Every story is unique. Experience the work of seven talented and diverse Australian writers with disability across seven days with Writers Victoria.
Each day at 10:00am, a new commissioned writing piece will be released here on the Seven Days of Writing blog.
By Fiona Murphy
During the last weekend of October, while the sun was high and bright, I boxed up my home office. In a few days I would be driving my station wagon across the state, moving from wide open agricultural plains to a small town nestled at the base of a thickly forested mountain range. I had left this task until last. It seemed easier to scrub and sweep every other room of my rented flat. I knew that I would be slow and sentimental as I organised the piles of paper scattered throughout the office. Each pile contained research and handwritten notes that I had made while writing my memoir, The Shape of Shape.
Some of the drafts are written in a cramped and careful style, each word precise and considered. In other drafts my handwriting grows bigger, looser. I can remember my hand racing across the page, unable to keep up with whatever memory bubbled up.
The process of writing about your life is one of discovery. Even though you’ve lived every moment of it, recalling events and emotions can be haphazard, rather than neat and orderly. Memories can be slow to surface. Others can come in a rush, one connected to the next. More often than not, once I had started writing my book, memories arrived unbidden—ambushing me at the supermarket carpark or waking me in the middle of the night. Whenever this happened, I would jot down each thought on the back of envelopes and receipts. Now, as I sort through my desk, opening and closing each drawer, it feels difficult to throw any scrap of paper away. The writing process, though challenging, had been exhilarating and continually surprising.
When I first started writing my memoir about being born deaf, I focused on what my life was like at the time. I wrote reams about being in my twenties: working; living in share houses; travelling; dating and socialising. I wrote about how my deafness allowed me to sleep despite living with a collective of DJs who practiced for hours each night, as well as my apprehension when asking managers for workplace accommodations and access.
It was only when I started to share my writing with others, that the questions started coming: What was it like growing up deaf? Why did you only begin to learn Auslan as an adult? Why don’t you wear hearing aids?
With each question I returned to my desk and wrote to fill in these gaps in my story. In doing so, I began to realise that so many things that I took for granted—such as needing to use closed captions while watching TV or experiencing listening fatigue—were considered interesting and unusual to others.
Through writing, I discovered that every detail, no matter how small or seemingly mundane, was worth paying attention to and noting down. And while many of these notes haven’t made it into the final manuscript, the act of sitting down to write has shone a light on what is important in my life.
For instance, learning Auslan in my late twenties has become a central part of my memoir. Initially I was terribly embarrassed about this experience. After all, I was not fluent. Not even close. I assumed that I needed to become an expert before I would be allowed to write about Auslan. And so, instead of writing about my own experiences, I looked for books written by deaf people, including Jessica White, Donna McDonald and Ilya Kaminsky. While each story was enlightening and entertaining, none of these stories mirrored my own experiences. Eventually, I realised that there isn’t a ‘correct’ way to write about deafness or disability. I didn’t need to become an expert in Auslan to write my own story. In fact, not knowing the language formed the basis of my manuscript. The next time I sat at my desk, I asked myself: despite being born deaf, why wasn’t I taught sign language?
This simple question sparked a sense of curiosity within me. While researching deafness and deaf education, I learned that it is common for deaf children to be denied access to sign language. Increasingly, many of them, like me, have sought sign language classes as adults. I began to notice and write about how sign language made me feel: stumbling my way through each class; the shy and tentative conversations I had at each Auslan meet-up; the friendships that I developed with other deaf people; the delight of conversing with others in crowded rooms, without feeling lost or overwhelmed; the relief of finally feeling at home within a language and within my body.
Typically, stories about deafness and disability represented in movies and novels are either heroic or grim. These stories tend to follow a predictable narrative arc: the disabled person learns to ‘overcome’ their disability. But, in reality, being disabled doesn’t mean that your life follows a certain trajectory. Every story is unique and deserves to be told. There is power in finding the words to express yourself.
Rifling through the piles of paper on my desk, I’m reminded of all the questions and concerns I had as I wrote my manuscript. The nervousness I felt about writing so openly about disability. But as I slow down and look through each draft, I can see how much pride I’ve developed in my deafness. Hearing loss is not something that I have ‘overcome’. Rather it is something I celebrate through sign language and Deaf culture.
