CINCINNATI (AP) — Sara Whitestone was frustrated and didn’t mind if everybody knew it.
After waiting on a windy November day for a University of Cincinnati shuttle that would accommodate her wheelchair, the sophomore then encountered a bus without a lift and a driver reluctant to help.
“Not okay UC! I don’t want to keep hearing the same apologies!” she tweeted after pulling herself onto the bus.
Later, after wheeling into the Tangeman University Center, Whitestone was blunt about her plight.
“It’s demoralizing,” she said, “to have to depend on someone else.”
In some ways, Whitestone seems like the average 19-year-old. She’s majoring in biomedical sciences, takes some classes online and would like more time to go out on the weekends.
But she’s also afflicted with a disease that some days keeps her unable to get out of bed. Even climbing onto a bus will keep her in pain all day.
So Whitestone has gone a step beyond simply dealing with her own circumstances. Since arriving at UC in 2012 from Valley View High School in Germantown, a Dayton suburb, she’s made it her personal mission to improve accessibility to students with disabilities.
Called SaraSpins, the group she started has raised nearly $20,000 for motorized wheelchairs for at least one other student, and raised awareness on the University of Cincinnati’s main campus.
Whitestone struggles with daily tasks that most students take for granted, and sometimes that gets her down. She gives herself injections every day, and a nurse comes to her off-campus apartment once a week to inject more medicine.
“It’s chronic pain. It’s every day,” she said. “Those days are really hard for me. If I wasn’t in this chair, you wouldn’t think there was anything wrong with me. That’s why they call it the invisible illness.”
Whitestone seems to crave normalcy, like a night out with friends or a seat in the regular student section at Nippert Stadium.
But she’s also sacrificed some of her regular life for her cause, and that seems to be the way she wants it, said her mother, Jen Whitestone.
“I think most of us who aren’t in wheelchairs assume that the world’s accessible,” Jen Whitestone said. “Sara feels it’s her job now to let people know that it isn’t.
“Her father and I tell her, ‘Don’t forget about your classes.’ But we also see she feels she has this social obligation, and we get that. It’s who she is.”
Whitestone wasn’t always in a wheelchair. She has played flute and piccolo with the Dayton Philharmonic Youth Orchestra and ran the Flying Pig half-marathon in 2010.
But in late November of that year Nov. 24, to be exact she missed school with a headache. She thought she had an inner-ear infection.
She eventually was diagnosed with myalgic encephalomyelitis, or ME, sometimes called chronic fatigue syndrome.
One of the symptoms is POTS, a debilitating auto-immune disease that eventually left Whitestone dependent on a wheelchair.
She was hospitalized a couple of weeks later, and Christmas 2010 was, she recalls, “probably the sickest I’ve ever been.”
Her parents tried to get her to face the reality that she wouldn’t go to college, at least not right away. She was essentially home-bound for a year.
She got herself to the University of Cincinnati, an accomplishment she calls “a miracle.”
But she soon realized that getting around campus was harder than she had anticipated. Riding her wheelchair down Main Street on campus, the chair bounced over all the bricks, and Whitestone has to go through three sets of doors, take an elevator and out-of-the-way ramp to traverse about 50 yards to the western edge of Nippert Stadium.
“I think it’s accessible, but it’s certainly not equal opportunity and it’s certainly not inclusive,” Whitestone said. “Every time a friend walks with me to class, they’re like, ‘Where are you going?’ The heart of main campus doesn’t even seem welcoming to me. Like the labs in Rieveschl. They have to bring in a special lower table. I can’t reach the sinks. I can’t reach the glasses. I can’t reach anything.”
Whitestone is one of fewer than 10 students on main campus who have registered for disability services with a wheelchair.
“I do understand that I’m one person out of 43,000 students,” she said. “But there’s a reason there are so few of us.”
Standing up for those who stay in a chair, Whitestone and SaraSpins have become ubiquitous at the university, appearing before the Board of Trustees and organizing a “UC Wheels” event when close to 70 students rode around campus on wheelchairs to see for themselves. She even was grand marshal of this fall’s Main Street Stride, an annual fall event.
Whitestone has done several of those trips with campus architects and other officials, searching for ways to make it easier for those who use a wheelchair.
One example: a smooth-pavement path on Main Street.
“She’s an inspiration,” said Abbey Hunter of Jeffersonville, Ind., a sophomore who also has suffered from POTS and used a wheelchair provided by the group last year. Intensive therapy has her able to walk on her own this year.
“Everybody knows her,” Hunter said. “She’s a Twitter ninja. She’s pretty ill and she’s trucking along.”
Hunter met Whitestone on her first day on campus. She said the normal three- to four-minute walk from the center of campus to where she takes most of her classes, will take 12-13 minutes.
“It takes a lot of energy just to plan where you want to go,” Hunter said. “Definitely, getting around is frustrating.”
Student body president Joe Blizzard spent a half-day in a manual wheelchair during the UC Wheels event this fall. He had never noticed, for example, that some bathrooms in Tangeman require you to go through three separate doors.
“You’ve got to take some time and plan where you’re going,” Blizzard said. “Main Street was difficult. And my arms are pretty sore.”
Whitestone says just that awareness will help.
“I feel like students and faculty are listening. I’m starting to make a difference,” she said. “I hope by the time I leave UC there are structural changes to campus.”
Mike Southern, director of the universitys Office of Disability Services, met Whitestone during her first semester. He acknowledges that Main Street could be more accessible to wheelchairs.
The disability services office services about 500 students who are dealing with issues ranging from learning disabilities to mental health problems to serious injuries.
“We try our best to be accessible, but I think Sara has brought the understanding that we can do better,” he said. “She will do some great things in her life. I have no doubt about that.”
Pursuing those changes may have left some scars, but she is determined to keep working.
“People aren’t mean, they’re just ignorant,” she said. “They can be extremely disrespectful. People ask, ‘What’s wrong with you?’ I feel like I’m supposed to represent everybody in a wheelchair, and I am constantly having to prove that I’m OK. All the time.”
Dreams face up to reality of limits on time and energy Whitestone is a little uncertain about her own future.
“I really want to go to medical school,” she said. “Realistically, I have to prepare myself that I’m not going to be able to do that.”
She took two online classes this fall and will depend on them even more next semester.
Jen Whitestone calls her daughter “an old soul” who was talking to adults as a preschooler. Now, she says Sara lives in nearly constant discomfort.
She has to see cardiologists and neurologists, and called recently when her gums were bleeding.
“She gets feisty and frustrated,” Jen Whitestone says of her daughter. “She has a limited amount of energy, and she has to make decisions every day about what to do with that energy, to go to class or even to take a shower.
“She just has a body that is continually attacking itself.”
Whitestone acknowledges all that, but says she still has a mission that extends beyond herself.
“I want a student who comes to UC to feel welcome,” she said. “Disability services is a civil rights issue. I’m learning that full-time.”