‘I am the way I am supposed to be’: A Grace College student shares her journey with spina bifida

Kyah Merritt has spina bifida.

Before she was born, doctors said she would never be able to do anything. And when she came into the world months later, she had a hole in her back. As she grew up, surgeries, leg braces, and medications were routine. Despite these hindrances, her parents considered her a gift and always provided a positive environment for her childhood.

“I have always known that I am the way I am supposed to be,” Merritt says. “My parents helped me be positive about it. They never discouraged me in the things that I loved.”

When she dreamed of being a ballerina, she was given a pink leotard and a tutu. When she showed curiosity about horses, her family found a way to take her horseback riding. When she realized her knack for writing, they championed her in writing and self-publishing the first book of a trilogy. And when she wanted to go to college, they helped her find a school with college disability services.

“I never felt like I was less than,” Merritt reflects gratefully.

When she graduated from high school, she was ready to launch into her college education. She joined what was called Summit Scholars, a program that Grace College offered at the time for students who wanted a college experience but didn’t have the time or ability to move to a college campus. Merritt began taking classes online through Summit Scholars and visited the Summit campus in Fort Wayne three times a year with the other participants of the program.

“I feel as though I was the person it was created for,” Merritt says. “I learned a lot, but it was always safe.”

Through Summit Scholars, Merritt thrived as she visited Grace College’s campus, attended Lancer games, interacted with professors online, and earned her bachelor’s degree in Ministry. Her dreams of a career in business administration began to blossom as she finished her college experience.

Merritt began applying and interviewing for different administrative positions, but to no avail. She was turned down for all of them. She started to wonder if her rejection was based on more than just her qualifications and resume.

“Yes, I know I look like I’m 12,” Merritt says. “And no, there’s nothing I can do about it.”

In October of 2017, Meritt’s career plans were forced to a halt when she discovered that she would need back surgery to deflate a pocket of fluid that was built up on her spinal cord. The following summer, she also received news that she wouldn’t be able to drive because of the way spina bifida affected her vision and reaction time.

While this news was a frustrating rut in Merritt’s progress, she didn’t give up her determination.

She started working jobs unrelated to her career, striving toward a higher position, but never given a chance. Since July, Merritt has been working at Sweetwater Sound as a receptionist. While she loves her work, she still aspires to have a career in administration. She knows that there is a lot of equality advocacy work to be done in the marketplace before the day she will walk into an interview and be evaluated equally among other candidates.

“I want students with special needs to be able to have the ideal college experience,” Merritt says. “I want them to have an adventure and develop problem-solving skills in a context where they always know that they’re safe.”

Thanks to Grace’s former Summit Scholars program, and its current college disability services headed up by Connie Burkholder, Merritt and many others are able to grow in a safe, encouraging environment.

According to Merritt, students with special needs have to work much harder than people without special needs to achieve the same goals and successes. She wants the coming generation to recognize that people with spina bifida are capable. She wants them to know how much people like her can do.

“We have a lot to offer,” she says. “And what we have to offer is so much greater than our vulnerabilities.”

Looking ahead, Merritt is excited to publish the next two books in her trilogy. She will continue to adjust to full-time work at Sweetwater Sound and never stop advocating for students and workers with special needs.

“We’re not as far in the process as we should be,” Merritt says. “But let’s make the best future that we can.”

Read more articles by Kyrsten Newlon.

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