Soon, at the end of March 2021, The Shape of Sound will be published. And even though I have finished writing my memoir, I continue to sit down at my desk and write about what happened during the day—noticing the speckled shells of free range eggs; a conversation with a friend; the feeling of driving out of town en route to my new home. It’s likely that most of these stories will never be read by anyone else, but the process of writing and thinking keeps me engaged with small, everyday moments.
Fiona Murphy is a Deaf poet and essayist. Her work has been published in Kill Your Darlings, Overland, Griffith Review and the Big Issue, among other publications. In 2019, she was awarded the Overland Fair Australia Essay Prize and the Monash Undergraduate Creative Writing Prize. In 2018, she was shortlisted for the Richell Prize and highly commended by the Wheeler Centre Next Chapter program.
Her memoir, The Shape of Sound, is forthcoming from Text Publishing in March 2021.
By Tully Zygier
When I turned eleven, I started attending counselling sessions. Once a fortnight, I sat in a musky, windowless room of wall-to-wall child psychology books and medical journals. This was my sanctuary. For 50 minutes, everything stopped. I didn’t worry about my peers staring and commenting on my appearance. I stopped feeling like my teachers were hounding me for not completing assignments. My mind stopped dwelling on my disability. And freedom of all freedoms — my mother stopped worrying about me. I was finally content and comfortable in my own skin.
Every two weeks, my therapist sat in his well-worn, mustard-coloured armchair and observed as I sat cross-legged at his wooden coffee-table writing my stories into an A4 notepad. We established early in my therapy that talking about my issues wasn’t going to be the best option for either of us. At eleven, it was hard for me to find the words and concepts to articulate my frustrations about living with a disability. It was hard enough being on the cusp of my teens without being dragged down by a chronic illness like Familial Dysautonomia. That’s how I started to write my stories for the very first time. This little room was my safe space. Here I lived out my fantasies with paper and pencils. No censoring. For 50 minutes, I was a writer creating a world in which I was the lead rather than one of the extras.
Halfway through my stories, my therapist would always ask me a question: “Where is your story heading?”
Back then, I said, “I’m hanging out with the cool kids”. Am I still trying to head in that direction today, as I continue to write my story?
Back then, I was obsessed with the Baby-sitters Club. Reading those books, and writing my stories, I became one of the girls getting together after school and gossiping about their day. I went on adventures with them. We talked through problems and supported each other. When one of us met a boy we liked, we dissected every little detail about him, and came up with schemes to run into the him accidentally, and make him finally notice her (in my mind, me).
Once those precious minutes came to an end and I had to exit from the storytelling to the reality of my mother’s car parked out the front waiting for me, an old familiar feeling came to hang out uninvited — nausea.
As I stood at the curb waiting for the traffic to clear so I could cross the road to where my mum was parked, I once caught a glimpse of her wiping a tear from her eye. I wondered if it was over the book that she was reading — The Joy Luck Club — or if it was for me. The fortnightly drive to my therapy session, the 50-minute wait and the unnatural solitude for this gregarious woman surely percolated her worry about me. I know it wasn’t not my fault, but I couldn’t help feeling guilty as I watched her.
She never drove me straight back to school, Post-therapy I was vulnerable and she knew it was too soon for the schoolground looks and stares and whispers. What I needed was cheering up. For her, the most effective therapy for cheering up a sad soul was food, glorious food, and what better place to lift my spirits than University Cafe in Carlton, where the spaghetti bolognese was to die for. Without a word, she turned on the ignition, hit the accelerator and we headed to our fortnightly haven where the spaghetti bolognese would, without failure, make me swoon with a red hot flush of delightful joy. Mum, on the other hand, would always choose soup of the day to keep the calories away, but she’d inevitably sneak a slice of bread (or two) and a lashing of butter — that’s when her joy and delight would kick in and align with mine.
But I knew The Question was coming. Mum would finish her soup, put her spoon down, and her eyes would rise to meet mine.
“So, Tully, what did you talk about in therapy today?”
Glum twirling of my fork in my spaghetti quickly replaced happiness.
Keep it together. Don’t lose it here in front of a room full of strangers. Don’t lose it in front of Mum. Talking about it just brings me down.
Mum gently coerced me on.
“I know it’s hard to talk about it but it’s better out than bottled in.”
I don’t want to talk. I want to be part of Baby-Sitters Club. I want a group of friends to spend my afternoons with instead of sitting in my bedroom binge reading and living life through other people’s stories.
