Novel portrays teen with disability as 'just a typical person'


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As a high school student, Sara Pyszka worked hard to be like other students even though her physical disabilities required her to use a wheelchair and a computerized voice mechanism.

She insisted that her personal aide walk a distance behind her on the Bethel Park High School campus, leaving her free to move independently between classes and interact with other students without adult supervision.

As a college student, Ms. Pyszka was determined to have the same experience as her peers, and that meant moving out of the dorms at Wright State University in Dayton, Ohio, where she majored in rehabilitation services, and into an apartment in her junior year, even though cerebral palsy prevents her from walking, talking or using her hands.

Now, she's hoping to get other young people with disabilities to see themselves living as typical teenagers and young adults.

Ms. Pyszka, 27, recently self-published her first novel titled "Dancing Daisies." It's about a 17-year-old girl who goes away to camp for the first time and experiences the freedom of living away from home, falling in love, and the ups and downs of friendship.

The main character, Brynn, like Ms. Pyszka, has cerebral palsy and uses a wheelchair and a computer to communicate.

It's not a story about the extraordinary, but rather the ordinary. And that's the point.

"I feel like all of the movies and all of the books that are about people with disabilities are about how they are overcoming their obstacles. And sometimes I think that's okay, but sometimes it gets annoying if you have a disability. I really wanted to write a book about somebody with a disability who makes mistakes, and falls in love and is just a typical person," Ms. Pyszka said in an email interview.

When she started the book, her main character was in a wheelchair. In the second draft, she decided to make the main character exactly like herself -- without the ability to talk or use her hands -- and using a motorized wheelchair and communication device.

"Somehow, the process became more about educating people about who I am, and what I go through everyday," said Ms. Pyszka, who lives in Wexford and is a self-employed consultant on disability issues.

But, she said, she allowed Brynn to have some experiences that she hasn't had and the character's adventures have taught her some lessons.

"She learns to stand up for herself. I learned from my character how to speak my mind and not be afraid," Ms. Pyszka said.

The book, available in paperback on Amazon.com and in a Kindle version, has struck a chord with some readers who have posted reviews.

"Not only is it a great story about the trials and tribulations of being a teenager, but it is also chock full of information about what it is like to have a disability," one reader wrote.

Stephen Bennett, president and CEO of United Cerebral Palsy, lauded Ms. Pyszka's book and the example she is setting for others.

"United Cerebral Palsy's mission is to help ensure that people with disabilities can live a life without limits, and Sara is living that mission every day," Mr. Bennett said.

"In a society that doesn't often include such characters in books, films and more, it is refreshing and inspiring to see an author do so. We need more authors and books like this."

Ms. Pyszka wrote the 350-page book with her DynaVox, the computerized communicator she also uses to speak. The DynaVox scans through lists of words and letters on a screen and Ms. Pyszka uses a switch controlled by her head to select those she wants to use.

"My favorite part of the writing process is the independence. Whenever I am writing, every word, and every sentence, and every paragraph, comes directly out of my mind," she said.

"I feel like writing is something I can do 110 percent by myself. That is a really great feeling and that's why when somebody tells me they like something I wrote, it is the greatest compliment they could give me," she said.

She started writing the book when she was 19 and went through three rewrites before contacting agents to find a publisher. She was able to present her work to a small publisher, but after six months of work, the firm decided not to publish the book. So she decided to publish it herself.

Bethel Park school superintendent Nancy Aloi Rose, who was Ms. Pyszka's principal in middle school and has kept in touch with her, said she is not surprised at the message in her former student's novel.

"She always wanted people to know that she is more than just her disability, that she is a fully capable, thinking, feeling human being in her body and in her wheelchair," Ms. Rose said.

While at Bethel Park High School, Ms. Pyszka programmed her DynaVox so that she could sing the national anthem at a high school basketball game and was later invited to do the same at Pittsburgh Pirates and Cleveland Indians games and to lead the Pledge of Allegiance at the 2004 Republican National Convention.

Ms. Rose said Ms. Pyszka gave a staff development presentation to Bethel Park teachers several years ago about students with disabilities.

"It was about respecting the individual differences of students with special needs and challenging teachers not to have preconceived notions about the capabilities of disabled students," Ms. Rose said. "She is an ongoing inspiration for me in resilience and courage."

Mary Niederberger: mniederberger@post-gazette.com; 412-263-1590.


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