'Excavating Something I Barely Had Language For': Two Memoirs Of Disability And Family Explore Deafness And Dwarfism

Author: Heather Taylor Johnson

(MENAFN- The Conversation) 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.

These memoirs focus not just on living in an othered body, but on family. Jessica Kirkness's family photos are shown. Author provided (no reuse) 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.)

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:

Read more: Henry Lawson and Judith Wright were deaf – but they're rarely acknowledged as disabled writers. Why does that matter?

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:

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:

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.

Read more: COVID has brought Auslan into the spotlight, but it would be wrong to treat the language as a hobby or fad

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:

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,

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:

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.

The Conversation


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