I have an interest in fictional representations of autism as a reader and as a mother. Encountering fictional characters who are autistic or intellectually disabled encourages me to reflect on Dylan and the ways in which I care for him, a process I have found as useful and illuminating as reading a research report or any professional advice. As a reader, meanwhile, I am interested in the ways in which authors can create ‘authentic’ narratives of autism.
A review of Census by American writer Jesse Ball caught my attention recently. The novel features a character with Down syndrome, rather than autism, but a couple of things drew me to it. Firstly, the novel has ‘personal authenticity’ in that Ball based the character on his own brother, Abram, who died aged 24. Secondly, as well as Down syndrome the character has an intellectual disability and, like Dylan, needs constant care. In the introduction to his novel, Ball explains why he wanted to write the book:
people with Down syndrome are not really understood. What is in my heart when I consider [my brother] 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.
I am interested in the way that Ball claims a unique role for fiction in the representation of disability and privileged access for family members in understanding the lives of the disabled. His aim in writing Census, Ball claims, was to place his brother ‘in the middle of it’. This he has done – although on reading the book I found myself as interested in the novel’s representation of the father as the son…
It is the father in Census who is the care-giver and his response to receiving a terminal diagnosis is at the heart of the novel. With limited time to live, and his wife already dead, the father has to face difficult issues: Who will care for his son when he is gone? How will his son cope without him? Will he be happy? These are questions I imagine all parents of disabled adults ask themselves – I know that I do. And, as we age, the questions become more insistent and more terrible. Some days – most days I confess – I am scared to die.
Fiction is good at going to places that make us fearful and from which our instinct is to turn away, but it also has redemptive power. The ‘narrative arc’ of Census is a road trip which the father and son make from the town of A to the town of Z. The father has resigned his position as a doctor to take on the role of census taker. This involves father and son travelling through an alphabetical landscape, interviewing residents of the places through which they pass and leaving a physical mark on those they meet. The jacket blurb claims that: Census is about the ways in which people react to the son’s condition, to the son as a person in the world. It is about discrimination and acceptance, kindness and art, education and love.
In embarking on the road trip with his son the father hopes to reassure himself about the future: This father believes that the good is possible. It must be possible. Could I be as brave and optimistic and hopeful and philosophic in the face of death, as this man I asked myself?
The Magical Town of Llangollen
I struggled with the novel initially. I didn’t really get the tattooing of people they interviewed for the census. I felt lost in time and space. Where was I? America? Some dystopian future? I almost put the book in the ‘recycle’ pile. But it so happened that as I approached L (the chapters are alphabetical, following the journey taken by father and son) Dylan and I were due to go to Llangollen for Easter. Perhaps I should take the book with me and compare the reactions to father and son in the fictional town of L with the experiences of a mother and son in Llangollen?
Dylan and I have spent time in Wales previously but never in the Welsh border lands. I was drawn to it having seen footage of the canal aqueduct at Pontcysyllte on Countryfile. That looked like something Dylan might enjoy, I thought to myself. When I researched the area I discovered that not only was there a canal and aqueduct at Llangollen but a waterfall, beautiful river (the Dee), chain bridge, castle, viaduct, church, abbey and (how much better can it get?) steam train. This promised to be Dylan wonderland – and just as I thought it couldn’t get any better, when I searched for accommodation I found a Station Master’s cottage at Berwyn, one stop up the line from Llangollen, situated by the chain bridge with a view of the Dee and passing trains.
The real town of ‘L’ lived up to its magical promises. The cottage came with complimentary passes for the steam train which we used daily to travel up and down the line, walking stretches of the Dee Valley Way and visiting sites of interest, beauty spots and pubs. Highlights of the week for me were a trip to Plas Newyd (home of Eleanor Butler and Sarah Ponsonby, the ‘Ladies of Llangollen’) and hikes up Velvet Hill and to Castel Dinas Bran. For Dylan, I think, it was rides on the steam train and the experience of living in a cottage with a window seat view of the river and passing trains. He also thoroughly enjoyed our boat trips, picnics, canal walks and pub visits 🙂
And the people of ‘L’? How did they react to the son’s condition, to the son as a person in the world? With acceptance, kindness and love, as I so often find when I travel with Dylan. The station volunteers returned his firm handshakes. Passing engine drivers waved to him each day. In cafes, pubs and shops, assistants listened carefully as Dylan had a go at ordering for himself. He was helped into his preferred seat on canal boats and buses. When the heating broke down in the cottage it was quickly fixed so that Dylan could have his bath. People could not have been kinder.
