Abilities > Disabilities

By Katie McPherson

James was born with a condition called tracheoesophageal fistula, which poses a choking hazard and causes reflux and other digestive issues. He uses a feeding tube to supplement his usual meals and provide his body the necessary nutrition. A button-sized port near his waist connects to a pump, and he usually uses it while sleeping.

Anyone who has the pleasure of meeting James understands quickly he’s a remarkable person. He was in Air Force ROTC in high school, participated in fencing, has worked on multiple political campaigns and loves swimming and traveling. He’s even run for Supervisor of Elections in Marion County twice. But it’s important to know he’s not remarkable in spite of his feeding tube—he’s remarkable because of it.

“They see how active I am, and they say ‘you don’t look sick, you look healthy.’ That’s one of the misconceptions,” James says.

“What people don’t realize is that because of the feeding tube he’s able to get the supplements he needs and do these things,” explains his father, Butch.

James’ parents taught him early they couldn’t be around 24 hours a day, and he learned to be his own self-advocate.

In high school, his teacher (aware of his condition and how to assist in an emergency) was beginning maternity leave. James requested a day of the curriculum to educate his classmates on the same protocol so the rotation of substitutes wouldn’t leave him without help should he choke. He helped his school implement a policy for substitutes to receive a paper slip with information about the special needs of any students in the class. TSA procedure at Orlando International Airport was updated after they opened James’ sterile backup tube, ruining its usefulness. (He later needed it and had to rush to the hospital upon landing.)

Roughly half a million people in the United States rely on tubes for at least part of their nutrition. That’s why James has begun advocating for others and hopes to teach special needs students of all kinds in the near future.

“Right now I want to get my teaching degree started and teach special education and try to provide them the voice they don’t have and the tools I wish I’d had. In my 12 years in school, I only had one teacher I could really connect with. Other than that I was constantly advocating.”

His voice will soon be heard outside of Florida, too.

“In June I’ll be going to Connecticut and giving a presentation before the State Board of Health quarterly meeting,” James says. He has a similar trip to Rhode Island in the works and is in talks with a research hospital in Chicago as well. While James and his family work toward easier days for students like him, he says it’s important for them to advocate for themselves every day and explain their needs thoroughly.

“I’ve always been open about my medical condition. These people are supposed to provide me services, but in order to get them, I have to tell them everything. Don’t be afraid to stand up either.”

Check out these links for more information!

For general info, visit feedingtubeawareness.org