Julie Justicz on the Difficulty of Finding a Home for Kids with Disabilities
A Conversation with G. P. Gottlieb on the New Books Network about Degrees of Difficulty
Julie Justicz’s novel, Degrees of Difficulty, is about Ben Novotny who was born with a rare chromosomal abnormality that caused profound mental disability and seizures. He is severely limited but forms a tight bond with his older brother Hugo, who invents fun distractions and games that become dangerous as Ben gets older and bigger. His sister, Ivy angrily longs to escape after graduation, and his brother, Hugo gives up his own dreams to take care of Ben. Degrees of Difficulty (Fomite Press, 2019) follows the family over several decades as they each come to an understanding of how Ben affected their lives.
Born and raised in England, Julie Justicz moved to the Bahamas when she was ten, and then to the United States as a teenager. Julie comes from a family of Olympians: Her father George Justicz rowed Great Britain in the 1960 Rome Olympics; her brother Robert competed in the Special Olympics as a swimmer; and Julie has been a proud participant as a triathlete in the Gay Games (formerly known as the Gay Olympics). She earned a law degree from the University of Chicago and received an MFA in Creative Writing from Vermont College of Fine Arts. As an attorney and advocate, Julie currently works on civil rights issues in Chicago. She lives in Oak Park, Illinois with her spouse, Mary, and their two children. When she’s not trying to read, Julie likes to run—physical motion seems to result in creative composting.
From the episode:
G.P. Gottlieb: What was your inspiration for this book?
Julie Justicz: My inspiration for this book was really the experience of living with and caring for my brother, Robert, who in many ways is similar to the character Ben in the novel. I wanted to explore the repercussions of a family caring for a kid with special needs like this and delve into the truth of my own life and also make that available to other people who have families with similar issues.
GPG: So the book, opens in 1991, with the father Percy taking Ben home from yet another place that doesn’t want him or can’t deal with him. Why does the father have so much trouble finding a home for Ben?
JJ: Ben’s needs are complex. He has both physical and intellectual disabilities and that’s complicated even further by the fact that he has rampant-type seizures. So his care needs are very complicated. The places that Perry finds for Ben along the way tend to be under-resourced; the don’t have the staff, they don’t have the trained staff, they don’t have the oversight that’s necessary to provide not just basic level care but the kind of quality care where you’d like your own child to be and to have a full life. So, at different institutions along the way, Percy and the rest of the family learn that Ben is not being appropriately cared for and in many cases the institution says, Hey, this kid is too complicated for us, and send him home.
GPG: It’s just heartbreaking, but why is taking care of Ben so precarious?
JJ: Well, he needs constant supervision, he needs someone to check in on him throughout the day, to be with him essentially throughout the day in a classroom setting or in a sheltered workshop environment because Ben has a wicked and mischievous sense of humor that may have real-life ramifications that he doesn’t understand. My own brother Robert used to do things like taking running shoes and trying to flush them down the toilet or throwing car keys out of the window and he would get a great chuckle out of those things. Sometimes, acts like that can go too far and in the case of Ben sometimes he does things that endanger other residents, so he needs real-close monitoring and frankly a lot of the places that we look at in the book don’t have that kind of care in place.
