Jesse Ball's latest book Census is about a man — a widower — who learns he doesn't have long to live. So he takes one last trip with his adult son, who has Down syndrome. The father signs up as a census taker for the government, and he and his son head north.
"I suppose the profession is arbitrary," Ball says. "It's more of a model for the way we as a culture look at the world."
Specifically, Ball wanted to compare the "hyper-empirical mode of Western civilization" to the perception he observed in his late brother, who had Down syndrome. Here's how he frames it in the preface to the novel:
It occurred to me last month that I would like to write a book about my brother. I felt, and feel, that people with Down syndrome are not really understood. What is in my heart when I consider him and his life is something so tremendous, so full of light, that I thought I must write a book that helps people to see what it is like to know and love a Down syndrome boy or girl. It is not like what you would expect, and it is not like it is ordinarily portrayed and explained. It is something else, different than that. But it is not so easy to write about someone you know, much less someone long dead, when the memories you have of him are like some often trampled garden. I didn't see exactly how it could be done, until I realized I would make a book that was hollow. I would place him in the middle of it, and write around him for the most part. He would be there in his effect.
Jesse Ball is one of America's most accomplished writers. He's published volumes of poetry, short stories and novels. He spoke to us from NPR's studios in New York.
On the influence of his late brother Abram, who had Down syndrome
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. And 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.
Well, a thing can be known by its particular qualities. But it can also be — a thing can be known by its effect. And so if that's true, we could render a person simply through the effect that that person has on those around him. And that's what I decided to try to do. And the reason is that I wanted to avoid all of the cruel and caricatured language that surrounds disability. A word like "retarded" — 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.
Part of the progress that [the father and his son] 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 we are tenderest to the touch are these wounds that we have.
On the tattoos which characters receive after being counted in the census
I think there should be an element of play in a text — even one which for me was as serious as this. And in writing, I want to write in the mode of delight. So there are things that delight me. One of those is a traditional thing — this tattooing. I have many tattoos. So I would say that the choice of the tattoo, in one sense, is just a delightful thing to write about as I proceed.
At the same time the tattooing is — it reaches into our body. And many of the things we supposedly — our oath to the nation that we live in, and all the times we had to repeat the Pledge of Allegiance, and our Social Security Number — it may not be etched into our skin, but in fact it might as well be etched into our skin. So it's an obvious sign of the deformation of the individual before a totalitarian state.
On if the book gives any closure about his brother's death
I wouldn't say gives me closure in terms of his death. However, 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.
Samantha Balaban and Daniella Cheslow produced and edited this interview for broadcast. Patrick Jarenwattananon adapted it for the Web. Copyright 2019 NPR. To see more, visit https://www.npr.org.