I will grab life by the horns and make it mine

Photo of Kyle Romano
Photo of Kyle Romano
“I will grab life by the horns and make it mine” The title of this article was taken from a poem, “Romantics” written by Kyle Romano, a quad-amputee. “Although most view my situation as pitiful, I have never, and will never, regard it as such, Kyle said. “I am actually thankful for the situation that I have been put in because it has allowed me to view life from an altered perspective, making me a stronger person.” Kyle’s interest in writing took hold in high school where he was on the staff of the school newspaper. In addition to poetry, Kyle is also working on a novel. Regardless of the type of writing he is engaged in, Kyle’s purpose is “to help others gain a different perspective on life and realize that a strong person controls their own life as opposed to allowing it to be controlled by others.”

“Above all else I consider myself to be a writer,” the thirty-one-year-old said. “That’s what I went to school for and it is something I’ve always been passionate about.” Kyle’s venture into poetry writing began as a method to create song lyrics. Beginning in high school he and his brother, Kent, who is 2 years younger, have played in a band. “Kent plays the guitar and sings a bit. Our close friend Alex plays bass and I sing. The three of us write music together. Although we still share the common bond of music, Kent is going to school to be a physical therapist so we don’t have as much time as we once did.”

Kyle believes the experiences he and Kent shared while growing up influenced his brother’s decision to pursue physical therapy as a career. “I was constantly in PT and OT and Kent was usually there with me,” Kyle said. “He had the opportunity of seeing the impact therapists had on my life and he had the experience of interacting with other children with disabilities and their siblings. If Kent could give one person a fraction of the independence that my therapists had given me by the time I was an adult, for him that would be the ultimate goal.” In addition to the close relationship with his brother, Kyle has been touched with the support of a close knit, empathetic extended family. “My dad’s family is Cuban American and we’ve stayed close together – aunts, uncles and cousins. They have all played an instrumental part in my life. Throughout my life everyone has always been there for me.”

When Kyle was a year old his parents realized he had a fever and was restless in his crib. “My mom picked me up and when she lifted the back of my shirt she saw that my back had turned black and blue. They rushed me to the doctor and it was eventually determined that I had meningitis. Amputation of my arms and legs was the only option to save my life.”

Kyle acknowledges how difficult this experience was for his young parents. “The support of our extended family was very important to all of us,” Kyle said. “They not only helped in the sense that I needed physical help, but it was so nice to have that emotional support of a family unit. My extended family helped me to become comfortable with myself and with who I am. I knew that I was different but they never treated that as a negative.” Kyle acknowledges that he is thankful that he contracted the disease when he was very young. “Instead of having to relearn everything, I grew up this way. I never really compared or thought to compare the way I navigated the world with the way my brother did. We’ve always been very close and he has always been an integral part of my life, but we just each had our own way of doing things.”

A self-described nerd, Kyle started playing video games at the age of three - at the same time he got his first power wheelchair. “I had an original Nintendo entertainment system and my dad bought an arcade-style joy stick for me. That joy stick was very similar to the joy stick on my wheelchair so it was an easy transition. As I grew up this was a way for me to play with my friends on the same level. That was very powerful because it put me as an equal to my able-bodied friends.”

Kyle and his friends also played football and baseball modifying the rules so Kyle could compete. “Video games were the first space I could navigate independently!”

Kyle wrote his Master’s thesis on accessibility in video games, or “Gamers with Disabilities” and he is a competitive gamer on Nintendo’s “Super Smash Brothers.” Kyle supports a Tampa organization, Gamers on the Edge, owned by his friend, Angel Miranda. “I go as often as I can and have made some very good friends at these events. Angel hosts weekly tournaments and a couple of larger regional tournaments. Proceeds from the tournament entry fees go to Children’s Miracle Network hospitals, specifically All Children’s Hospital in the Tampa Bay area.” Kyle personally identifies with the work of this non-profit group because he believes “they are helping kids who are going through the same challenges that I did. Video games were a resource I relied on for many reasons and I know how important they can be. I still complete when I have time but we all grow up and have to work!” Indeed Kyle’s life isn’t all music, poetry and video games! He received his undergraduate degree and his master’s degree from the University of South Florida in Tampa. Through a series of events during his graduate degree studies, Kyle found himself working alongside a friend and doctoral student, Lindy Davidson (Now Dr. Lindy Davidson). The duo shared an interest in exploring how our culture handles disability and how society comes to know people with disabilities through television, music, books and other media. “We focused on media representation of people with disabilities and how we could give our students the tools to know acceptable ways to represent people with disabilities and the appropriate way to talk with people with disabilities versus what is inappropriate,” Kyle explained. “We created and taught a class called “Communication and Disability.” It was a higher level elective that met the requirement for students pursuing a bachelor’s degree in communication. “Most of our students were able-bodied and with them we challenged the dominate narrative of people with disabilities as being weak and unable to contribute to society both monetarily and intellectually.”

While Kyle’s experience with the creation and implementation of this particular class offering was fulfilling, he describes his personal education experience as difficult. “I wanted to learn about disability and language, but as I sought help in pursuing this subject I realized most people didn’t understand what I wanted to study. I went through a period of time when I wasn’t even sure I wanted to study disability,” Kyle said. “I was fortunate to find a great professor who specialized in health communications. Dr. Ambar Basu told me he didn’t have any experience in studying disability but he was ‘more than willing to learn with me.’ Dr. Sara Green in the Department of Sociology was also very supportive in helping me figure out a plan of study. These two were instrumental in helping me realize the confidence to actually pursue what, until working with them, had only been an idea.” Now Kyle has combined his education, life experiences and an innate talent for effective communication to fill a pivotal role with Custom Mobility, a provider of complex rehab equipment. What began as an informal discussion with Bruce Bayes, CEO of Custom Mobility has developed into niche marketing responsibilities for the company.

“My first relationship with Custom Mobility was when I was three years old and received my first power chair. My job now is to manage social media content for the company and write a blog for the company’s web site (https://www.custom-mobility.com/blog/),” Kyle said. “I have also developed and oversee a student intern program at Custom Mobility. Working my old friend and colleague, Dr. Lindy Davidson who is now visiting faculty at University of South Florida in the Honors College, we are identifying students who have experience with people with disabilities or have an interest in this population. Those chosen for an internship work with various departments at Custom Mobility and through this experience gain an understanding of all that is involved with getting clients the equipment they need.” Interns are asked to create a presentation that compares their perception of complex rehab technology at the beginning of this experience with their understanding once their internship is finished. Recently Kyle joined other CRT leaders and advocates in Washington, D.C. to help educate members of the House of Representatives and the Senate regarding complex rehab technology issues.

“It was very impressive and humbling to actually be in the buildings where our government makes important decisions,” Kyle said. “This was my second year to make this trip. The experience is very grounding and it was made even better because we were there to try to make a difference in the lives of individuals with disabilities.” We can all learn from Kyle Romano’s example of thoughtful determination to impact the lives of others. He has shown us all how to “grab life by the horns” and make it our own.

Kyle may be reached at kdr@custom-mobility.com. Kyle is a consumer advocate who works for Custom Mobility in Florida.

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