Guest Blog: Paul Nankivell, Author of “Redefining Normal”
March is National Developmental Developmental Disabilities Awareness Month! To celebrate, we’ll be spending NDDAM, as we like to call it, sharing stories from individuals in our programs, our staff, and members of our community who want to tell their stories, pose questions, or spark discussion. This week we’re focusing on education, and we’re pleased to share this piece from Paul Nankivell, a UCPLA-affiliated author who recently published his debut novel “Redefining Normal”.
Well, hello there! I’m a 55-year old man, and I have come to think of cerebral palsy as my twin sister. Sometimes cerebral palsy fights with me and I have to struggle against her to do what I want. Other times, she betrays me and can be a real a**hole! When I was younger, people told me that cerebral palsy was bad news, and that I needed to “overcome” her. So, I tried to run away from her and deny her existence. However, as I’ve gotten older, I’ve come to love and be very protective of her. Because, I now realize that without her influence, I wouldn’t have developed into a fully aware person.
Two years ago, I self-published a book entitled “Redefining Normal.” The book took me ten years to write, edit, and format because I use one finger to type. This book is based upon my experiences mainstreaming into the L.A. and Ventura County school systems over a twenty-five-year span that included college. My character, “Alan”, experienced the nascent special education system of the sixties. A decade later, he becomes part of a very small group of physically-challenged kids to venture into the uncharted waters of a “regular” middle school.
Then, my character has to prove himself all over again at a rural high school that never heard of mainstreaming or inclusive education. Lastly, I reveal surprising—and sometimes humorous—obstacles that he faced in obtaining his bachelor’s degree. The book has 32 chapters and is written with a progressive arc. But, each chapter encapsulates one of my experiences so that the reader has the option of reading specific chapters.
One of the reasons that I felt compelled to write this book is because there’s a paucity of literature about the first-hand disabled educational experience. Moreover, most books that deal with this topic, are authored by doctors or special education teachers who write books for parents of disabled children. These books are very clinical and “How-To” in nature. So, my goal was to delve into the human or emotional side of growing up as a disabled kid and striving for acceptance. I figured that the best way to accomplish this was to tell my personal story using third-person narrative.
My book covers many facets of what a physically-challenged child goes through in the education system. One of the overriding themes that kept popping up was that doctors, teachers, and so-called experts in special-ed, cannot be relied upon to make accurate forecasts about a given special needs child. For example, my birth doctor told my mom that my brain damage was so severe that I’d be in a permanent vegetative state and that the “right thing” to do was to put me in an institution for the rest of my life. But, my mom was one of those stubborn people who listened to her gut more than expert opinions. And, her gut told her that I had great potential. The bottom line is that parents and advocates are the best judges.
The book not only goes into how I had to make new pathways in the school system, I simultaneously relate growing up as a kid with special needs and my various relationships. Some of my interactions with children and adults were positive and some were not. The point being that every relationship altered how my character perceived his world from a given point in the book forward. When you read my book, you’ll witness the main character’s personality go through subtle transformations. And, how he used setbacks and difficulties to channel his focus.
If you want to read my book, follow this link.
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Paul Nankivell was born in Los Angeles, California in 1964. The difficult circumstances of his birth caused him to have a brain hemorrhage. Doctors deemed his prognosis so dire that they didn’t think he would survive the first few weeks of life. And, if he did, he would be in a permanent vegetative state. But, he overcame those odds. Now, although he has to use a motorized wheelchair, due to cerebral palsy–which in Paul’s case–causes severe balance and coordination issues, he’s well above average intellectually. At age 27, he proved the doctors wrong by earning a Bachelor of Science in Business Administration from California State University Northridge–(C.S.U.N.)–in 1991. His debut novel, Redefining Normal, is based on his experiences as one of the first physically challenged children to mainstream into “regular schools.” Today, Paul lives in Ventura County California where he’s actively participated in accessibility rights for physically challenged people.