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Down’s syndrome is a difficult topic. It’s difficult to discuss in conversation, in politics, in writing – difficult all round. This difficulty is a bit strange because, medically, our knowledge about Down’s syndrome is advanced. Among other things, various genetic profiles (both general and specific), and expected physical and psychological traits have been, and continue to be, researched and written on extensively.

But genes, statistics, and facts about physical appearance and psychological make-up reveal next to nothing about emotional experience; these facts and the experience of the lives of which they are a part are very much apart. It’s worth noting that this isn’t particular to Down’s syndrome. You might have a remarkably similar genetic makeup to the person sitting next to you on the bus, or in the library, but you most likely know nothing of their private psychological response to the things around you. When it comes to emotional experience and our responses to it, even twins have a tough time ‘getting’ one another.

“Facts about physical appearance and psychological make-up reveal next to nothing about emotional experience”

The point is that understanding, in the sense of comprehension, isn’t everything. If it were, life would be extremely difficult, and human interaction would be fraught with the tension that arises when we don’t completely grasp the reasons behind other people’s actions – a condition prevalent enough as it is. Acceptance and patience – perhaps two synonyms of a different though no less familiar sort of understanding – are more important.

This type of understanding is central to Census, American writer Jesse Ball’s most recent novel, which revolves around a widowed doctor and his son, who has Down’s syndrome. It tells the story of their experience taking the census and the encounters they have on their journey, which is prompted by the father’s (also the narrator’s) diagnosis with an unspecified terminal illness. But it is also the story of a father’s effort to understand his son, and an eloquent illustration of the ways in which communication and human interaction can often forgo words and letters.

Cover of Ball's Census

For Ball the subject is a close one: his brother, who died in 1998 at the age twenty-four, had Down’s syndrome. Ball is clear that Census is about his brother. In this way the book is at once fiction and autobiography; abstractly it is about a father trying to understand his son, but it’s hard not to read it as an examination of Ball’s relationship with both his brother and his father, and his perception of their relationship, in a fictional frame. As he explains in the book’s powerfully uncontrived prefatory note, Census is a response to his feeling that “people with Down syndrome are not really understood.”

But Census is neither a book about Down’s syndrome, nor an attempt to understand it, in any strict sense. For example, Ball’s narrator, the father, gives no descriptions of his son, who remains nameless and without attributes to the reader. Census is instead written around the son, and thus around Down’s syndrome. As Ball explains: “I realised 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.”

“Census is written around the son, and thus around Down syndrome”

At moments in Census Ball certainly succeeds in this ambition. Relatively early in the book, for example, there is a passage concerning a lunch break and a persimmon, the tropical fruit:

‘When I turned away for a moment, my son ate the entire persimmon. I didn’t like that, I began to say something, I felt it wasn’t the kindest thing he could have done – but then I realised, the persimmon should go to the one who will eat it in a gulp when you look away.’

In this case – and there are many in the book – Ball points to the potential of staving off anger and confusion in the face of apparently inexplicable, even impolite actions. He hints that in doing so we might produce an insight that would otherwise be obscured by our reliance on immediate comprehension.

A natural corollary of Ball’s approach is that his protagonist, the son, remains incomplete in the sense typically expected from the novel form. Much of what is typically offered to the reader in a novel is, in Census, withheld. There are almost no names – almost, as the only character to whom Ball gives a name is Henry: a “military-style doll” owned by the occupants of a house the father and son visit. Descriptions of other characters, too, are removed. There are no indications as to where the father and son are conducting their census: the journey they take is through undesignated places which, rendered in Ball’s almost disturbingly spare prose, give little suggestion of difference from one another. Were it not for the novel’s ‘chapters’, which, following the form of a census, simply list the alphabet, the reader would have no sense that a progression through time and space was taking place.

“In the book’s form, then, is a suggestion that detail and factual information are largely meaningless.”

Particularly toward the end of the book, as the father’s condition worsens, the alphabetically ordered chapters heightens the reader’s sense of his approaching death. As his time with his son runs out, the census taking itself is largely forgotten, the focus instead becoming the recollection of his son’s life and an attempt to conjure up hope for his future. His desperate struggle to do so in the face of an onrush of doubt and anxiety is reflected in the fact that S, T, U, V, W, X, Y & Z are merged into a single chapter, where previously each letter and corresponding town had been given its own pages.


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In the book’s form, then, is a suggestion that detail and factual information are largely meaningless. The chapters, place names, and indeed character names are irrelevancies. The narrator’s illness suggests the same. This point is made all the more salient by the fact that the project which gives the book its title – a census – is precisely about detail. In performing a census you take stock of people, gathering information on them to form of picture of the whole of which they are a part: the nation. About half-way through the book, Ball makes this clear. The father decides to dispense entirely with the traditional mode of census taking:

‘Out in the world I have come to see that he who looks too hard for any particular thing, though he may find it, will certainly miss the most wondrous and strange things he passes, though they stare him in the face.’

In writing around his brother, and around Down’s syndrome, Ball has succeeded in offering a picture of something absent in academic studies: what it is like to love someone with Down’s syndrome, and the ways in which their experience can formatively shape that of those around them. Aside from being an appealing narrative device, and the formal ingenuities that accompany it attractive and fresh, Ball’s choice to write not about his subject but around it is both honest and successful. Try as we might to put ourselves in someone else’s shoes, this is never likely to offer much in the way of resolving our incomplete perceptions of action and character. Census recognises the truth of this impossibility, and excels in its attempt to navigate around it.

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