Mum leaned over to caress my cheek.
“Hey darling, what’s going on in your head?”
“Just my obsession with the Baby-Sitters Club.”
“Why are you obsessed with those books?”
“You know, the antics they get up to seems like so much fun.”
“What kind of antics?”
Chasing boys. Oh, how I wish that boys looked at me the way the boys look at Stacey and Claudia. If only they could look past my frizzy hair, my freckles, my scrawny legs.
“Tully? What kind of antics?”
“Just kids being kids. Having fights and going to slumber parties and ...”
If only I was invited to slumber parties. If only the kids in my class thought of me as their equal.
“And nothing, Mum. I just think it’d be cool to be part of a club like that.”
As if that is ever going to happen.
Mum fell silent. She’d always been one of the girls in the popular clique. What could she possibly say to show she understood me?
“Oh Tully, I wish I understood what you’re going through. I wish I could help you. I wish the kids at school could see you the way I see you. I wish I didn’t carry FD. I wish that I didn’t give it to you. I wish you didn’t have to go through this.”
I kept my eyes on my spaghetti, knowing I was going to cry. I don’t cry tears like everybody else. That’s how it is with FD. Instead of tears, I get hot flushes of emotion; and at that moment of recognition, it was sorrow.
Mum took my hand and brought us both back to reality:
“Eat up Tully, you need the energy to go back to school and face the day.”
What I really need is a new, functional body to help me face every day. Spaghetti energy isn’t going to make that happen.
“it’s fine, Mum. I’ll be okay,” I reassured her, my eyes still focused on the spaghetti.
“We need to go shopping this week, Tully. We need to buy bathers and clothes for Byron Bay. Maybe some shorts and a cute little dress for dinner? Or how about the pink and red striped dress we saw last week at Myer? It would look lovely with your white sandals and white headband.”
As if a pink and red striped dress is going to cover my small breasts and my back-brace. People will still see me.
“I have enough clothes Mum.”
“Which reminds me -.”
Mum kept talking. It happened whenever we got to the moment of truth in our conversations — the moment she faced the fact that she couldn’t change things, and I needed to handle it myself, in my own way.
“You need a haircut before we go. Do you want a coffee? Why not get a danish? Maybe a chocolate brownie? Nothing too big, just a trim to get rid of the dead ends. It will frame your face and give your curls more definition. It will draw attention to your beautiful hazel eyes.”
“My hair is fine mum. I don’t need a trim…”
Mum kept talking.
“You really do need to eat more, sweetheart. If you ate more you would have lots of energy and wouldn’t get so tired by the end of the day. Let’s grab the waiter’s attention so you can order something else.”
“No mum, I’ve had enough…”
“But we need you to keep your energy up and your fluid intake. You’re not drinking enough water. Here, have a glass now and I’ll order some dessert.”
Poor mum, your job is to support me but no matter how much you try you are always going to fail because I’m on my own in this.
“I’ve had enough to eat. You don’t have to keep pushing me. I’m okay, Mum.”
This time she listened. She took a breath and waited for me to finish the last strands.
As I lifted another forkful of spaghetti I couldn’t avoid looking up at my mother, and I saw something about her that I never noticed before. She looked helpless. All she could do was offer me a chocolate brownie.
“You don’t have to eat the brownie now but we’ll have it later.”
“Yes, let’s, Mum. That’d be great.”
I couldn’t help but smile at her foodie-therapy. For all the sorrow within, I was always comforted by her presence across the table.
Food was her way of saying, “everything will be alright”.
Tully Zygier (BA BSW) works in Communications at VALID, one of the peak advocacy organisations for people with intellectual disabilities in Victoria. Tully was born with Familial Dysautonomia, a neurological condition carried in the recessive gene in Ashkenazi Jews. Tully uses a walking frame and recently purchased a motorised scooter through the NDIS. Tully enjoys movies, seeing her friends and family, cooking and writing. You can read some of her work on her blog.
By CB Mako
The year is 2018:
<Jumble of words; sounds of mumbling>
Me, replying from across the large oak table, ‘Yes, at Digital Writers Festival.’
<laughter erupting> ‘We just said that!’ they answered back and gave me a what’s-wrong-with-you look.
‘Sorry, I can’t hear well,’ I replied in a sheepish tone, and pointed to one of my ears.