But it is easy to be kind when someone is happy and calm – the real test is when Dylan becomes anxious or frustrated. On our last day in Llangollen, there was a ‘Thomas’ event. I was a bit nervous about it, thinking Dylan would not like the crowds and disruption to ‘his’ steam train. Sure enough, when we took the train one stop to Llangollen from Berwyn that morning Dylan flung himself full-stretch on the platform at sight of Thomas. Onlookers were shocked but not troubled or unkind: intuitively, they made space for Dylan to recover himself…
The Fictional Town of L
Census paints a rather different portrait of the fictional town of L. Their arrival in L represents a low point for the census takers:
As my son and I drove down the long slope putting K well behind us, I could see through the fogged glass of the window a long valley presented ahead and on either side. The remainder of our trip would be made in a sort of industrial hell interspersed with bands of what might be called wilderness, but what were, in essence, abandoned tracts, towns not thought worth exploiting, and the lands around them.
My condition pressed upon me as we went, and I felt again that we should stop, perhaps that we should even stop for some days, but the first motel we came to was filthy, and though we bought a room, my soon would not enter it, and we ended sleeping in the car.
Will you please go in? Please?
He would not go in, not for anything.
The motel was the Leapley Motor Inn, and I confess that I did not want to sleep in the room either.
The next morning, we went to an apartment complex and knocked on the first door we came to.
My son and I had argued about whether people would be different here. Or rather, we both agreed they would be, but he thought they would be nothing like the ones before. I disagreed… (p. 164)
The father and son are increasingly isolated in L, spending time alone and sleeping in their car. The father is troubled by dreams of humiliation, torture and abuse. He is dizzy and breathless. At nights, he imagines the car is a coffin. Bleak as L is, however, it is not terminal: the promise of M (and N and O and P…) still lie ahead for father and son:
There was nothing for it but to continue to Z. And at the same time, as my condition worsened, I felt sure that I would not make it to Z. What then? When there is nothing to do, you do what little there is – what little is left. (p. 172)
Through the Triangle Window
The father and son do make it to Z. They arrived (by which I mean ‘I finished the novel’) on the last day of our holiday in Llangollen. My road trip with Dylan had provided the space I needed in order to understand and appreciate this very special book. A cover review declares: ‘I defy anyone not to read its final pages through tears’. Dylan gets upset when people cry so I was glad for the secrecy of my attic room with its triangular window. My experience of the narrative became so powerful that I cannot separate this image from the father putting his son on a train in Z:
After many days, after an almost impossible distance, the train will stop at a little station near nothing. It will have to travel that far – until is almost near nothing. The train will halt, grinding its metal brakes. The conductor will look around. The conductor will find my son in the seat he has chosen, a window seat from which he will be looking out. My son will be used by then to the traveling. He will have become fond of the train. The conductor will help him up, will get this bag. They will go together to the exit. During the trip, a trip that will last months, maybe even years, the conductor will have become fond of my son… My son will step onto the platform and stand there. He will stand there. The train will pull away. (p. 240)
The Llangollen trains through my triangle window made the son’s metaphorical train ride heartbreakingly real. What they also made real, however, were the blessings received by the father during the journey they had taken together. Here he is in ‘J’ reflecting on he and his wife’s feelings about their son:
We felt lucky to have had him, and lucky to become the ones who were continually with him, caring for him. I have read some books of philosophy in which the freedom of burdens is explained, that somehow we are all seeking some appropriate burden. Until we find it, we are horribly shackled, can in fact scarcely live. (p. 153)
Our trip to Llangollen ended with me feeling grateful for the fortune which had bestowed the ‘freedom of a burden’ through which I have learned to live (if not to die).
Census by Jesse Ball is published by Granta (2018).