Melissa Shang’s transformation from a quiet Pennsylvania fifth grader into a national disability advocate began with a battle over a doll.

Born with Charcot-Marie-Tooth disease, a neurological disorder that causes muscular atrophy in her legs and arms, Melissa wanted to see herself in her favorite toy. Almost three years ago, when she was 10 and her sister, Eva, was 17, they started a widely shared online petition asking the maker of American Girl dolls to design one with a physical disability and feature it as Girl of the Year, with an accompanying book.

Nearly 146,000 people signed the petition. American Girl, a subsidiary of Mattel, acknowledged the sisters’ request but turned it down.

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So, with Eva’s help, Melissa wrote her own novel, “Mia Lee Is Wheeling Through Middle School,” self-published in July and available on Amazon since last month. A doll may come later, but the book, the sisters say, is more important.

“When I was growing up, I never read any books where the main character was in a wheelchair like me,” said Melissa, now 13 and an eighth grader. “I wanted to change that.”

Even though the Census Bureau estimates nearly one in five people in the United States have a physical or mental disability, they are underrepresented in books and other media, said Rebecca Cokley, executive director of the National Council on Disability.

“A lot of children around the country who don’t feel like they fit in anywhere can feel they fit in in Mia Lee’s world,” she said.

Melissa and Eva talked to a few publishers, only to find that none shared their vision for the story. “They wanted (the sisters) to make it a pity party,” Cokley said. “Eva and Melissa’s book provides an optimistic view of life with disabilities. A realistic view.”

The sisters wanted to show that girls with disabilities care about and encounter the same issues as other girls, and that having a disability is a natural part of life, Eva, 20, said.

So they published the book themselves.

To pay for it, they again turned to the power of people coming together online. Their supporters did not disappoint. Contributors to their Kickstarter campaign tripled the sisters’ goal, giving more than $6,300 in January and February 2015. At that point, they started writing. They finished last September.

“Mia Lee Is Wheeling Through Middle School” is the story of a sixth-grade girl who is a stop-motion filmmaker and is campaigning to be the president of her school’s video production club. When her posters keep disappearing, she and her friends set out to prove her opponent is stealing them.

Mia uses a wheelchair and has an aide at school to help her, but, Melissa pointed out, “she doesn’t let her disability define her.”

Melissa, who also enjoys making stop-motion films, based the character on herself, although she says her life “isn’t as exciting.”

The sisters’ agent, Clelia Gore of Martin Literary Management, called them “very impressive young women who have a shared interest in being advocates for people with disabilities.”

“I think this is just one wonderful project of many to come,” she said in an email.

In the year after the sisters started their American Girl petition, they were busy advocating for people with disabilities. Melissa helped introduce Nobel Peace Prize winner Malala Yousafzai — shot in the head by the Taliban for pressing for the education of Pakistani girls — when she received the Liberty Medal in 2014.

Melissa was given a standing ovation when she spoke about living with a disability at the United Nations to mark the International Day of the Girl Child. She and her sister gave a local TEDx talk called “Why Girls With Disabilities Matter.”

Cokley, of the National Council on Disability, said she wanted to see more books like Melissa and Eva’s in the hands of not only children with disabilities but also those without — potentially, future employers who could benefit from learning early on about people with differences.

In early August, Cokley organized a release party in Washington for Mia Lee.

Melissa, Eva and their parents, Sue Liu and Cheng Shang, traveled from Massachusetts, where the family moved a year ago, to attend the book launch. Among the 50 guests were advocates for those with disabilities as well as a group of deaf women visiting from Ghana. The HSC Foundation, a nonprofit that works to improve access to health-care services for people with disabilities, was host for the party.

Melissa said she may eventually write a sequel, based on her experiences moving to a new state and school.

“Right now,” she said, “I’m just focusing on surviving eighth grade.”

© 2016 The Philadelphia Inquirer
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