Move Over Junie B. Jones, A Heroine in Leg-Braces Bursts on The Literary Scene

Not many fourth-graders don purple leg-braces for school. For literary heroine Arlene Harper, of “Arlene on the Scene” leg-braces are a fact of life due to Charcot-Marie-Tooth (CMT), a progressive neurological disorder.

Recently, hundreds of Port Washington students were introduced to Arlene and CMT, a relatively unknown disease, by her creator, author Carol Liu, at a series of assemblies across town and at a Feb. 4 book signing at .

For author Liu, CMT and its debilitating effects has personal resonance. Liu’s close college friend and young daughter have the condition. The two women were bemoaning the lack of familiarity with the disease when inspiration for "Arlene on the Scene" hit. “We said we have to raise awareness, especially among kids,” Liu noted. “We said, ‘There should be a Junie B. Jones in leg braces.’”

One young book fan, Alexa Queen, aged seven, came to Dolphin Bookshop expressly for a copy of the book featuring a girl, who like herself, has CMT.

Alexa's mother Allison Queen made the trip from West Islip, so Alexa could see herself represented in popular literature and in hopes of connecting with other children with CMT.

“It’s very important,” Allison Queen said. “She [Alexa] loves reading and we don’t know any kids with CMT.” Alexa is a budding CMT-advocate herself, creating a pumpkin decorating booth at her elementary school that raised $725, mostly in small change, for advocacy organization CMTA.

Liu is now touring with her book, conducting assemblies for third, fourth and fifth graders that use “Arlene on the Scene” as a springboard for talking about diversity, disabilities and the differences that define every individual. All five-district elementary schools participated in the author assemblies, as did

“It’s not about erasing differences – it’s about embracing them," Liu said, adding that the students were attentive, engaged audiences.  “You get such good questions. You can see the wheels start to turn.” 

Liu and her friend collaborated on the book, which was funded by the Hereditary Neuropathy Foundation (HNF), a CMT-advocacy organization. All proceeds from the book’s sales benefit HNF. HNF founder and CMT advocate Allison Moore said the Port Washington efforts are only the beginning.

“We’re going to continue to do school assemblies," Moore said. "We have a teacher’s guide that can be downloaded for free from our website.”

Mother Amanda Hill was at Dolphin Bookshop at the behest of her third-grade daughter. “Kayla heard about the book at school and said we have to get this book,’” Hill said. “We’re getting one for a friend’s birthday as well.” 

While proceeds benefit HNF, Liu sees “Arlene on the Scene” as more than just a tale about a girl with a specific condition. Protagonist Arlene doesn’t want her classmates to label her as just the “girl with braces” but realizes she too falls prey to making snap judgments and tagging her peers with unkind labels.

“We talk about the difference between sympathy and empathy,” said Liu. “Put yourself in their shoes.”

librarian Janet Moser believes that author assemblies bring books to life. “We seize the opportunity,” Moser said. “It makes it real to the kids. It’s not just a book sitting on a shelf.”

Book sales and an evening fundraiser at raised $2,500 for HNF.