By Bonnie Adams, Managing Editor
Photo/submitted
Westborough – Like many girls her age, 13-year-old Melissa Shang, an eighth grade student at the Sarah W. Gibbons Middle School, has a busy life. Her days are filled with school work, creating stop-motion films, singing in her school choir, and enjoying time with her family and friends. She is also, she admits, “sassy” a lot of the time. But there is also another side to this young girl – she is a passionate advocate for those with disabilities.
Melissa, who, with her family moved to Westborough last year from Pennsylvania, was born with a form of muscular dystrophy called Charcot-Marie-Tooth. It affects her mobility so she gets around a good part of the time in a wheelchair.
“But that’s not the main thing about me,” she said. “I don’t wake up first thing in the morning and think about it. I think about what I need to do that day, my friends, or boys my friends and I have crushes on.”
Her journey as an advocate started a few years ago, when she was 10 years old. As an avid fan of the popular American Girl dolls, she was dismayed when she could not find a doll that she could really relate to. So with the help of her older sister, Eva, she launched a viral petition requesting that the company consider making a doll with a disability. Although her efforts caught the attention of many major news outlets including Cosmopolitan, USA Today, and CBS, American Girl acknowledged her petition but did not pursue any further action.
Undeterred Melissa, along with Eva, continued to strive to bring awareness to the issue of disability. The two were featured in a TEDx Youth talk entitled “Why Girls with Disabilities Matter” and attended a Day of the Girl event at the United Nations in 2014. She was also invited to introduce Nobel Peace Prize winner Malala Yousafzai at an event held at the National Constitution Center in Philadelphia.
Now, the sisters are actively pursuing their latest project, their recently published book, “Mia Lee is Wheeling Through Middle School.”
The book, Melissa explained, is fiction loosely based on her own life. The main character, Mia Lee, is just trying to fit in and make new friends in her new school. She also happens to be in a wheelchair.
“But that’s not the focus of the book,” Melissa said. “It’s just part of who she is.”
Mia Lee, (like Melissa) enjoys making stop-motion films. As such, she decides to run for Video Production Club President but suddenly her campaign posters are missing. She sets out, with the help of her friends, to prove that the culprit is her opponent for president, the school’s “certified Middle School Mean Girl,” Angela Vanover.
“I have not seen many books with girls like me so I thought why not tell my own story?” Melissa said.
“Some people thought the book should be more ‘pitiful and sad’ but that’s not who Melissa is. She’s a normal girl who goes through a lot of what other girls her age go through,” Eva said. “She just happens to have a disability but that is not all she is about.”
To raise funds to publish the book, the girls created a Kickstarter account.
“Our goal was $2,000 which we got in 24 hours,” Eva said. “We raised just over $6,000 which allowed us to hire an editor and illustrator.”
The first book signing was held at a reception in August at the National Youth Transitions Center in Washington, D.C.
Although there is an age gap of seven years between the girls, it is evident that their bond is very special and that they draw strength and inspiration from each other.
“She’s great, she is always so supportive and always helps me,” Melissa said of Eva. “We’ve gone through a lot together.”
“When Melissa was at the United Nations she was in her wheelchair in a special section. A diplomat came up to her thinking she also must be somewhat important and asked who she was. She just said so calmly, ‘I’m Melissa!’” Eva recalled. “She wasn’t nervous at all about being there.”
“She always has a calmness and confidence no matter if she is at a book signing, or at the UN,” she added. “That’s just one thing of the things I love most about her – that unflappable confidence.”
Going forth, Melissa hopes to continue writing more books. She also hopes, she said, to be an inspiration to other kids, disabled or not.
“I just want them to know that just because you have a disability, doesn’t mean that you don’t have the same thoughts and feelings that other kids have,” she said. “A disability is just part of you but it’s not all you are.”
The sisters will be holding a book discussion for kids and adults at the Westborough Public Library on Saturday, Nov. 5 at 2 p.m. “Mia Lee is Wheeling Through Middle School” is now available for purchase at Amazon. Visit melissashang.com for more information.
