two memoirs of disability and family explore Deafness and dwarfism
- Written by Heather Taylor Johnson, Adjunct Research Fellow at the JM Coetzee Centre for Creative Practice, University of Adelaide
In my many years of reading and writing about disability and chronic illness, my preference leans toward books that look outward, rather than inward, in their approach to truth-telling. The intricacies of living in a marginalised body tend to feel more philosophical if they resist solipsism and reach toward the universal.
I’m thinking about Fiona Wright’s essay collection, The World Was Whole, which focuses on suburban and urban houses and homes, and invites us to think about the body as home – and the question of what happens when the body fails us.
Books like this prove inclusive, rather than exclusive, because they cater to those living with disability, but also use a near-universal experience (in Wright’s case, the theme of houses and homes) as a framework to help readers to imagine their way into their specific experience (for Wright, of being failed by her body).
Review: The House with all the Lights On – Jessica Kirkness (Allen & Unwin); Broke – Sam Drummond (Affirm Press).
The more people included in a readership, the wider the discussion and the greater the potential to grow larger communities of caring and empathy.
In their plight to lift the lid on oft-hidden disabled experiences, two debut memoirs – one exploring Deafness, the other pseudoachondroplasia (a form of dwarfism) – do just this. They focus not just on the experience of living in an othered body, but on the authors’ experiences of family.
Deaf ways of being
Jessica Kirkness’s grandfather videoed his family, his sheep and the busy ants. But as a Deaf person, he didn’t bother with the audio when showing those videos to others. For him, audio was irrelevant: it’s seeing that matters.
Being a highly-tuned seer is a Deaf Gain. As Kirkness explains in her book, this is “the notion that there are unique cognitive, creative and cultural benefits arising from Deaf ways of being in the world”. Her memoir illustrates this notion.
Kirkness grew up living next-door to her Deaf grandmother and grandfather and The House With All The Lights On is about the deep love they shared. In its very language, it’s hyper-aware of Kirkness’s role as a hearing person writing about the Deaf experience.
Jessica Kirkness grew up next-door to her Deaf grandparents (pictured, with Kirkness and her mother).
Author provided (no reuse)
To be deaf (small “d”) is to be without hearing – but to be Deaf is to be part of a shared culture, who identify as culturally Deaf and share a signing language. (In Australia, that’s Auslan, or Australian sign language.)
If I were to tell you a story in sign language – the story of my grandparents and me – I’d begin with a single finger touching my chest. My hands would form the signs for “grew up” and then “next door”, a flattened palm rising from my torso to eye level, followed by my index finger hooked over my thumb and turned over at the wrist like a key in an ignition. I’d use the signs for “my grandparents”: a clenched fist over my heart, and the letter signs “G, M, G” to represent “grand-mother-father”. Then, placing two fingers over my right ear, I’d use the sign for “deaf” to refer to them, and to describe myself, I’d use “hearing”: a single digit moved from beside the ear to rest below the mouth. I’d sign our closeness by interlocking my index fingers in the sign that doubles for “link” or “connection”. By puffing air from my lips, squinting my eyes slightly, and rocking my looped fingers back and forth, I’d place emphasis on the sign, the duration, direction and intensity of its delivery giving tone and shape to the meaning it makes.
As a scholar specialising in d/Deaf people’s appreciation and perceptions of music, there is a deep rhythm to Kirkness’s telling. A musician, she’s an aural person, but having grown up as a conversationalist with and interpreter for her grandparents – and later, a sign-language teacher to children – she is, consequently, a visual person, too.
Baby Jessica Kirkness with her grandparents.
Author provided (no reuse)
The sound of her prose in the reading-mind is sometimes magnificent. And the descriptions of her grandparents communicating – with her, with one another – is abundantly, respectfully detailed. Passages such as the one above are plentiful, bound to draw readers wholeheartedly into the narrative of her unique upbringing.
Not shying away from statistics, chronicles and definitions, the book is also instructive. And though Kirkness clearly appreciates the role Deaf culture plays in her life, it’s rarely biased.
