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Disabled Students Declare Independence, by Design

Disabled Students Declare Independence, by Design 1

Adam Gerik for The Chronicle

In a new dorm at the U. of Illinois at Urbana-Champaign designed for students with physical disabilities, Leo Kullander (left) visits a neighbor, John Burton. "Everyone here was very open and talked freely about things that I considered taboo in high school," says Mr. Kullander.

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close Disabled Students Declare Independence, by Design 1

Adam Gerik for The Chronicle

In a new dorm at the U. of Illinois at Urbana-Champaign designed for students with physical disabilities, Leo Kullander (left) visits a neighbor, John Burton. "Everyone here was very open and talked freely about things that I considered taboo in high school," says Mr. Kullander.

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."

Comments

1. jfetter - January 03, 2011 at 04:41 pm

As someone with a disability, thankfully nowhere near as severe as those of the students in this dorm, it is hard to overstate the benefits of even partial independence in terms of self-confidence, improving one's professional prospects, and, ultimately, happiness and human flourishing. I happen to be blind, so it makes a great deal of difference to me whether I am living and working in an environment that I am able to navigate independently or whether I am perpetually dependent on others for transportation, for example. This program at Illinois seems to be a model worthy of emulation across the country, and it is a genuine shame that every single state university or, for that matter, any university over a certain size does not have something similar.

2. kherndon - January 06, 2011 at 08:07 am

Most incredible program I've ever heard of; thank you for sharing some GOOD news in this publication!

3. aketchum - January 06, 2011 at 08:24 am

It's wonderful to hear of such services being offered to this extent at U of Illinois. Edinboro University of Pennsylvania has been a leader in offering similar services to wheelchair-users for years through its Office for Students with Disabilities(OSD) (http://www.edinboro.edu/departments/osd/), making it possible for medically fragile students to attend a university far from home, but such programs remain very rare. Thank you for covering this story and pointing out advantages for all participants.

4. maxey - January 06, 2011 at 08:38 am

As a three time UI alum, I read this story with a great deal of pride. Congratulations to the folks in Urbana-Champaign for this most humane initiative.

5. 22086364 - January 06, 2011 at 09:21 am

Wonderful!

6. dziuk - January 06, 2011 at 12:03 pm

I would like to add a word of encouragement to these students. My wife of nearly 60 years and 81 years of age contracted polio in 1953 two years after we were married and had two small daughters.For six months my wife was in and out of hospials and rehabilatation. She has now walked with the aid of two full length leg braces and walking sticks for the past 57 years. I was a student at the time with no money. Since that time we have had five more children[we didn't plan for them we just didn't plan very effectively against them}.My wife has done her own housework with little outside help and we have traveled and lived in Europe for two years.She still does her own housework in a home designed to accommodate her handicap.Don't give up!pjd

7. dst1978 - January 06, 2011 at 04:58 pm

This is just an incredible story. A few of my friends work in special education at the secondary level, and this just makes me feel so happy that the kids they work with do have a chance for better acommodations in higher ed. This school goes above and beyond and I hope more take a cue here and begin to do more to attract great minds who just may need a little more attention.

8. uscali1 - January 07, 2011 at 05:50 pm

That is wonderful! How much better off are we as a country when we can utilize these bright minds. Why not put some money into projects like this, which make lives of handicapped people better and will enable more of them to remain independent, instead of having to shell out for welfare. It's a win/win. More places should do this.
Kudos!

9. katshoecraft - January 18, 2011 at 06:14 pm


I'm so impressed by this innovative building, it's technology and the program it houses. Most remarkable is the fact that it doesn't just serve the young, bright minds of those who happen to have severe physical disabilities. It also serves a small army of other people, including young students who get to learn about disabilities, develop self confidence, responsibility, trust and time management skills. They all experience interdependence and genuine trust; they mature as human beings. Those benefits extend to every familiy member related to the initially mentioned student. They too, develop or at the very least strengthen all of those skills. Let's hope that this program serves as a model and thrives, thus proving to other colleges and universities that it isn't just possible, it's time.

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