美国国家公共电台 NPR One Final Road Trip Takes A 'Census' Of The Hurt In The World

DON GONYEA, HOST:

Jesse Ball is one of America's most accomplished 1 writers. He's published volumes of poetry, short stories and novels. His latest is a novel called "Census 2." It's about a man, a widower 3, who learns he doesn't have long to live. And he takes one last trip with his adult son, who has Down syndrome 4. So the man decides to sign up as a census taker for a mysterious government agency.

JESSE BALL: In a sense, the profession is arbitrary. It's more of a model for the way that we as a culture look at the world.

GONYEA: Ball wanted to compare how a government agency in an unnamed country might see the world with how a person with Down syndrome might see the world. He says he wrote the book for his brother Abram, who had Down syndrome.

BALL: He was a wonderful boy and a wonderful man. And growing up with him and then watching his struggle as he died - he was quadriplegic and on a ventilator at the end. But watching the way in which he handled his life is really central to both the creation of my life and my sensibility as an artist.

GONYEA: Abram died in 1998 at just 24 years old. Ball grew up thinking he'd be his older brother's caretaker. So this book is a version of the relationship he always thought he'd have with his brother.

BALL: When I realized that I hadn't had a character in any of my books who had Down syndrome, I knew that I had to write this book. But it wasn't so clear exactly how because I didn't want the book to falsely render him.

GONYEA: So Ball says he decided 5 to write a book that would be hollow. He'd put the character in the middle of the story and write around him.

BALL: And the reason is that I wanted to avoid all of the cruel and caricatured language that surrounds disability - a word like retarded 6 - people constantly say it. And for years and years, I corrected them. But I thought, in this book, I'll just show why that word is a fallacy in and of itself.

GONYEA: We get a sense of the son through his interactions with his father and the effect he has on the people they encounter - a farmer who plays chess with them, the woman in the housecoat who gives him monogrammed napkins and a mother who had her own daughter with Down syndrome.

BALL: Part of the progress that they make through the world is to meet different people who have been hurt. And this provides the opportunity for the boy's effect to be seen because often in our interactions with others, the places where we're tenderest to the touch are these wounds that we have.

GONYEA: As we read, we sort of know how this book ends. The father has a terminal illness. And as the father and son travel further and further north, you know when they're getting towards the end of their journey together. Ball says writing this book did bring him some closure.

BALL: It does help me to resolve the complicated feelings I had as a child about how I ought to behave in the face of ignorance, the ignorance of my brother's role in the general life of the community.

GONYEA: That was Jesse Ball. His new novel is "Census."