Determination with Purpose – Life on Wheels with Shannon Calega

Written by Rosa Walston Latimer

After growing up in Pennsylvania, Shannon Calega moved to Florida, and her life blossomed. “I was not a fan of the snow and ice in Pennsylvania, and I also had to contend with the difficult physical terrain,” Calega said. “My aunt, Kathie Jenkins, my mother’s oldest sister, lives in Tampa, Florida, and, once we graduated from high school, she invited my older sister and me to live with her. She says that I exploded in a good way after I came to Florida! I am very appreciative that she was supportive of letting us figure out what we wanted to do on our own.”

Calega’s life drastically changed when she was six years old when she lost her parents. “My mother’s middle sister and her husband raised us and were our legal guardians. We grew up in a tiny Pennsylvania town. Our high school was grades 7 through 12 all in one, three-story building,” Calega said.

“Aunt Kathie had always made it clear that we were welcome in her home in Florida. So I came to Tampa between my junior and senior years of high school to take some college tours. I had never lived on my own and was hesitant to attend a large school,” Calega said. “I was also concerned about accessibility challenges. Plus, I can get lost in a paper bag! I have zero sense of direction, so that made me apprehensive about going to a college with a large campus.”

Once she entered the campus of the University of Tampa (UT), Calega declared, “I’m going here!” The beauty of the campus with Plant Hall, the stately, historic administration building, was impressive. “In addition to the campus’s physical beauty, the attitude on campus regarding accessibility cinched my decision. UT was the only college I visited where I was assured that my physical disability would not be a hindrance to my education,” Calega said. “The Dean of Students assured me that as long as I put the effort behind the academics, I would have no physical limitations.  I visited two other campuses and did not receive anything near that level of assurance and support. I was certain UT would be a campus where I could focus on my education and not worry about barriers. I didn’t apply to any other school for my undergraduate studies.”

Calega has a disability known as Osteogenesis Imperfecta (OI) and uses a wheelchair for mobility; therefore accessibility is a primary concern. “The collagen in my bones doesn’t develop correctly, so it is easy for me to have bone fractures and breaks,” Calega said. “I was born with OI and, although it is considered genetic, I am the first person in my family to have it.” Throughout Calega’s life, she has had well over 300 fractures. “Because of weak and soft bones, my arms are curved,” she said. “I have rods in my lower legs and wear full leg braces. I never could walk independently due to the risk of fractures.” The 39-year-old has used a wheelchair her entire life. “This is my normal, and I try my best not to let it stop me from whatever I want to do. I am very fortunate that I inherited my mother’s stubbornness,” Calega continued. “I have incredibly supportive friends that treat me like a regular person – because I am. When I am with them, I don’t think about having a disability.”

Calega realized at a young age that because of her circumstances, even though her family helped with her care, she and her sister were essentially wards of the court, and they didn’t have a secure safety net. “It was up to me, just as it was up to my sister, to develop the kind of life that I wanted,” Calega said. “I knew I had two choices. I could choose not to push myself and live without goals or direction. Or not! I don’t remember ever thinking that I would stay in bed or go to an assisted living situation. Instead, I believed that if my older sister could do something, I could too.”

A pivotal experience occurred in Calega’s life after her junior year at the University of Tampa. “I had gone to college thinking I would be a journalist. I thought I might be the next NBC Nightly News co-anchor,” Calega said. “However, that wasn’t in the cards for me. I was working in our Student Activities office, as the student coordinator of leadership programming, and began to receive positive feedback from participants and acknowledge that I was doing a good job. Before this experience, I never knew this type of work existed, but I realized my potential and got excited about the opportunities. I realized I wanted fervently to give back to an institution that had helped me truly live for the first time. I am very fortunate to have found a career that I love rather than feeling that I am just working to pay the bills.”

After earning her undergraduate degree at the University of Tampa, Calega attended the University of South Carolina, where she earned a Master’s degree in Student Affairs in Higher Education. “My time in South Carolina was a great experience,” Calega said. “With one exception, I served as a Hall Director for an all-female, first-year residence hall during that time. I don’t think I slept well the entire year!” After working in her career field at Pasco-Hernando Community College and at the University of North Carolina Charlotte, Calega returned to the University of Tampa in 2013 as Director of Leadership Engagement in the Office of Student Leadership and Engagement. “My current job is Director of Orientation and Family Engagement,” Calega said. “This position was created about five years ago, and I am honored to be selected as the first staff member to have the responsibility. At this time, we are contending with modifications required due to COVID-19, and that is a real challenge.” Calega’s role is critical in getting students back on campus, transitioning to college, and helping them, and their families, understand where to get help if they need it. “I am fortunate to have the capable assistance of five students working with me as interns and student coordinators.”

Calega is currently working towards a doctorate in Education for Higher Education Leadership from Maryville University. “This advanced degree is essential for me to continue to move forward in my career,” Calega said. “I have been inspired by our current Dean of Students. She is a strong leader and a positive example. I would love the opportunity to give students the same level of support that she shows. I am enrolled in a 32-month intensive online program, including my dissertation. There are days when I feel I won’t make it, but I’ll get through it. I get to sleep in December of 2021 when I’m done!”

While Calega may not currently have much time to relax, she knows the day will come when she can again be involved with her friends in activities that she enjoys. “Disney is only about an hour away, and, before going back to school, I enjoyed entering races there,” Calega said. “Their races are very organized, and they make sure that you feel comfortable participating as a wheelchair athlete. The races have themes such as Star Wars and Princess Marathon Weekend. I race in my manual wheelchair and have done two 5K races and one 10K. I am looking forward to getting back into racing and hope to purchase a hand-cycle once I am finished with my doctoral studies. I am also an avid movie fan, but that might be mostly because of the theater popcorn.”

For several years Calega has been working with a personal trainer twice a week to try to better maintain strength and build muscle mass. “If I build muscle, it will delay bone mass loss, just as with older individuals,” Calega said. “My personal trainer, Abbey Schultz, is amazing and dedicated to helping me be as strong as I can be. If I break a bone, she helps me work around it. When I have a new injury, we just roll with it!”

Calega used a manual wheelchair as long as possible to aid in building up bone and muscle. “The manual would be OK for about four weeks, and then I would break my collar bone, so I had to switch to a power chair, which is critical for my independence,” Calega said. “I live alone and do everything that I need to do myself. Although I have many friends who are always available and willing to help me, I would rather take care of a situation without asking for help.” Calega has the determination to endure the many fractures and broken bones she has experienced yet continue living the life she loves. “I could break a bone sneezing or just sitting, yet I could fall and not break anything. There is nothing that can be done with some broken bones. They just have to have time to heal,” Calega said. “In that situation, I practice self-care at home. If I break a shoulder blade or ribs, I have a back brace I can wear, and I take over-the-counter medicine for pain. I always need to be diligent to be sure I am not having trouble breathing. If I break a leg or an arm, I may spend four to six weeks in a cast. I’ve learned how to shower one-handed or with one leg outside the shower. The only thing that truly slows me down is if I end up in a body cast. With that, I would be lying down, so my choices are limited. This is my life. It is who I am, and I manage it.”

Shannon Calega is a consumer advocate who lives in Florida.