Until he went off to college, Leo Kullander relied on his parents and brother around the clock to help him with routine tasks like getting up in the morning, dressing, and using the bathroom.
Now the 20-year-old sophomore, majoring in engineering physics at the University of Illinois at Urbana-Champaign, enjoys a measure of independence unheard of for most students with severe physical disabilities.
Mr. Kullander has spinal muscular atrophy, a disease that causes muscles to degenerate and weaken to the point that many with the condition, like him, use motorized wheelchairs.
Through a special program here on Illinois’s flagship campus, Mr. Kullander lives in a new dormitory equipped with voice-activated computer stations, motorized ceiling lifts to aid mobility, and a wireless pager system through which he can summon help 24 hours a day.
He and the 16 other disabled students living on the first floor of Nugent Hall have their own personal assistants—undergraduate students who work at least 18 hours a week, even weekends, in exchange for room and board.
Hiring and scheduling six or more assistants is a monumental challenge for the students with disabilities. Reassuring their worried parents can be another.
“My mom freaked out for the first month, and there was rarely a day that she didn’t call,” says Mr. Kullander, who has close-cropped, dark hair and a dry sense of humor. “I was really excited to be here and to be independent. At home, I have almost a psychological dependence on my family.”
Not so in Nugent Hall, which opened in August, the first new dormitoryresidence hall on the campus in more than 40 years.
Each of the rooms on the first floor, which houses 17 disabled students and three personal assistants, has adjustable hospital beds and high-tech accessibility features. The rooms have a motorized ceiling-lift system, which some of the students use to move from their beds to their bathrooms. Students slide or are helped into a sling suspended from the ceiling; then, with a remote-control device, they or their assistants activate the lift, which runs along tracks built into the ceiling.
The building is designed to integrate students with and without disabilities. The top three floors include disabled students who are able to live more independently, as well as students without disabilities, and both groups share the dining hall. A cardio room includes exercise machines that a student can use from a wheelchair. Buses stop at the dorm every half-hour during class times to take students anywhere on the campus.
Adapting to this environment wasn’t easy for Mr. Kullander. Although he has lived with his disability since infancy, being surrounded by similarly challenged students took some getting used to, he says. None of his friends at his high school, in the Chicago suburb of Libertyville, which he describes as “very inclusive,” were disabled.
“It was a little weird at first, seeing all these people in wheelchairs,” Mr. Kullander says. But in a way, it was nice to be able to discuss physical challenges with classmates who could relate. “Everyone here was very open and talked freely about things that I considered taboo in high school.”
The university prepared him for the unexpected as well. For example, when a personal assistant isn’t assigned to him and he drops a book, he can use a wireless pager to summon an on-call student. Such systems, which reduce worries about physical limitations, allow Mr. Kullander to concentrate on studies that he hopes will lead to a career as a high-tech expert or a government analyst.
Empowering Students
The Illinois program is also helping many of the 70 personal assistants get professional experience as caregivers; a number of them are pursuing degrees in health-related fields. After they are accepted into the program and trained, their names and contact information go out to the disabled students, who are responsible for interviewing, selecting, and scheduling them.
The disabled students, all of whom use power wheelchairs, can have up to five hours a day of assistance.
“The students are pretty traditional—most are 18- to 22-year-olds who are leaving home for the first time,” says Patricia B. Malik, director of the Beckwith Program, which began in 1982 and is named for the older, accessible dormitory that preceded Nugent Hall.
The program provides lessons inon self-advocacy to help students manage their newfound independence and get the support and living accommodations they deserve, she says. They learn from other students in the program. For instance, returning disabled students mentor the new ones and help them learn strategies to manage their health-care needs, including, in some cases, showering, using the bathroom, and getting in and out of bed.
‘Only Easy Day Was Yesterday’
Stephanie Zaia, a 21-year-old sophomore, spends much of her time propped in bed, surrounded by pillows that support her frail body. She looks up with a smile from her laptop and speech-therapy textbook to summon a visitor into her room.
If she hadn’t discovered the Beckwith Program, she says, she’d still be back home in Massachusetts with protective parents, who hated to see her move so far away.
“There’s no other campus that has this kind of setup,” she says. “I visited another campus, and the tour guide didn’t even know where the ramps were.”
Ms. Zaia speaks matter-of-factly about the devastating medical setbacks she has lived through over the past several years.
A competitive swimmer until age 14, she developed dystonia, a neurological disorder that results in uncontrollable movements and abnormal body postures.
She uses a motorized wheelchair but has to be in a reclining position, which makes seeing where she’s going difficult. She relies on her dog, Izzie, the companion she trained to turn on her lights and open her door, to help her navigate her way to class.
On her wall is a calendar color-coded with the appointments of all of her personal assistants. While she loves the relative independence of being away at college, she is keenly aware of how much she relies on others: “I have to trust the person who comes so I can get to class on time. I have to rely on other people for everything.”
A T-shirt bearing the Navy Seals slogan “The Only Easy Day Was Yesterday” is framed on her wall, a gift from one of her doctors.
Going away to college was a simple decision for her. “I was all for it,” she says with a smile, in a rapid-fire voice that is slightly slurred from the effects of the disease on her vocal cords. “If I came here, I’d have the freedom to go anywhere on my own. Are you kidding?” she says, her eyes widening. “I can go to the mall without asking my mother for a ride? Sweet!”
She hopes to become a speech therapist or other community-health professional: “I want to be in the work force, and I won’t get there lying in bed.”
Ties That Bind
Kelsey Rozema, a 19-year-old freshman from New Lenox, Ill., has a condition commonly referred to as brittle-bone disease. She has had more than 300 fractures and 14 surgeries, and struggles with chronic back pain.
Ms. Rozema, who hopes to become an art dealer, juggles a schedule of eight or nine personal assistants.
Because she is an only child, the move has been tough on her parents, but she says she’s happy.
“I get homesick once in a while, but mostly for random things, like my dog,” she says. “I feel very safe here, and I’ve gained confidence.”
Arek Sierant, a 20-year-old junior who lives on the first floor of Nugent Hall, is one of the assistants who helps make that happen. He works 35 hours a week, and like other assistants, he earns $8.50 an hour once he has worked the mandatory 18 hours. But he often helps out when he’s off the clock, frequently jumping up from his desk to give a hand to hallmates who have dropped a paper or the phone.
He learned about the Beckwith Program from a friend who worked as a personal assistant during his freshman year. Since joining the program, Mr. Sierant has begun exploring careers in community health—his major—or physical therapy.
The best part about his job, Mr. Sierant says, is that “I get to live with these guys, who are some of my best friends.”
