NEWPORT, Maine — As part of her senior project at Nokomis Regional High School, Megan Fowler asked a group of her teachers to eat a cup of jello using only their nondominant hand. While the adults seated around a table struggled to get the slippery substance onto their spoons, Fowler explained that as a person with cerebral palsy, this is what eating is like for her at every meal.
The 18-year-old from Etna explained that she was embarrassed to eat in front of other students, so she would take her lunch to the guidance counselor’s office, where her aunt works.
“Every day I used to eat lunch with my aunt in her office because when I eat in the cafeteria, everyone stares at me,” said Fowler. “I might shake and lose some off my spoon. … I have a hard time carrying my tray.”
As a freshman at Nokomis, Fowler was extremely shy. When she was bullied by other students — which she said happened often — she would endure it quietly, not wanting to draw more attention to herself. Her friends knew about her movement disorder, but she rarely explained it to those who weren’t close to her.
“You were happy to be a wallflower,” her teacher and case manager, John Hubbell, told her during lunch recently.
Hubbell said the students he works with have been protective of Fowler.
“People who take the time to get to know Megan look right past her [cerebral palsy],” he said.
Growing up, Fowler said other children threw things at her, mocked her voice and called her names such as “retard” and “half-brain.”
“It was absolutely heartbreaking,” said Amanda Smith, Fowler’s mother. “She was like, ‘I hate when people talk to me like I’m stupid. I’m not stupid.’”
Because of the cerebral palsy, which has caused her to lose some motor control, Fowler speaks slowly and carefully, spending time on each word to make sure it comes out correctly. But it has not kept her from achieving in school. She will graduate an honors student from Nokomis this week, having earned As and Bs in all her classes.
Smith said that while the bullying was going on, she offered to intervene on her daughter’s behalf, but Fowler always said no. Smith then encouraged her to educate people about cerebral palsy.
So, in her last year of high school, Fowler put the bashfulness behind her and decided to focus her senior project on spreading awareness about cerebral palsy. On April 2, she gave an interactive presentation about her experience. Empowered by the response from her teachers, she’s given the presentation many times since to groups of students and teachers at her school, in other schools and as a guest speaker at local events.
“I could see a change from the moment my teachers walked in to the moment they left,” she said of her senior project. “I could feel that they understood. They got it.”
A friend and classmate, Drake Thornley, accompanies her as an assistant when she gives her presentations to help her set up.
“It’s definitely something that people should know about,” Thornley said, explaining why he participates in Fowler’s work. “Spreading the word feels good.”
In addition to lots of encouragement from her mother, Fowler described several experiences that helped her decide to come out of her shell and talk about her disability publicly. An important one was when she studied sociology and psychology in school, which gave her a new perspective on the people who had bullied her all her life.
“I learned that they’re not picking on me because of who I am,” she explained. “They’re picking on me because they’re ignorant of my disability.”
Cerebral palsy is a neurological disorder that can occur when not enough oxygen gets to the brain. This can happen during a difficult childbirth or a bad car accident, Fowler explained. She has had the condition since she was a baby.
About one in 323 children have been identified as having cerebral palsy, according to the Centers for Disease Control and Prevention. It is the most common motor disability that occurs during childhood and its severity ranges dramatically from person to person. Some people with cerebral palsy may be confined to a wheelchair and unable to speak, while the effects of it are hardly visible in others.
In Fowler’s case, all four of her limbs are affected causing her to walk stiffly and haltingly.
Another pivotal moment for Fowler was when she was enrolled in Upward Bound, a summer program at the University of Maine for local high school students. At the start of the program, a teacher asked her to stand up and explain her cerebral palsy to her classmates.
Though she was so scared she was shaking, Fowler stood up and did it.
“After that, people started hanging out with me,” she said. “They helped me get my food at lunch. They found out it wasn’t a learning disability, it was physical.”
Fowler has explained her disability to many friends and strangers. When she is presenting to teachers, she gives them advice on how to help students with disabilities in their classes.
It’s important for teachers to know the limits of their students, she said, but also to know when to leave students alone.
“You want them to get that independence because you’re not always going to be there for them,” she said.
Teachers must also stop bullying when they see it, she said.
Fowler focuses on the bullying aspect of her experience when addressing students.
“I talk about what conformity is and about how once you break conformity, you can do it again,” she said.
She has set up a website and hopes to continue giving her talk indefinitely. Her next presentation is June 25 at Thomas College.
Despite the positive reactions she’s gotten from the presentation, Fowler said the bullying has not completely stopped, though her mother is not convinced that the more recent aggressions have anything to do with her cerebral palsy.
Fowler’s teachers are confident that she will be able to handle life after high school.
“She’s confronted her fears with a smile on her face,” said Shanann Cooper, an education technician at Nokomis.
“Honestly, I’m not worried about her,” Hubbell said. “It’s been very nice to see how she’s grown as a person.”