By this I mean: if I had a friend whose baby was diagnosed deaf, and that friend had to make a decision about whether or not to give the baby a cochlear implant and therefore the gift of sound, I would give them this book with the intention of providing the pros and cons of Deafness.
A con might be particularised in the following passage, where Kirkness writes about experiencing rude comments and looks directed at her grandparents:
Inside of me, pride and shame were housed in separate but neighbouring compartments. Much as I tried to ignore this fact, they grazed against one another often enough to produce a kind of reckoning in my adulthood. In all the years I tended to the fault line between my grandparents and the world – the contact zones that carried the eternal threat of turning hostile – I’d never thought to acknowledge the feeling that accumulated like sludge in my belly. My strategy was to bury it. Deny it. If I could keep anything negative from Nanny and Grandpa, I would.
Not own-voices, but valuable
Reading a hearing person discuss the negative effects of growing up a grandchild of Deaf adults might raise alarm bells for some. In an own-voices story of Deafness, the story would be written by the Deaf person themselves.
Not following that etiquette is taboo from some points of view within marginalised communities. But I think it depends on your reading of the book.
Yes, this is a story that educates its readers about Deaf culture. But it’s also a story about familial love, told in the wake of loss after Kirkness’s grandfather died.
The passage continues:
But the layers of feeling – the residue of the unexpressed – began to tug at me. I threw myself at the problem the best way I knew. I began to read. From the university library, I sought everything I could from the fields of Deaf and Disability Studies: books, journal articles, online forums. I finished one postgraduate degree and began another, all in the name of excavating something I barely had language for.
There is a sense that signing is the best language for digging through emotion. But because it is not Kirkness’s native language, she’s had to work hard to learn to inhabit it – and it’s paid off. The House With All The Lights On is a product of that work – and a stunning act of gratitude.
This is a story about familial love, told after Kirkness lost her grandfather (pictured, at his wedding to her grandmother).
Author provided (no reuse)
Kirkness refuses to speak of her grandparents as if they are one unit, their Deafness shared. She consistently gives them individual agency. She has drawn them with thick lines, voluminous curves, edgy angles and various colours. She has deftly brought to the page what her Grandpa and Nanny have brought to her life – while also providing insight into Deafness with each anecdote.
One especially memorable sketch shows Granny learning to speak English: the chalk powder placed on the back of her hands, so when she put her lips close and the chalk either moved or did not, she could tell the difference between “p” and “b”. Granny then positioned her granddaughter’s hand on her throat and sounded out “m” and “n” and said, “I learned about sounds through feeling, see?”
Nanny was proud of her speech and of her ability to lip-read, whereas Grandpa only wanted to sign: “To appreciate him fully, I need visuals, for his voice was always carried in his hands.” Kirkness later describes those hands, which turned thousands of pages, as she described his relationship with books:
Ever the autodidact, Grandpa was always reading. He’d frequently consult his encyclopaedias and reference books whenever he found himself wondering about one thing or another. It was a habit he developed in childhood, having found himself excluded, often unintentionally, from family conversations.
The House With All The Lights On is a profound book on Deafness as identity, written by a hearing person who cannot divorce Deafness from the love she feels for her grandparents.
Kirkness’s book sits bravely and beautifully alongside Fiona Murphy’s The Shape of Sound and Jessica White’s Hearing Maud as part of a growing dialogue on deafness and hearing, and on Deafness and seeing.
It is one of the most touching, generous, superbly written family memoirs I’ve come across.
The injustices of growing up disabled
Sam Drummond begins his memoir, Broke, with a scene that does not live in his own memory. His child-aged mother is playing the piano and her mother, who sits beside her, is contemplating how to tell her children she’s dying.
By beginning with his mother’s story, rather than his own, this prologue works as an explanation for why Drummond’s mother might have moved him and his brother around so much – and had so many failed romantic relationships. It’s a signpost to how we should read his story.
Drummond is a disability advocate and lawyer who lives with pseudoachondroplasia, a form of dwarfism that impacts bone growth and joint health.
