For anyone with a disability or special needs, every day can be a new battle to be heard. For some, it is also a battle to communicate. This daily challenge is captured in the 50 Mums, 50 Kids, 1 Extra Chromosome video, which had, as of World Down Syndrome Day on March 21st, been viewed two million times. Styled as carpool karaoke, children and their mothers use Makaton sign language and sing along to the Christina Perri hit A Thousand Years. Fifty beautiful and unique love letters, captured in 4½ minutes.
Jesse Ball's Census considers this daily battle. It is dedicated to his brother Abram, who had Down syndrome. When Abram died in 1998 at the age of 24, he was quadriplegic, had been on a ventilator for years, and had undergone dozens of operations. His death was not unexpected, yet Jesse Ball had always imagined his own future and that of his older brother as being forever intertwined. Since he was a small child he had always thought he would assume the mantel of care for his brother, and part of him couldn't initially accept the change Abram's death brought: "What I felt as a boy I find myself able to feel now – a sad and powerful longing for a future that did not ever come, with all its attendant worries and fears."
Census is a journey without names. A retired surgeon and his grown son travel through an anonymous country because the father has a new job as a census taker. The father is dying, and considering who will take on the role of caring for his son. Places are identified only by letter, so from A to Z, they move through the very DNA of language. The further north they go, the more wild the landscape becomes, the more guarded the inhabitants. They encounter kindness and cruelty, joy and pain. And everywhere, the profoundly ordinary complexity of human existence. Many of the people they talk to are described only physically or by occupation, and such absence of classification suggests shapeshifting; a world of soft, mutable edges. This is a land where people are not labelled. Chapters are episodic and epigrammatic: some no more than a series of blunt sentences that ladder through the pages, challenging the reader to keep climbing the rungs without pausing to consider where the journey will end.
Curiously complicated
This is both a curiously complicated and persuasively simple book, in which we are regularly told something only for it to be partially withdrawn soon afterward. While in town G, the father reflects at length about photographs of his son taken by the boy’s late mother. He considers where each photo was taken and what it represents, what they each felt, and their son’s response to each image. It runs to several pages, yet concludes “my son would ask why it was so dark in the photographs. I believe it is true that many of the photographs were taken inside, and it is also true that the lens of the camera we owned was a rather poor one, and so the light was not good enough for excellent photography”.
The declaration on the book’s cover that Census is a novel protests too loudly: the text reads more like a letter exploring the complexity of love, of Ball’s “sad and powerful longing” for his brother. Every life becomes its own census, each person a record of an existence on this “earth that never gives without taking”. A census is an official count in which every person is recorded equally, regardless of the lack of equality they experience. The father reflects, “those who travel on behalf of the census – not only do they have no special rights or protection, as do many other sorts of workers, but in fact, they sign away their basic rights of protection”. If for census taker we read carer, then Ball is warning us that the person who gives voice to the voiceless is also vulnerable. Because, just as the mothers in 50 Mums, 50 Kids, 1 Extra Chromosome do, Jesse Ball is telling us a most important truth through the father: those who battle to communicate will always need a champion.
