Arianna’s Magic Boots: stamping out a taboo in children’s books
Karen Gasperini and her daughter, Arianna, share a diagnosis of Beals syndrome. When Arianna was a child, Karen would dream up stories for her, in which Arianna was the main character, wearing leg-braces that were “magic boots”. Before long, these stories were enchanting other disabled children, but publishers weren’t interested…
By Joe Rumney
A shared diagnosis
Karen Gasperini, who lives on the east coast of the United States, has scoliosis (her spine twists and curves to the side) and a rare genetic disorder called congenital contractural arachnodactyly, also known as Beals syndrome. This connective tissue disorder regularly causes Karen muscle tightness, and sometimes muscle spasms.
Congenital contractural arachnodactyly (CCA), also known as Beals syndrome, is a rare genetic disorder in which certain joints fix in a flexed position. Affected people have abnormally long and slender fingers and toes, permanently flexed fingers and/or “crumpled” ears. People who have the disorder may have a curved spine, abnormally positioned feet, outwardly displaced fingers, and an abnormally short neck.1
When Karen reached adulthood, her doctors told her she had a 50/50 chance of passing her condition on to any children she might have. Unfortunately, when her daughter Arianna was born, she did inherit the disorder.
The pair don’t have any cognitive impairments, but they do live with physical restrictions. They have dexterity issues, and they find walking long distances a challenge, so they usually rely on wheelchairs. “It’s a problem doing things that people take for granted—like mopping the floor or cleaning the bathroom. I try to do them, but then after a while, I feel excruciating pain.”
As a toddler, Arianna had to wear leg braces, also known as ankle-foot orthoses to support her legs. She also needed physical therapy to improve her mobility. Although these challenging sessions were vital to improve her mobility, she often struggled to understand the reason for them; her anxiety about the appointments often got the better of her. In desperate need of a way to help calm her, Karen would make up stories…
Stamping out a taboo with “magic boots”
To help her daughter overcome her fears, Karen would tell Arianna stories about her leg braces (her “magic boots”) having superpowers… All she needed to do was to close her eyes, stomp three times and say, “Away we go!” Then she would be whisked away on an adventure!
Arianna loved the stories so much that she persuaded her mother to share them with other children having physical therapy. “We made it into an imaginary game, and they soon realised the physical therapy isn’t as hideous as they once thought. I just tried to make it as fun as possible.”
“My daughter ended up having the same disability as me. It was like déjà vu; I saw myself in her. She was having the same challenges and setbacks as I’d had.”
Growing up with severe scoliosis in the 1980s—when less was known about Beals syndrome—Karen knew of nobody with a disability she could relate to. “I didn’t have a character in a book I could look at and say, ‘Yes, this person is just like me’.”
With her difficulty in walking, because of her curved spine and clubfoot, it was easy for Karen to feel excluded, and sadly, her disability made her a target for bullies. Luckily, she had support from her siblings. “The bullies did try it from time to time but I’m blessed with a bunch of brothers, and once they found out whose sister I was, they left me alone!”
Karen’s mother never treated her daughter as a child with disabilities and made her chip in with chores, just like her siblings. “My mom didn’t wrap me in cotton wool. She always tried to prepare me for the outside world—because it can be cruel.” Karen shared those valuable lessons with Arianna as she grew up, and the stories were part of that process.
As time went on, Karen started to notice how other disabled children valued her stories too: “Families would say to me that the stories really helped their kids.” It was then that Karen decided to capture these oral stories in a children’s book—with her daughter Arianna as the main character.
“I didn’t have anyone with a disability to look up to when I was young. I wanted to make sure I had that in my books for the kids of today.”
Inspiring disabled children around the world
As Karen approached publishing companies to try to fill this void in children’s fiction, she encountered a disturbing barrier. Incredibly, many publishers told Karen that her disabilities would make it difficult to market her! “They just couldn’t fit me in one box. They would ask me: ‘What do you identify as?’ But I can’t identify as one thing—I feel like that wouldn’t be showing my daughter how to be her true self.”
Caring for Arianna was Karen’s priority, so it was 10 years before Karen felt the time was right to try one more time. But this time she would self-publish. With the stories already written, the greatest challenge now was finding an illustrator who could perfectly capture the story—and Arianna’s likeness, of course. With her daughter’s help, Karen finally settled on illustrator Deanna McRae.
After years in the making, Arianna’s Magic Boots was ready to launch. Karen could finally proudly share her stories as a biracial, female author living with a rare disability. “Like I always tell the children I meet every day: always believe in yourself.”
Since its publication, Karen has received messages from parents around the world, including the UK, Canada and Australia. “They really felt my emotion as a parent, and as someone who has lived through this too. It’s giving their child someone with a disability to look up to—which I didn’t have myself.”
In 2018, Arianna’s Magic Boots won the Purple Dragonfly Certificate of Excellence in Children’s Literature, in the disability category.2 According to a 2019 study by the Cooperative Children’s Book Center (CCBC), just 3.4% of children’s books published in the US featured a disabled main character.3 A study in 2016 showed that one in four US adults had a disability,4
Karen has since published a second book called Underwater Sea Adventure, along with a colouring book based on Arianna’s Magic Boots. Karen teases that she also plans to make a third instalment (hush! it’s about a magical wheelchair that transports Arianna to her orthopaedic appointment).
Arianna, now a 20-year-old college student, is still very much the inspiration behind the book series and the driving force for her mother’s success. “Arianna tells me, ‘I think you should just keep telling the stories because it will help more kids worldwide.’”
“Don’t try to be like everyone else because then you lose yourself in the process. Always, always believe in yourself.”
Follow Arianna’s Magic Boots on Instagram
References:
[1] Congenital Contractural Arachnodactyly – National Organization for Rare Disorders. Accessed January 19, 2023. https://rarediseases.org/rare-diseases/congenital-contractural-arachnodactyly/?filter=ovr-ds-resources
[2] Purple Dragonfly Book Award Contest 2018 Winners. Story Monsters Book Awards. Accessed January 19, 2023. https://www.storymonstersbookawards.com/purple-dragonfly-winners/purple-2018
[3] Tyner M. CCBlogC: The Numbers Are In: 2019 CCBC Diversity Statistics. CCBlogC. Published June 16, 2020. Accessed January 19, 2023. https://ccblogc.blogspot.com/2020/06/the-numbers-are-in-2019-ccbc-diversity.html
[4] Okoro CA, Hollis ND, Cyrus AC, Griffin-Blake S. Prevalence of Disabilities and Health Care Access by Disability Status and Type Among Adults — United States, 2016. MMWR Morb Mortal Wkly Rep 2018;67:882–887. DOI: http://dx.doi.org/10.15585/mmwr.mm6732a3
