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Of the approximately 2.5 million podcasts produced in the United States, there are none that specifically speak to children with spinal cord injuries. Until now.
“I Was a Wheelchair Kid” is a new podcast produced by FacingDisability.com and the Midwest Regional Spinal Cord Injury Care System (MRSCICS) at Shirley Ryan AbilityLab. The podcast is supported by a grant from the National Institute on Disability, Independent Living and Rehabilitation Research and the Hill Foundation. It features the true stories of people who grew up using wheelchairs after spinal cord injury.
The podcast released the first five episodes on August 26.
“In each episode, someone who was injured as a child, who is now an adult, talks about their childhood experience growing up using a wheelchair,” says Thea Flaum, President of the Hill Foundation, which created FacingDisability.com, a resource for families facing spinal cord injury. “We realized that while there are plenty of podcasts for kids and teenagers, none focused on the unique experience of growing up in a wheelchair. The teenage years are very hard. And a teenager who has a spinal cord injury and is trying to navigate high school, faces a whole separate set of problems. We wanted to create these episodes so teens who are navigating these same challenges, could learn about how others navigated their adolescent years.”
The target audience for “I Was a Wheelchair Kid” is newly injured tweens (10 to 13 years old) and teens (13 and older).
Flaum, who sits on the Advisory Council of MRSCICS, suggested including the podcast in the renewal grant for MRSCICS (the center applies for and receives new funding every five years) to inform young people about living with a spinal cord injury. The MRSCICS grant, requires the inclusion of an outreach project. The grant also supports scientific research and the enrollment of people with spinal cord injury into the National Spinal Cord Injury Model Systems Database.
“We worked with Thea and her team at FacindDisability.com before on a previous MRSCICS grant to develop “Voices of Experience,” a series of video interviews with people with spinal cord injury sharing their stories,” says Allen Heinemann, PhD, co-principal investigator of MRSCICS. “When Thea suggested a podcast series for teens and younger adults, we were enthusiastic about including it in our renewal application and excited to work with again Thea with her television background and ability to help people tell their stories,” explains Heinemann, who is also Director of the Center for Rehabilitation Outcomes Research at Shirley Ryan AbilityLab.
In order to develop stories for the podcast, Flaum and MRSCICS held a focus group of ten participants - five clinicians from Shirley Ryan AbilityLab and Shriners Hospital for Children experienced in dealing with pediatric spinal cord injury, and five people, now adults, who had been injured as children.
“We were hoping to gain insights into the questions and concerns that occupy the hearts and minds and hopes of young people faced with having to navigate their teen years in a wheelchair,” says Flaum.
Focus group members were asked things like, what were the barriers – real and imagined – to returning to school? What was your greatest fear after your injury? What pre-injury friends stayed and who didn’t? What were the most important factors in helping you adjust? How did you feel about dating post-injury?
The results of the focus group led to the development of episodes focused on : how to be “normal” again, how to make and keep friends, dating and sex, handling bowel and bladder problems, and returning to sports.
The FacingDisability.com team produced and released the first five episodes and plan to produce additional episodes with personal stories. Some new episodes will also feature spinal cord injury experts talking about outcomes for people who were injured as children. “We want listeners to hear from experts about research into the trajectories for people with pediatric spinal cord injuries,” says Flaum. “What kind of educational degrees do they attain? Do they get married, do they have children, how are t they employed?”
You can listen to “I Was a Wheelchair Kid” on Apple, Spotify, YouTube, Amazon Music or at FacingDisability.com/podcasts.
Below are descriptions of the first five episodes:
Episode 1: Jorge: “Finding Normal”
Jorge was nine years old, and playing at a friend’s house when one of the kids suddenly brought out a real gun.
Episode 2: Allison: “Losing Friends and Finding New Ones”
After a skiing accident left her paralyzed, 16-year-old Allison focused all her efforts on getting back to her old friends at school. But when she finally got there, things were not at all as she expected.
Episode 3: Bill: “The Bully Who Changed My Life”
Injured as an infant, Bill was used to finding his own way in the world—until 4th grade, where he met a bully who made his life miserable…every single day.
Episode 4: Aric: “Leader of the Pack”
Aric was paralyzed in a swimming accident when he was 14. He had been a natural leader before his accident, and continued to take charge from his wheelchair. He was never excluded because he simply wouldn’t let that happen.
Episode 5: Annie: “Miss Independent”
Annie had a spinal stroke the night before seventh grade. When she got back to school, she had to wear a surgical halo to stabilize her spine.