‘Disability is not the whole of who you are’
Catherine Owers and Haleigh Ehmsen | Friday, April 22, 2016
Editor’s note: This is the fifth day in a series on disability at Notre Dame and Saint Mary’s. Today’s story focuses on the social impact of disabilities at the College and University.
For students with disabilities, the University and College provide notetakers, extended test time and accessible dorm rooms, among other resources.
But the impact of disabilities extends beyond the classroom and the residence hall, and the Sara Bea Center for Students with Disabilities and the Disability Resource Office cannot solve all the challenges that come with everyday social interactions for those students.
Elizabeth Anthony, a senior with autoimmune conditions including lupus and celiac disease, says the accompanying chronic fatigue has impacted her social relationships.
“Just because it feels so stupid to always say you’re tired, but when you have chronic fatigue it’s not really something that you can just explain to other people. Going out for me is just not really an option, because I can’t drink, I cannot stay up past midnight — it just doesn’t work for me,” she said. “And trying to explain that to people, and then trying to still be engaged in social things. My friends have been great, but it’s changed our relationship a lot, just in what I’m able to do.”
Anthony said she has felt that a number of times throughout her career at Notre Dame, she has had to choose between friends or school work.
“So you know a lot of times, you’ll see things that say, ‘You can have a social life or sleep or good grades — but not all three’? And I think that’s true for every Notre Dame student, but for me sleep is no longer a choice,” she said.
Grace Agolia, a junior who is deaf and uses a cochlear implant, says because her disability is an invisible one, she has to constantly remind people of effective communication strategies, such as speaking with an appropriate volume.
“In situations with background noise, it’s very hard. I often feel lost, and I have to turn to the person next to me and say, ‘What was that?’ And people can get very tired of doing that, and I understand that’s annoying,” she said.
When eating in the dining hall, Agolia said she always attempts to position herself to hear as many people at the table as she can.
“Even just people like diagonally from me, just across can be really hard to hear. Because South Dining Hall can be really loud — North is better in terms of acoustics because it has carpeting. South Dining Hall has no carpeting, and high ceilings, so the acoustics are bad,” she said. “So I try to make my needs known to my friends, like can we sit in a table in a quieter part of the dining hall, like in a corner or something, or can I sit over here, because it will help me hear better. So a lot of times that has to come from me.”
Agolia said she is appreciative when friends recognize what she needs without her having to ask for accommodations.
“I really, really appreciate it when my friends remember to walk on my right side, and not on my left, it’s super helpful. It just makes my day when people remember,” she said. “And when I feel lost or confused in a conversation, when one of my friends sees my look of confusion and turns to me and speaks closely to my implant, especially in a noisy situation, just telling me what that person said. And having patience when I say ‘what’ fifty times in a row.”
Fiona Van Antwerp, a sophomore at Saint Mary’s with dyslexia, said she told her friends about her disability halfway through her first semester of College, and it took them a while to figure it out and understand, but they have been supportive.
“They ask me, ‘What can we do for you? How can we help you?’” she said. “My roommate asks if she can play music because she knows I’m an auditory learner.”
Ross Kloeber, a first-year law student who is hard of hearing, said he wishes people would push through their discomfort with his disability.
“For me, a lot of times people will get uncomfortable when the communication breaks down, so if I’m not hearing you, with stress, I stop lip-reading as well, with things like that,” he said. “All those things happen, and they get frustrated, they feel like they’re doing something wrong or there’s something wrong with me — all those things happen at once. It just creates this breakdown in communication, and people do not see the interaction as worth getting over that breakdown.”
Megan Crowley, a freshman at Notre Dame, has Pompe disease, which progressively weakens muscles.
Editor’s note: Crowley spoke to The Observer with the assistance of her nurse, Debbie Larsen, who is quoted below.
“One of the things that bothers her the most is she understands some people don’t talk to her, but she prefers that to someone who’s talking to her and acting like they understand her and they really don’t,” Larsen said. “They don’t want to ask you to repeat yourself. She’s okay with repeating herself as many times as she needs to, but people don’t usually ask.”
Jessica Ping is a freshman at Notre Dame who has CHILD syndrome, a limb and skin deficiency, and has only partial limbs on her left side.
“One thing I notice a lot is people are almost, I don’t really want to say afraid, but they don’t know how to handle the situation, so they don’t really confront it,” she said. “They’ll be social, but most of the time I have to be the one to initiate the conversation, which is fine, but it would be nice for a reciprocal type thing.”
Kloeber said he has found navigating the social aspect of law school to be “what you make of it” with a disability.
“Obviously, people with disabilities face unique struggles with socializing, but I want to be careful and not try to homogenize it,” he said. “Everyone has different struggles — whereas my thing might be trying to communicate with people in a loud bar, it would be different from what someone else might be dealing with. It’s not one experience, it’s just different.”
Agolia said people have been accepting of the fact that she is more than her disability.
“Disability is not the whole of who you are,” she said. “It is a part of my identity, but it doesn’t define me.”
News writers Megan Valley and Madison Jaros contributed to this story.