My eyes panned the cavernous lobby with high ceiling.
High ceiling, lots of echoing, I could barely hear.
I realised, amidst the multiple chatter,
my hearing loss seemed to have gotten worse.
I felt disconnected, like everyone knew something I didn’t. When others around me announced they were withdrawing from social media interaction, Twitter was my link to the world. I followed accounts on inclusion, those that tweeted advice about invisible disability, about how to talk to hard-of-hearing people, and Australian Sign Language.
Through social media, I learned a new word not uttered in everyday life, but often felt: #Ableism.
On social media platform, Twitter:
@Aus_Hearing would you offer staggered payments or @AfterPayAU for hearing aids for those with borderline hearing loss? #AskingForAFriend a pair of hearing aids almost $800 (T T)
7:54 PM - 16 Feb 2018
@Aus_Hearing Feb 17
Replying to @cubbieberry @AfterPayAU
Hi! You are best calling our free audiology service re this - business hours live chat here: www.hearinghelp.com.au or call 1800 740 301 - they can advise 😊
12:49 PM - 17 Feb 2018
Replying to @Aus_Hearing
@Aus_Hearing Thank you for replying xo
3:15 PM - 17 Feb 2018
Replying to @cubbieberry
No worries at all! Please let us know if we can help further. Have a lovely Sunday ☺️
4:01 PM - 17 Feb 2018
I did not ring the service provider. If I rang, my call would have been forwarded to a call-centre. They would give me a standard reply to go visit the nearest Australian Hearing clinic.
Why was I too embarrassed to admit I had hearing loss? I was also too embarrassed to admit I couldn’t afford to buy a pair of the latest technology hearing aids, which suited my level of hearing loss.
You don’t look disabled enough1—
#Ableism strikes again.
In the year 2019, pre-pandemic year:
‘It’s hereditary,’ my mother stated in a matter-of-fact tone. She and my father were visiting us from overseas.
‘Your sister—she is forty-two years old this year—has trouble hearing. Your cousin, Moira, who is five years older than you, is wearing hearing aids donated by your uncle.
I was surprised to find out that my generation already had hearing problems.
‘Did you know your father’s hearing aids cost one hundred twenty thousand pesos a piece?’ She emphasised ‘a piece’. This meant that a pair of the state-of-the-art, newest, and latest hearing aid devices were almost a quarter of a million pesos – over $7000.
My brows raised in surprise. The Philippines’ healthcare system was patterned after the United States of America, its former coloniser. Universal health care didn’t exist there. Decent healthcare was available through private healthcare insurance or people who could pay. No wonder carers and disabled bloggers from overseas had a different tone in their advocacy posts versus Commonwealth countries, like Australia with its universal healthcare system.
‘Did you notice it?’ One of the writers of colour on social media asked me through a private message.
‘Notice what?’ I typed back.
‘Disability is so white,’ she replied. ‘Look at the pictures in the article about mental health. Did you notice that the images of women and children were all from a white, mainstream narrative?’ The author, writing from Sydney couldn’t contain herself. She rang me instead. ‘Why were people of colour in the disability and mental health narratives excluded? Why were we being erased, like we didn’t exist ?’
‘I noticed,’ I replied, trying not to sound too defeated. ‘The authors writing about mental health were all white women. And when disability is included in literary festivals, the disabled representatives are from white backgrounds.’
She let out a heavy sigh.
I could feel the frustration all the way from Sydney to Melbourne. The same narratives repeat themselves all over Australia.
‘Did you see the latest compilation from one of the literary journals?’ she asked. I knew straightaway which one she meant. The choice of writers was formulaic: white man, white man, person of colour, white woman, white man from overseas, Aboriginal woman, Disability/Mental Health representative (a white woman), white man, white man. ‘If the publisher even considered diversity, their idea of diversity, when including disability, was a white woman,’ my friend added.
‘Representation matters, even inside disability.’ I said, ‘disabled people of colour must be included in the narrative.’
We were frustrated, exhausted. All I wanted was to hug her and tell her she was not alone. When our phone conversation ended, I slumped in my chair. I needed to write more about this.
Meanwhile, I wondered how a writer of colour — who was also a full-time carer to a disabled child — could raise money to buy a pair of hearing aid devices. I didn’t want to be left behind. And yet, I was among those who were falling through the cracks.
