Jesse Ball’s new novel Census explores loving someone with Down’s syndrome

“I felt, and feel, that people with Down’s syndrome are not really understood.”

Jesse Ball opens his eighth novel with an introduction detailing the reasons why he has written the book. His brother Abram Ball, who had Down’s syndrome, died in 1998 aged 24. “I felt, and feel, that people with Down’s syndrome are not really understood,” Ball writes. “I thought I must write a book that helps people to see what it is like to know and love a Down’s syndrome boy or girl. It is not like what you would expect.” 

Much in the same way, Ball’s writing, which is experimental in form and subject matter, is often not like what you would expect. He tends to write in very short bursts, sometimes completing a book in less than a month. He writes with a sparseness that is at once both liberating and frustrating – you rattle through his work but unless you stop to reconsider the text, it often feels as though you have missed the very essence of it. However, Ball’s brevity enhances the feel of his landscapes and characters, giving them space to breathe rather than showcasing some perverse linguistic reductivity.

Census opens with the narrator, a dying widower, digging his own grave. His son has Down’s syndrome, and he recounts the journey they have made together across a future America taking “The Census”. Starting at district A and finishing at Z, the pair mostly visit farmhouses and villages where the father records information about the people he meets. He also marks them with a tattoo to show they have been logged.

In a quirk characteristic of Ball, The Census is not for garnering demographic data – age, race, religion etc – but recording human meaning, significance and choice. The Census taker enters the house of the citizen and observes the way they live, often staying overnight or for a few days. As the novel progresses, it takes the shape of a road trip, with the father and son affected by each character they meet. The obvious marker here would be Cormac McCarthy’s The Road, but there is nothing apocalyptic about Census, nor necessarily violent. Moreover, this novel is deeper and more profound than The Road, as Ball’s ambition to help us know what it is like to love someone with Down’s is fully realised.

I cannot think of a novel I have read that has given me more insight into a human medical condition of which I have no personal knowledge. Ball does not pull sentimental strings, nor does he present Down’s as some sort of gift through which “normal” people can learn about themselves. His presentation of how communication works between the father and the son is fascinating and quietly moving. Telling his son about his mother’s death, the father recounts that, “I said it out several times, in several ways. Saying it to him I said it to myself for the first time. What he knows about it – about her being dead, isn’t what I know, because what he knew about her being alive was different than what I knew.”

The father’s understanding that things are different for his son is not mawkish or patronising, but more matter-of-fact. He ruminates on the negative reactions of strangers to his son, highlighting the “sharp” ignorance of people and how it made both him and his wife “like people less”. Ball shows us that the true nature of people is revealed in their treatment of the vulnerable and maligned – touching on arguments put forward by campaigners for neurodiversity and disability; that it is society that disables people, rather than a particular personal impairment.

Through a short reflection on their life as parents, the father reveals that both he and his wife were “never disappointed” by their son, but only that they wish they “could have done more”. Unhappiness did not exist for the couple, who instead felt they were “lucky to become the ones who were continually caring for him”. This sentiment, in another author’s hands, could have been laid on too thick, with the writer proselytising the virtues of “caring” as a means of attributing significance to your life, but Ball carries it off with characteristically succinct aplomb.

There is only one part of the book  that jarred with me, in which the father talks of the “freedom of burdens” and “that somehow we are all seeking some appropriate burden. Until we find it, we are horribly shackled, can in fact scarcely live.” My understanding of what Ball is saying here relates to Camus’s notion that it is possible to imagine Sisyphus is happy because he has a focused struggle, where many of us don’t. Fundamentally, though, freedom lives somewhere between struggle and choice.

But Ball is convincing enough for me to let that go as I read his work. His writing is unique and judicious. Matching this with his personal experience of loving someone with Down’s has produced a wonderful, stirring, essential novel. 

Kit Caless is co-director of Influx Press

Census
Jesse Ball
Granta, 256pp, £14.99

This article appears in the 06 July 2018 issue of the New Statesman, England in the age of Brexit