An old Mary T. Lathrap poem gave readers the proverbial expression of truly knowing someone by “walking a mile in his moccasins.” A new book by Paul Nankivell enlightens readers, sometimes painfully, by making them walk in Nankivell’s leg braces and roll in his wheelchair.

Redefining Normal is the title of Nankivell’s roman à clef, an autobiographical novel that follows protagonist Alan Jones, a youth stricken with cerebral palsy. Alan’s speech is difficult for strangers to comprehend, he must move around primarily via wheelchair, and he requires constant assistance with basic life routines. 

Mentally, he is fully cognizant, even above average. Yet from childhood through college, Alan gets shuffled through an oft-impersonal series of “special schools” or separated classrooms that seem more geared to dreary warehousing and babysitting Alan and those like him, no matter how high or low their levels of function.

Kirkus Reviews praises the novel as a “scathing rebuke of America’s education system, which has not only failed to provide appropriate educational opportunities for differently-abled students, but also has exposed those pupils to ruthless and inhumane practices.”

“Whenever a movie or book is released to the general public about a person with a disability, one of the first—knee-jerk—words you’ll hear is ʻinspirational,’ ” says Nankivell. “When that word is used in that context, it always rubs me the wrong way because the underlying message is that society as a whole doesn’t expect people with disabilities to be fully participating members.…So when a person with a disability does something beyond able-bodied culture’s predetermined expectations, they’re branded as ʻinspirational.’ However, the people with disabilities [whom] I’ve known and communicated with over the years never saw themselves as inspirational figures. We’re just like anybody else with our own talents and insecurities, trying to live life to the fullest.” 

While Nankivell wrote Redefining Normal in a voice age-appropriate for YA-to-adult readership, the narrative is far from the dreaded “I-word.” In and out of class—in numerous districts, due to his family’s relocations—Alan (often with his indomitable mother in his corner) scores victories in his war for respect and recognition as a bright kid deserving of a future. But it’s a repetitive struggle, strewn with apathetic administrators, abusers, and the occasional shining star among generally well-meaning but clueless counselors.

“The book is based solely upon my experiences in the school system and college,” says Nankivell from his home in Ventura County, California, where he actively participates in accessibility rights for physically challenged people. On his choice to use a sort of “nonfiction novel” narrative rather than straight memoir, the author says, “Well, I didn’t exactly write a glowing endorsement of the schools that I attended or the people who worked for them. So I just kept the facts—but changed the names—to protect the guilty!”

Redefining Normal is not without its moments of heartache and emotion; Alan faces the early death of Emily, a fragile classmate he considers his first love. But it is just as often bracingly forthright and candid rather than Disney Channel. Even Alan can be churlish and, in one dramatic passage, realizes his own capacity for cruelty: “Alan was left to grapple with the fact that he was seen as nothing more than a bully by a boy he used to inspire. He had become another’s tormentor, just as Nick had been his.”

“I wanted my book to step away from that stereotypical template by showing all sides of the main character—good and bad,” Nankivell says.

When Nankivell graduated from college at 27 (from California State University, Northridge), his major—like Alan’s—was in business administration, rather than literature. Still, he enjoys reading the classics…of high fantasy and sword/sorcery. “My three favorite authors all come from the fantasy genre: J.R.R. Tolkien, Terry Brooks, and Sharon Skinner. I not only admire their abilities to construct worlds, but also how they create characters who seamlessly interact within their given environment.” Nankivell’s exposure to Thurber and Vonnegut in his teens also “did light a fire in my creative soul.” 

He says, “I [also] need to give credit to author Ron Suskind and his book A Hope in the Unseen for bolstering my confidence that my type of book might be successful. For the most part, however, a plethora of writing instructors that I’ve had over the years helped to refine my craft.”

Completing his manuscript took 12 years. “I’m not trying to garner sympathy from anyone,” he says. “But due to my [particular] kind of cerebral palsy, I can only use one finger to type. More specifically, I use my right hand to hold my left wrist [while I] type with my left pinky finger. Using this method, I could hit a few hundred words on a good day before my hands cramped up.”

He went the self-publishing route after his business-major instincts told him it was the surest way to make a dozen years’ labor available to the marketplace immediately and conveniently. “Since I’m a new author, I didn’t know [whether] traditional publishing houses would give me the time of day. So I looked into a handful of self-publishing companies and compared packages. I eventually settled on Bookbaby because at the time they had a good set of packages at economical prices.” A Kickstarter campaign helped him fund it.

The period covered in Redefining Normal spans the 1970s to the 1990s, and Nankivell says his impression is that little positive change has happened since. “The only way to ensure progress is for the disabled community to perpetually advocate for our place in society….In many cases, I’ve found…ʻeducator types’ to be resistant to the concept of inclusive education.”

Nankivell is at work on a sequel that follows Alan Jones into adulthood and depicts how romance and intimacy figures in with disability—truly terra incognita for a majority of readers. 

“I purposefully didn’t attempt to construct my prose with a specific audience in mind,” he says. “I feared that if I tried to customize too much, I’d spend more time on framework and less on the message that I wanted to convey. I know it’s an old, clichéd saying, but my mom always said, ʻSpeak your truth.’ ”

Ohio-based author Charles Cassady Jr. writes about pop-culture, paranormal, and true-crime novels.