1 Caley Farinas and Creigh Farinas. “15 Common Phrases That Are Way More Ableist Than You May Realize”. The Body Is Not An Apology, (15 Feb 2018)
CB Mako is a founding member of the Disabled QBIPOC Collective. Winner of the Grace Marion Wilson Emerging Writers Competition, shortlisted for the Overland Fair Australia Prize, and long-listed for the inaugural Liminal Fiction Prize, Cubbie has been published in The Suburban Review, The Victorian Writer, Peril Magazine, Djed Press, Overland to name a few; and in Anthologies 'Collisions: Fictions of the Future' (Pantera Press, November 2020),
'Growing Up Disabled in Australia' (Black Inc Books, February 2021).
By Binh Pham
Whenever a catastrophe happens, we all try to find ways to explain its occurrence to ease our mind and help us accept drastic consequences. My sudden loss of vision during my trip to Vietnam shocked people and inevitably I became a target for many quirky comments and advice.
My sister and brother showed their concern by bombarding me with their wisdom. “You always do too much. You never rest, so your body just collapsed.”
“I went to the gym three times a week. I was very fit before this happened.”
“But your mind never rests. You are always doing something,” they insisted.
“I’ve travelled for three weeks with both of you, and I’ve done the same things you have.”
“No, you tried to learn how to play the shakuhachi on Thursday evening.”
“How could watching a YouTube video for half an hour make me blind?”
They kept a dubious silence. Here they were fully sighted while I was nearly blind. Who would people believe? I had lost all my creditability.
At the airport, Vietnam Airlines allocated two newly recruited female employees to lead me to the terminal gate. After enquiring about my sudden vision loss, one said, “Many Vietnamese expatriates fall ill while visiting Vietnam. They’ve gone soft and can’t cope with living in Vietnam anymore.”
Back in Australia, I spent two days in the Emergency Department at the Eye and Ear Hospital. I barely kept my head above water as I went from one clinic to another without being able to see. Finally, I was admitted to the Vision Ward. A woman approached my hospital bed. “I’m here to collect your blood samples for tests,” she said, then reached for both of my hands. “I would like to pray for you to recover your sight.”
She closed her eyes and softly recited her prayer. I listened but did not feel moved by this communication with a god that I did not believe in. I calmly thanked her for her good will. I’d experienced the same thing many years before at the Royal Melbourne Hospital when I had a brain tumour removed. A volunteer had come to visit just before my operation. She gave me an orange and said solemnly, “It’s God’s will! Everything happens for a reason.” I was so angry that I nearly chucked the orange at her face. How could she be so insensitive to say such things to a someone trying to fight for her life? I stared stonily at her until she awkwardly left without another word.
Although the nurses expressed some compassion and sympathy, their professional training prevented them from speculating wildly on the cause of my predicament. The fun really started when I got home.
One fellow writer in my writing group was adamant that psychology was the cause: “You had not returned to Vietnam for many years, so you suffered a shock.”
Another writer said, “God only gives what one can take.”
I stared at her in astonishment. “Do you mean because I have been resilient enough to cope with some terrible mishaps in my life, He has now raised the bar higher? How could a god be so mean?”
Although inflammation of the optic nerve prevented me from receiving visual signals, my eyes still appeared normal to other people, making it hard for them to believe that I was nearly blind. I felt obliged to explain my blindness to the drivers who delivered my Meals on Wheels. One woman said, “Maybe the stress of travel manifested itself as a serious physical problem. I had to buy a dress for a wedding and the stress made my skin break into a rash.”
God set the bar really low for that lady, I thought.
Binh Pham is a 2020 Write-ability Fellow. She enjoys writing short stories and children’s books. Her stories were short listed for the 2018 Ada Cambridge Biographical Prose Award and long listed for the 2018 Harper Collins Aspiring Writers Mentorship Program. As ‘Binh’ (meaning ‘Peace’), she paints wild landscapes and children’s portraits. Currently, she is working on a collection of short stories inspired by her childhood in Vietnam.
By Christine Davey-White
“Why do you have a scar?”
“Why do you have a scar?”
She leaned forward, prodding my stomach.
It wasn’t the first time my daughter had asked about my shape or the myriad ridges etched upon the skin by the surgeon’s scalpel. She would repeatedly insist on answers, needing to know her mother. There was a presumptuousness to her questioning and touch that I loved.
