Editor’s note: This article is the first in a series on disability at Notre Dame and Saint Mary’s. Today’s story examines the language surrounding disability.
The 650 students registered with the Sara Bea Center for Students with Disabilities have the same abilities, interests, motivations and desires as the rest of the student body, Scott Howland, coordinator at Disability Services, said.
“You might have certain barriers that need to be overcome to reach the same goals,” he said. “I think sometimes with disability we tend to talk about it more as kind of patronizing — that we see someone with a disability as someone who would be the recipient of our service, of our goodwill, type of thing. So more of an approach of, ‘We’re providing these services and accommodations more for equality, giving them equal access.’”
Grace Agolia, a junior at Notre Dame who is deaf and uses a cochlear implant, said she thinks “disability” is “the best possible term we could use.”
“It’s not pejorative, in my opinion. If you’re talking about words like ‘differently-abled,’ ‘special,’ ‘abnormality,’ ‘defective’ — those are pejorative terms,” she said. “I especially don’t like ‘differently-abled’ because it just avoids the fact that the person has a disability. Yes, people with disabilities have a differing perspective on life, and I think that’s something that people should enter into conversation about, ask them about, but that doesn’t mean they are ‘differently-abled.’”
Agolia said she dislikes when people say “we all have disabilities.”
“That’s just bad. Because it demeans the experience of people who have a physical disability,” she said. “I would agree that we all have things that set us back, but disability is a very specific type of setback, and I don’t think that’s something that can be applied to everyone. You have to respect the experiences of people with disabilities. I try to say ‘people with disabilities’ instead of ‘disabled persons’ because of the ontological connotations.”
Agolia said she does not believe there should be a binary opposition between “disabled” and “non-disabled,” “deaf” and “not-deaf.”
“Yes, we have those different experiences, but there doesn’t have to be a dichotomy — the experiences can be integrated, in order to have a fuller vision of what the world is, of what our existence is like,” she said. “It lends us new perspectives into the human experience.”
Elizabeth Anthony, a senior at Notre Dame who has autoimmune conditions, said there is a sense of discomfort in discussing disabilities.
“But I think that’s kind of a societal thing — disabilities make people uncomfortable, I think,” she said. “And I think it makes people with invisible disabilities really uncomfortable to identify themselves as disabled because number one, they feel like other people won’t understand, and number two, it can be a very defeating thing to yourself, to say, ‘I need these extra things.’
“Especially because — I mean, in high school, I slept six hours a night and I ran cross country, and I did everything and I thought it was awesome. And then coming in my freshman year, I had to be significantly knocked down a few notches, usually by getting sick. So I’d be pushing myself too hard and I’d get sick and I’d be like, ‘OK, I need to step back.’
“And it’s really hard to admit that to yourself when you’re used to living a certain way, so I think that’s part of it too. People may not want to admit that they need the help that they might have to offer.”
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.
Crowley said she doesn’t see the word “disability” as a bad thing.
“She knows she has a disability, she embraces the fact that she has a disability. She can, however, see that someone might find that offensive. But for her, she knows she has a disability. If someone uses it in a negative way to hurt you, then that would be a problem, but she doesn’t think it’s always offensive,” Larsen said.
Jessica Ping, a freshman at Notre Dame who has CHILD syndrome, said she does not look at herself as disabled.
“I get that that is the connotation that comes with being as I am, so I don’t mind the word, but I would never describe myself as that,” she said. “I would never put that in my top descriptors of myself as a person because I think it’s beyond the disability. I’m just an average teenaged girl trying to survive college.”
Ross Kloeber, a first-year Notre Dame law student who is hard of hearing, said he does identify as disabled.
“I am disabled, I have a disability. Maybe at some point, I was more reserved about it. I don’t necessarily feel like it’s a bad thing anymore,” he said.
“The best thing to do is stop ‘other-ing’ people,” Kloeber said.
“Sometimes with disability, when it is visible you can kind of pick something out and realize that they’re different than you — and that’s really not a distinction because everybody’s different than you,” he said.
Bridget Dedelow, a senior at Saint Mary’s who has cerebral palsy, said the phrase “differently able” downplays the actual disability, and that there seem to be two sides of the spectrum: people who try to overcompensate with wording and people who are offensive.
“I’ve had people call me a cripple, and that’s just rude,” she said. “There will always be a negative connotation — there isn’t a happy word for disabled. People with disabilities do live super happy lives, but it’s not always recognizable on the surface.”
Dedelow said she has stopped trying to hide her disability.
“I hid for a lot of years — sat up straighter [and] walked more smoothly, trying to overcompensate and that’s exhausting,” she said. “It wasn’t an epiphany moment, but I tried to hide out of fear of isolation and I was able to let that go. … It’s not about comparing myself, it’s about coming to that understanding.”
People with disabilities are not “less valid,” but “less able in some ways,” Dedelow said.
“I want ‘open-minded’ stamped on people’s foreheads, because if you don’t talk to people about it you won’t know,” she said.
Fiona Van Antwerp, a sophomore at Saint Mary’s, said she has become comfortable talking about her dyslexia.
“At times I wished I didn’t have dyslexia because it’s frustrating, but once I learned how to compensate for it, I’m alright,” she said.
Accepting her disability hasn’t been easy, but Van Antwerp said her parents’ acceptance and love for her helped her to accept her dyslexia.
“My mom when I was little tried to find out everything she could about how to help me,” she said. “If they can accept [my dyslexia], then I can accept it.”
News Writers Megan Valley and Madison Jaros contributed to this story.
