation letters that state students’ disabilities are private and students are under no obligation to talk about them, Miles and the other students in her class were asked at the beginning of this semester to share any mobility and dietary restrictions with the class.
“When professors learn about an accommodation, I shouldn't feel like I have to tell every single (teaching assistant),” Miles said. “(The professor) should just cover me.”
Whether through email, phone or an in-person appointment, Shryock said SSD works with students to formulate a game plan to address situations where professors aren’t adhering to accomodations.
Despite this, Schrandt said bringing the problem up with SSD feels like a waste of energy.
“The attitude from SSD is like ‘Well, (professors) get to do what they want if that's their policy,’” Schrandt said. “Then what are the accommodations for? How am I protected?”
Training for SSD employees could also improve the process, Schrandt said. Even when talking with employees, Schrandt said it feels as if they’re reading from a script.
“It's almost like they don't know how to talk with you about it,” Schrandt said. “I feel like it's a random person sometimes.”
Shryock said the first part of the process may feel script-like for students because employees are required to read an outline consisting of general information for every student in order to cover the basics before moving to discussing each students’ unique situation.
Still, Schrandt feels it’s on the student to know their rights and navigate their disability and accommodations alone.
“I feel like the office that's supposed to help me navigate this and know my rights doesn't really do that,” Schrandt said. “Sometimes it feels like I’m fighting against them to figure out how to protect myself when they're supposed to be my ally.”
Overall, Miles said while UT pushes diversity and acceptance, she doesn’t feel included in that.
“It doesn't seem like it's a very high priority in the administration's minds,” Miles said. “That's not fair or very accepting and loving of me as a diverse person and as a disabled person by the University.”
The problem, Miles said, is the lack of representation of disabled people in the administration.
“If the University looks at their numbers, they think, ‘Oh we're doing great job,’ but they're not the ones living this,” Miles said. “They're not experiencing it every single day.”
While learning to navigate UT academically, both Miles and Schrandt said their illnesses also affect their social lives.
“With professors, I email them before I even meet them and (talk about my accomodations and) how they affect me,” Miles said. “You can't really do that with friends and it makes it even harder because I don't want my friends to be scared to touch me or ask how I'm feeling.”
A common conversation, Miles said, is when to tell new friends about her illness. While Miles doesn’t want it to be her identity, it’s still an important discussion.
Schrandt said even after deciding to tell friends, they don’t know how to react.
“We grow up with the idea of, ‘You get sick, you get better,’” Schrandt said. “It's really hard for people to wrap their heads around the fact that you won't get better.”
