Not afraid to talk about it

"Can I catch it?" "Does it really hurt?"

The questions came, one after another, at the fifth-grade assembly — not malicious, but naive, potentially embarrassing and very personal.

Kelly Matula '09 wanted to answer them.

Matula, who has cerebral palsy, has been asked about her disability by her peers ever since she can remember. Rather than shying away from these queries, however, Matula has emerged as an advocate for others in her position.

"I thought the assembly would be a good idea because it's important to get kids comfortable with asking questions while they're still at a young age," she said. "Kids are naturally very curious, and if you don't answer their questions, they will come up with their own answers in their minds."

Matula's condition, which is caused by brain damage early in life, means she has abnormal muscle tone and control. Though she is mobile and able to function independently, the disease makes it difficult for her to perform more physically taxing movements such as climbing stairs. She also has impaired vision.

The fifth-grade assembly was only one instance of Matula's eagerness to share her experiences with those who do not understand disabilities and with those who face them. As a high school junior, she started disabledstudent.com, an informational website that describes disabilities and the challenges and opportunities that disabled students may encounter in their lives.

With the website, Matula said, she hopes to let disabled children know that it is still possible to find joy in life while living with a physical impairment.

On the website, there is a link for readers to submit questions to Matula and to her parents, who are both doctors. In addition to letting disabled students gain further insight into their condition, the site allows non-disabled students to ask questions that often arise when they are around a disabled peer.

"As a kid, I had a positive experience growing up," Matula said. "I want kids with disabilities to have just as good of an experience as I had."

While in high school, Matula visited elementary schools and arranged assemblies with the students. She also volunteered at a camp for the blind and visually impaired and worked as a therapist's aide at a children's rehabilitation hospital where she had previously received therapy herself for her disability.

Growing up disabled

Matula's desire to serve as an advocate for those with disabilities stems from her experiences as a young girl.

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Enrolled in mainstream schools since kindergarten, Matula overheard her peers whispering and knew that her classmates did not understand her and what she was going through.

When Matula was a fifth-grader, her gym teacher overheard students asking one another why she acted differently.

The teacher then met with Matula and her parents and suggested that she lead an assembly in which her peers could ask questions about her disability.

Kelly's father, Joseph Matula, said in an email that people are able to see the true Kelly when they are able to get their questions answered.

"I have seen that the less discomfort people have, the more they are allowed to express normal curiosity and ask questions which allow them to learn about who Kelly really is," he said.

Adjusting to Princeton

Maureen Matula, Kelly's mother, said in an email that her daughter has grown up knowing that the most limiting thing disabled people face is an attitude of defeat. When Kelly was young, many adults assumed that she could never be independent or achieve academic success. Yet, she added, her daughter disregarded such people's pessimistic outlooks and disproved their predictions.

Matula's roommate, Li Deng '10, said in an email that despite the many hardships she faces, Matula still is thankful for the blessings in her life.

"It was a beautiful Saturday morning last semester when Kelly and I went to the public library together and then to the record exchange," Deng said.

"On our way, I found out about all her surgeries that she had throughout her life, and yet, Kelly wasn't at all bitter or self-pitying when she spoke of her experiences. She was instead so excited that she and I were spending time together after a very long week and that we were going to get books and buy music."

"Having cerebral palsy makes Kelly's life very different from that of other people," Deng added. "It is more difficult for her to do things that most people take for granted. For example, Kelly has a visual impairment, and being an English major with an enormous amount of reading requires her to spend much more time working than most people would imagine."

"But she perseveres, often late into the night, and amazes me by how well she does in her academics."