Welcome back to Inspiring stories! In this Series, we meet special people from all around the word, sometimes dealing with CMT, sometimes not, always “inspiring”.
The posts of this series are among the most read in the whole website and some of my preferred articles. So I am particularly glad this week to interview not just one special person, but two: Marybeth Sidoti Caldarone and Carol Liu.
Together they are the authors of “Arlene”, the fortunate series of children’s books. This time the hero—or should I say the heroine—isn’t a young mage or a hunter from an outside district. In fact, she’s – guess what? – a kid with Charcot-Marie-Tooth. Nevertheless, Arlene could win mages and hunters in any competition. She’s Arlene the Rebel Queen and you are going to love her.
Can you tell us something about yourself and your connection with CMT?
Marybeth: I live with CMT and so does my daughter Grace. Like many others, I was not diagnosed with CMT at first, but was rather told that I had “some kind of idiopathic neuropathy”.
No one in my family had signs of CMT so doctors had ruled it out. I grew up not knowing why I was losing the ability to move my feet, legs, fingers and hands. By the time I reached high school, I was using a wheelchair full time.
It wasn’t until my second child, Grace, began showing signs of the disease as a toddler that I was correctly diagnosed with CMT. Since then, I’ve dedicated myself to find a cure for CMT through fundraising for research and on raising awareness by writing a children’s book series.
Carol: I met Marybeth in college when the two of us shared a dorm room. We formed a lasting friendship since then and, when Marybeth finally learned that she had CMT, I became involved in her effort to find a cure.
I helped her to write two children’s books, Arlene On The Scene and Arlene the Rebel Queen, to raise awareness of CMT.
As a school counselor, I also provide free school presentations using the books to deliver the positive message of striving to embrace differences, not merely tolerate or accept them, and this includes disability. Through the books and the school presentations, students and teachers also learn about CMT as well as our mission to find a cure.
Could you tell us something about your books? What’s the story behind them? Was Arlene inspired by a real person?
Marybeth and Carol: The books stem from a conversation we had while watching our kids play together. Grace was about six years old at the time, and Marybeth commented that there should be a book with the main character affected by CMT, not only so Grace could see herself reflected in the cultural landscape but also the other kids could better understand those around them who were growing up with a disability.
Carol has always loved writing, so she offered to draft the books if Marybeth and Grace would edit it. Each chapter was emailed over to the Caldarone House for scrutiny.
Even big brother Chris tweaked his character a bit!
Arlene is not Grace. However, we tried to include her real life experiences within a completely made up story. Arlene On The Scene addresses the following question: what if you are transformed from a kid into a kid with a disability? What would that feel like? What would that do to your self-image?
In the story, Arlene has CMT but no one can tell by just looking at her. In fourth grade, however, her doctors tell her that she has to wear leg braces full-time. Her worries and self-esteem hang in the balance, thinking that she would just become “the girl with leg braces”. In an effort to prove herself, she runs for student government but get caught up in a frantic school election and in an all out boy-girl war.
Through this experience, Arlene understands that while she must learn to incorporate her disability into her own positive self-image (to “live it” as her mother tells her), she should also not let that disability, and others’ perception of it, define her.
That’s the story of the first book, Arlene On The Scene. The second book Arlene The Rebel Queen continues the adventures of our heroine and her friends. Not only has Arlene embraced her identity as a person with a disability, but she is now poised to lead a movement! Inspired by a social studies unit on our country’s biggest social changes, she sets out to reduce her school’s carbon footprint.
There is opposition, of course, and the rebels have to figure it out how to effectively make changes without getting into too much trouble. While leading this revolution, however, Arlene also find herself marching away from the friend she’s always thought would be there for her.
Could you tell us something about the “School Outreach Program” and why it is so important to you?
Marybeth and Carol: The School Outreach Program was developed from the initial “author visits” that we began to do at local elementary schools. We understood that the message of the presentation could be much more than “I’m an author and I wrote a book”.
Carol has worked as a therapist for children with emotional challenges, so her background was perfect for this venture. The School Outreach Program was born, offering free presentations and materials to help kids understand the importance of empathy, to re-conceptualize disability as a difference, and to realize the power of writing to change minds.
Since 2010, Carol has presented in 100 elementary schools and talked with over 15,000 students, from New England to New York, Washington, DC, Los Angeles and many other cities.
The program is sponsored by the Hereditary Neuropathy Foundation, the institution that has supported the book series from the beginning. We donate all sales as proceeds to HNF, which is funding research for CMT.
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The book can be purchased through the links below. The entire revenue is used to fund research and to improve the awareness of Charcot-Marie-Tooth.
Purchase in the USA
Purchase in UK and Europe
And remember to tweet and share this story on Facebook (feel free to use the buttons on the left). Arlene is not just a book, it’s a manifesto! I am sure, she will thank you personally 🙂