The injustices of growing up disabled – schoolyard taunts, unfit to play sports, going for a job interview for the first time and striking out before a question is even asked – run throughout, in matter-of-fact prose that avoids the sentimental and resists overindulgences.
Sam Drummond is a disability advocate and lawyer who lives with pseudoachondroplasia, a form of dwarfism. He’s pictured with his mum and brother.
Author provided (no reuse)
If I’m to trust the prologue, then the author’s reliance on a far-from-self-centred narrative is due to a focus on his mother, rather than himself. For example, after he leaves hospital for a surgery involving the breaking and resetting of his legs, he notices his mother’s back pain as she lifts him from the car into the wheelchair:
I realised my Mum was mortal. People had been telling me my whole life that I was deficient in some way, if not directly then in the way they treated me. I had reassured myself I would always have Mum there to make up for my deficiencies. She was a fitness machine. Life had thrown mud at her and she had simply brushed it off. She was a survivor. Yet here I was, at a moment of complete reliance on her. My survival depended on her. And I had glimpsed a chink in her armour. This terrifying thought had not crossed my mind until then: even survivors have an end point.
Read more: Friday essay: the female dwarf, disability, and beauty
Rising above it, but not a hero
Drummond’s struggle with the physical and mental pain of his disability, and with multiple shifts in home and family set-up, is interesting. But at times I found it difficult to pinpoint the focus of this book.
Sam Drummond, with his mum and brother.
At one point I questioned if generational trauma was the focus, but Drummond doesn’t follow through enough with the causes and ripples of his grandmother’s untimely death or his grandfather’s PTSD. Mostly, I read it as a story of survival – of both his mother’s and his own.
Inspiration porn is a genre of memoir that shows the hardships of living with disability, chronic illness or inflicted trauma, so in the end the author can say, “See! I made it out the other side! And you can too if you keep trying!” While the disability community often shuns it, the masses tend to eat it up.
But though Broke follows inspiration porn’s rising-above-it-all plotline, Drummond mostly manages to avoid falling into this genre. His style is pragmatic, rather than straining to inspire.
When describing an afternoon at Centrelink, for example, he writes,
“Mum. Why doesn’t anyone complain about waiting so long?”
“Because we have no choice, darling.”
I looked around at the elderly, the migrants, the other people in wheelchairs, the single mums. Their shirts hung out, their hair was not perfect, their skin was more leathery than Mum’s. But their shoes were now our shoes. The paperwork they filled out was the same as the sheets that lay on Mum’s lap. Their fates were linked to our fate.
Drummond isn’t casting himself as a hero. He’s clear he is one of many coping with systemic prejudices and inadequate governmental support, helping to make up the “we” who are relegated to the end of the line. His opposite, the “they” who don’t even need to be in the line, are everywhere – even (and especially) in his friendship circle:
Mum came in with a large plate of bread, jam and cream. He looked at the creation with an air of distrust. “What is it?” he asked.
“Bread, jam and cream. It’s like scones, just with bread.”
He ate a slice but stayed silent, shifting awkwardly at my feet. […] He had entered my world and I knew it was vastly different from his world of books and fruit and dinner at the dining room table. I had come to accept the differences. It was nice to be in the same world during school hours, but I would never have his life and I had to be okay with that, even if it made him sad or uncomfortable. […] I turned back to the little pink telly.
Mum came in and sat at the piano, looking wistfully at its closed cover.
“Mum!” I yelled. “Can I have some more bread, jam and cream?”
There’s the mother and the piano again: the foundations of his “we”.
In terms of showing the differences and similarities of the haves and haves-not – the “we"s and "they"s – Drummond’s book ticks all the necessary boxes.
But unlike The House With All The Lights On, Broke is not an unconflicted love letter to family. Drummond’s portrait of his mother is in the Edward Hopper style: a tired woman carrying a bucketful of woes, who, at the end of the day, is lonely. His subject, however, doesn’t feel centred: she’s often hidden by the clutter of too many items in the room.
Authors: Heather Taylor Johnson, Adjunct Research Fellow at the JM Coetzee Centre for Creative Practice, University of Adelaide
Hashtag.net.au
