Census, due out from Ecco in March, is Jesse Ball’s eighth novel in a decade. It’s an utterly whimsical literary fantasy in the manner of Kafka or Borges, and an intimate road novel about a falling, but not quite fallen, world—a more hopeful take, perhaps, on the premise of Cormac McCarthy’s The Road. But, more deeply, it is Ball’s portrait of his brother Abram, who had Down syndrome and died of an unrelated illness in 1998. The story suggests a wholly grateful way of viewing the lives of people with serious disabilities—of loving and being loved by them.

I want to interject here to say that Ball is my friend—we went to grad school at Columbia together, in poetry, though he went on to become a novelist—and that I have a son with severe cerebral palsy. There are many parallels between the circumstances of my son’s life and those of the son in Census. So, the chance to write about Ball and this book is, for me, both an opportunity to celebrate a friend and to speak about an issue that is of deep importance to us both.

Ball didn’t set out to write a personal novel, but he says that, after finishing his last book, How to Set a Fire and Why (Pantheon, 2016), “I became aware of the fact that in none of my books have I ever had a character who had Down syndrome.” He took this realization as a literary challenge, though writing Census also became a chance to “come out publicly as a person who cares about these things.”

Among the reasons Ball hadn’t written about Abram, with whom he had a very close relationship, or about any person with Down syndrome, he realized, is “the manner in which it would be possible to do that portraiture, to create an image of a person like my brother: the whole language of English as it stands right now conspires against you.” He adds, “How would I manage to depict the fullness of the life of my brother, while not stepping on any of the fallacies and land mines of the English language that accompany disability and these lives that are not like the regular life?”

Ball is right, of course: the world does not make it easy to describe the place of people with disabilities within a family, a community, a society. So many of the terms we have tell us almost nothing about their lives, and are often very cruel. “All someone has to do is spit out an ugly word, and everybody just chuckles and is happy,” Ball says. “When you’re in the room with a person like my brother, you’re not in the room with a disability. You’re not in the room with the pathology of Down syndrome. You’re in the room with a living person who, like all living people, is magnificent, and is a fool, and is silly and is great, and is all the things that people are: loving and capable of anger and hate. I wanted to make a portrait that includes the full scope of what a person is.”

Creating the “room” that Ball’s brother could occupy was his solution to the problem of how to portray him. “What I could do,” he says, “is constantly imagine a space in which he is present, and describe everything in the space except him, and eventually by doing that as a kind of a negative, he would appear.”

And so he does. Census follows a father and son who make a pilgrimage north through a country that may or may not be the U.S. They are never named, but we come to know them intimately. The father is a widower; his wife—who had been a famous performer, a kind of artful clown—passed away shortly before the novel begins, leaving their grown son in the father’s care.

The son’s condition also goes unnamed—Down syndrome is only mentioned in Ball’s preface—because, as Ball says, “I found that the mention of Down syndrome or the use of any of the language associated with disability and handicap immediately forfeits any possibility for a full portrait.”

The father is also dying of a degenerative heart condition. So he leaves his work as a surgeon and decides he and his son should take a last trip together—a kind of send-off, a swan song. The father begins a job as a census taker, traveling in a car with his son through towns named with the letters A through Z, the father imagining Z as his ultimate destination, where he will die after putting his son aboard a train back home and a new caretaker.

In a way that is typical of Ball’s fiction, the titular census, although a central aspect of the plot, has very little to do with what the book is really about. It’s a mysterious, somewhat disturbing undertaking. A bureau, which bears no small relation to Kafka’s shadowy bureaucracies, dispatches individuals to the far reaches of the country to interview and count citizens. At the conclusion of each interview, the census taker must mark each citizen with a tattoo along his or her lowest rib. Some people are eager to be tattooed; others are anxious or angry or just plain odd.

The pair encounter all sorts of people, from a hostile family who refuse to be counted to a kind woman who says: “I want to tell you something. My daughter was like your son. She is dead now for many years. But we raised her and she lived here with us, and joined with us in all the things that we did. She liked to sew things, although it was not easy for her, and she liked surprising people. She did not like to be surprised, but no one does. I wanted to tell you about her, because I think there are so few people in these later days who care about the kind of person they are.”

Mostly, we come to know the deep love between father and son. Census is among the best books of its kind that I’ve read, sitting alongside titles by Japanese Nobel-winner Kenzaburo Oe: a fictional portrayal of what it is truly like to live with and love a severely disabled person, which does not play on readers’ sympathies or call out to some public notion of what one should feel about a person such as the son in this book. Rather, Ball has simply shown readers what it’s like—how wonderful, confusing, sad, and complete—to know one such person.

What Ball accomplishes here is profoundly important for people like me and my son. This book has the power to change how people understand the disabled. Ball says: “I think that I spent my life reprimanding people for brutal behavior, relative to weak people, and this book maybe takes the opposite tactic. This is an explanation of why the way of thinking and feeling that my brother utilized is fundamentally strong, and fundamentally worthwhile, and something that should be paid attention to.”

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