For Amelia O’Hare, senior in FAA, traveling from Alabama to Illinois means independence.

O’Hare has Spinal Muscular Atrophy, a muscle weakening disease that requires her to utilize a power wheelchair.

The universities located around her hometown of Birmingham, Alabama do not have the accessibility she needs.

O’Hare explained that being on campus means access to a better personal assistant (PA) system. At home, in Birmingham, O’Hare explained there is no PA program she could attain.

If she wanted to have a PA, she would have to send in a form to the rehabilitation center. O’Hare described the process as “crazy.”

“I would not get to choose the person I am working with and usually they are older nurses.” O’Hare said.

O’Hare said she has never gone through the PA process in her hometown because she does not feel comfortable with it. Instead, while at home, she relies on her family for help with daily tasks.

“I think that is why (the University) is really unique,” O’Hare said. “Even after you have graduated and you are in Chicago, or wherever, you have people who have helped you and they have friends who would be interested in helping too. There is a great community set up for PA support.”

Although she is a student, O’Hare said she manages her PAs because she is their employer. She said that while she has developed friendships with her PAs, she still has to set boundaries because she does not want a PA to take advantage of the situation.

“I’m their employer so there is a boundary you have to set between being a friend and being their employer,” O’Hare said. “It can be a challenge, but if you do it right it can turn out great.”

“I have made so many amazing friends through the people who help me, so a lot of the times some PAs and I, who I’ve grown really close to, go on trips and do things together outside of regular PA shifts,” she said. “There is a balance.”

This balance also means having to decide to dismiss PAs that do not click with her personality. O’Hare said the process of letting them go is awkward but always for the best. Luckily, her PAs work for her only for a semester at time, so if the relationship is not working, O’Hare said she can hire a new PA.

O’Hare said there are two ways she can hire a PA. Through the Beckwith program, a residential service provided through Nugent Hall, she can select a PA by viewing a pool of PAs that have been hired in the past. 

She can also post on the virtual job board online. She can then get email responses from interested students. This is how students make private hires.

O’Hare has about five shifts every day. Her PA helps get her out of bed, dresses her, assists with going to the bathroom, prepares her coffee and makes her bed. The other shifts throughout the day are typically bathroom shifts for O’Hare. O’Hare said this schedule can change based on her daily needs.

“Every person with a disability needs something different,” she said.

When planning for her semester, O’Hare first gets her class schedule together and chooses PA shifts in between that might work. She then asks the PAs if any of the times match up with their schedules. O’Hare can find other PAs to cover shifts if her primary PA has class at a conflicting time.

Within the Beckwith program there is a PA known as a “floater.” This is a PA at the dorm who is on call for four hour shifts.

“If I had an emergency or needed something quickly, (the floaters) would help me,” O’Hare said.

Stephanie Gallo is a recent University graduate who worked as a PA on campus for other students. She chose to take on this role as preparation for her future career in the medical field.

“I love this job because I feel that if you can put in the time necessary, then you can make a big difference in the lives of the people that you are working for,” Gallo said.

When it comes to training a PA, O’Hare said she ensures the individual is comfortable with lifting her out of her chair. Because O’Hare cannot independently transfer, she said the person has to be strong. O’Hare also sets up an interview process before hiring a PA. She said it’s always interesting to learn why the individual is invested in the job.

“It’s fun meeting new people,” O’Hare said. “A lot of the people I usually interview are nursing students or physical therapy students.”

Training people is strange for O’Hare because sometimes she has to teach certain skills, such as how to correctly put on her shirt. She said she has to be specific and explain which arm to pick up and which sleeve to put it through.

“It’s so funny, telling a person how to put a shirt on, it’s so strange,” she said. “You don’t really think about how to do these things on a daily basis until you have to explain it to someone. It’s interesting.”

From working as a PA, Gallo explained that she has gained a new perspective on wheelchair use on campus.

“I definitely think our campus can use some repairs,” she said. “I think the way they should go about that is by talking to the students who are in wheelchairs who can give them a first-hand recommendation of what needs to be fixed first.”

Overall, O’Hare finds the PA relationship to be a very rewarding and unique experience. She said because both she and her PA are students and close in age, they can make a stronger connection. For example, both she and her PA can relate to the stress of school and staying up late.

“I think it’s really great for (the PAs’) future careers too,” O’Hare said.

O’Hare went on to explain how being a PA makes people more aware of what people with disabilities go through and who they are as individuals.

“There’s definitely a lot of mutual respect that goes on between the both of us,” O’Hare said.

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@elyssakaufman