Amelia O'HareNay Ross |
ABOUT AMELIAA typical day for Amelia O'Hare starts the way a typical day would for most college juniors. She wakes up, immediately makes coffee, gets dressed, and brushes her hair. The only noticeable difference in O'Hare's routine is she has some help- from her personal assistant, Nay Ross. Without Ross, O'Hare literally could not get out of bed each morning.
"I have type three SMA- spinal muscular atrophy," O'Hare said. "So that means I can't move my legs, and I have limited upper body strength." O'Hare, an urban planning major who hails from Alabama, came to the University of Illinois at Urbana-Champaign two years ago because of the independence it afforded her. "Back home in Alabama, there's no university that accommodates people with severe disabilities," she said. "If I wanted to go to college there it would be kind of impossible, cause just the dorms, and the buildings, and the layout of the campus is just not accommodating at all." Fortunately for O'Hare, she is able to be nearly completely independent at UIUC. She lives in her own accessible dorm room (at Nugent Hall), goes to the library and classes by herself, and is able to explore Champaign-Urbana unaccompanied in her spare time. "It's definitely unique and amazing," O'Hare said with a laugh. "A lot of doors have opened up for me." One of those doors that has opened up for her was the ability to hire her own personal assistant, Nay Ross. Ross, a junior majoring in molecular and cellular biology, was hired personally by O'Hare via the Illinois job board. "I've previously worked for the football stadium, the basketball stadium, and the dining hall," Ross said. "But as a pre-med student, I wanted to get that experience of working hands-on with someone and caring for them." Ross works with O'Hare for five hours each week, and she generally works the morning shift. This means she gets O'Hare out of bed, helps her get dressed, makes her coffee, and styles her hair. "I wanted to be able to choose who I hired because it's a pretty intimate thing," O'Hare said. "I wanted to choose someone I knew I'd get along with." For her own part, O'Hare said she hardly notices or identifies with her disability anymore. She also suffers from a learning disability, dyslexia, and she said that has almost been more of a challenge than her SMA. O'Hare and Ross both agreed that while accessibility at UIUC is commendable, they see areas that are lacking. "The first major thing is there's no wheelchair repair at DRES on campus," O'Hare said. "So if my wheel were to fall off, which it has, I would have to wait for someone to come from Peoria to fix it. It's like if my leg fell off." It's like if my leg fell off." -Amelia O'Hare Perhaps the biggest and most difficult challenge, however, is the stigma O'Hare said she feels surrounds people with disabilities.
"The biggest thing that's still a barrier is the idea of a person with a disability," she said. "I still get this weird pity thing sometimes; I think that's the biggest thing. But that's everywhere. And that's really hard to change." O'Hare said in the future she wants to make communities more accessible for everyone. A traveller herself, (Barcelona is the most accessible city she's ever been to, she said), she hopes to make the world a more accessible place. "My concentration is community development and social justice, and that basically means I'd like to work internationally to make communities around the world more equal," she said. "I believe everyone has a right to a city, and I'm working to make that happen." For more about O'Hare, watch the interviews we conducted with her here. To see O'Hare's morning routine, click here. |
I still get this weird pity thing sometimes; I think that's the biggest thing. But that's everywhere. And that's really hard to change. " |