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Greg Bedan is among a small group of people who were enrolled in the National Spinal Cord Injury Model Systems Database in 1973, the year it was established.
The database is a repository of information collected from people with spinal cord injury (SCI) across the country. The goal of the database is to provide insight into the short- and long-term outcomes for people with SCI, identify trends over time, establish expected rehabilitation outcomes and facilitate research that can lead to better outcomes. People are enrolled at the time of their injury at one of the Spinal Cord Injury Model Systems in the U.S. including the Midwest Regional SCI Model System at Shirley Ryan AbilityLab. Enrollees are followed up every five years to gather longitudinal data. The database currently holds information from 36,500 people with SCI.
Bedan, 62, sustained a neck injury while playing football in his sophomore year in high school in Greenwood, Indiana. He was the captain of the team and aspired to play at Notre Dame, like his father. At 15 years old, he was paralyzed below his arms.
Bedan spent three months at Indianapolis Methodist Hospital just after his injury and the following six months at the Rehabilitation Institute of Chicago, now Shirley Ryan AbilityLab, where he received physical and occupational therapy and participated in group therapy. He also learned how to use a manual wheelchair which is what he has used since his accident.
He credits strong support from his family -- his mom and dad as well as his older brothers Jack and Kevin and sister, Kathy -- in getting him through that first year and the years that followed. Not only did his family support him, they also gently pushed him to engage and continue his education.
“I wasn’t just sitting around. That was not part of the plan,” he says emphatically.
After leaving the Rehabilitation Institute of Chicago, it was right back to school. “I didn’t want to finish high school, but my parents really gave me no choice,” Bedan says. Returning was a struggle, but he focused on going to college. His older brother went to Indiana University in Bloomington, and considering it was also only an hour from his home, he applied and was accepted.
Bedan faced new challenges when he arrived on the campus. “In college, I had to take more control. At home my parents were my caregivers but now I had to hire an attendant and depend on them for helping out,” Bedan explains. “There was a bit of a learning curve, or baptism by fire, but we figured it out.”
Bedan graduated with degrees in telecommunications and history, with a minor in marketing. After a stint in Chicago as an intern at WIND radio, he moved back to Bloomington to finish his master’s degree in foreign policy with a film and video minor. In 1989, he moved to Indianapolis where he has lived ever since.
Bedan worked in several fields over his 30-year career, serving in leadership roles in communications, politics, transportation, community outreach, public affairs, marketing, sales, development and in the tourism industry. His employers have included the Indiana Department of Education, the Indiana Department of Commerce, the Indianapolis Symphony Orchestra, and the National Disabled Water Ski Championship among many others.
In 1993, he was in the middle of building an accessible house he designed in the Indianapolis suburbs, but the commute to and from Indianapolis where he worked in the Department of Commerce as tourism development director, was getting old. Bedan, who drives a van he transfers into and out of independently, was tired of fighting traffic five days a week.
Almost by chance, he found a condo in an old church closer to downtown and his office in the State House where he worked. “I don’t know who the developer was, but they actually used universal design and I had to do very little to make it more accessible,” he explains. The condo has been his home ever since. He lives by himself and has an attendant come in five days a week to help him out.
Today, Bedan is program manager in the Indianapolis Mayor’s Office of Disability Affairs but says he originally shied away from the disability career path. “I didn’t want my injury to define me,” Bedan says. “The disability field wasn’t my interest before I got injured and it wasn’t when I started my career.” Now he enjoys consulting on issues around accessibility and ADA compliance and responding to constituents’ needs and concerns.
When asked, Bedan says his disability is “still a thing.” But over the years things have gotten better. “Manual wheelchairs are much lighter now,” he says. Despite some shoulder pain he attributes mostly to aging, he is hesitant to buy a power chair, especially because he travels extensively. “Airlines really beat up power chairs, and they are really expensive.” Electric and manual wheelchairs aren’t allowed in the cabin and are stored as cargo during flights.
When he’s not working, Bedan competes in hand cycling races, but the shoulder pain is getting worse. “I’m doing things with my arms that they weren’t meant to do.” He admits that a power wheelchair may be in his future but not right now.
Looking back and looking toward the future, Bedan points to something his parents told him right from the beginning. “I try to stick to their philosophy that can be summed up as ‘work your ass off’.”