Like before, I told her the story of my birth, the deformities across my digestive system and the ongoing impact.
“Remember…” I said. And she would nod, confirming her understanding of the answers she had been given previously.
Our relationship is vastly different to the one I had with my own mother. Firstly, it has lasted longer – my mother died when I was a child – but the key difference was the type of conversation and touch shared between my daughter and me.
Four days before my mother died I told her I loved her. She replied as any mother would I suppose, reiterating her love for me, but my eleven year old self struggled to accept her words. My memories of her are clouded by images of her taking me to hospital, administering treatments or praying for my healing. I watched her treat my siblings differently and was reminded every day of my difference to others in my family.
I had listened as she spoke of my disability and illnesses with others, answered questions these strangers had about my condition, and reserved her touch of me for when I was being treated. I do not remember hugs or kisses, but do recall the medicalised touch that filled my life.
My mother was, after all, my carer and the intimacy of a mother’s touch was not something I could use to evidence her love for me. Instead I have a movie reel filled with her hands administering a regimen haphazardly designed to get my digestive tract working, or clear my lungs of mucus. It is peppered with the admonishing sting of the punishment I received from my father when my body did not work as expected.
There was no comforting hand, nor a tender voice soothing tears.
Many people will tell me the love was there, but my memories also include my parents sharing details about my life with others. I was a conversation starter – a point of interest to the adults in the room – and the polite exchange of my details was not reciprocated by others.
I did not hear prideful boasting about academic or sporting progress, instead there was a litany of inconveniences caused, pressures on family, and wishes for wholeness within my body.
My daughter is not aware of the depth of this scar. In her mind I am valued and loved – my disabilities do not become a part of the reasons for or against any love she has for me.
“At least you’re here now,” she says, smiling up at me.
A new memory – one to replace the old.
“Yes. At least I’m here now.”
Christine Davey-White is a writer living in the Dandenong Ranges and teaches English in a secondary school. She is a recipient of the 2020 Writer’s Victoria Write-ability Fellowship, and wrote the teachers’ notes for “Growing Up Disabled in Australia” (Black Inc. Books). Christine is currently writing her memoir, “Don’t get burnt by the Holy Water”.
By Anat Bigos
My name is Anat Bigos. I had a traumatic car accident while driving in 2004, resulting in an Acquired Brain Injury. Prior to this, I finished my double degree studies at Monash Uni in Arts/Business (marketing) and I was looking forward to my future plans. I’d spent a year as an exchange student in Chile and I really enjoyed travelling around the world.
I still speak a few languages and luckily, this part of my brain was not overly affected.
After my accident, I spent 3 months in a coma and one year in rehabilitation. My balance no longer works very well, hence I now need help with walking. Also, my speech isn’t clear, my memory isn’t working very well and many things I do are quite slow.
It’s true that I have lost many abilities but luckily, I still enjoy writing. Right now, my iPad is my best friend, but I try not spend too much time with it! I wrote the words below while sitting in “iso”:
It’s quite easy to feel rundown at the moment, especially as a disabled person. Most people in this world have at least one problem. What I’ve seen and heard, is that some people can speak for hours about their problems!
It is true that many people with an acquired disability like mine often feel extremely lonely. This is because they’re battling their new-found difficulties, while their previous friends have moved on in their lives.
Personally, I have lost many things such as the ability to walk, balance and remember well, but luckily, I haven’t lost my positivity. What makes me happy is the knowledge that it’s so easy to smile. A smile doesn’t cost anything and is an act that can be done on your own. Laughing with yourself or at yourself is easy too.
During the last few months, many people have been drastically affected by the Covid virus and while it’s difficult to speak favourably of a pandemic, it’s not so hard to become accustomed to this lockdown lifestyle, if you aren’t used to leaving your house very often.
For me, the simple act of waking up healthily every day brings me joy! This statement can seem ridiculously simple, but it’s such a great feeling to know that I can be happy with the right mind-frame! I really adore reading a good book. It’s great to read about other people’s lives. An important part of staying sane at home includes watching my favourite TV shows and getting some free endorphin hormones, along with a little bit of exercise - ideally in the sunshine!
People should always remember what they have rather than what they don’t. This works for me.
Anat Bigos is a writer who completed a double degree in Arts/Business (Marketing) before her life was disrupted by a car accident in 2004 which left her with acquired brain injury. Sharing her experiences through writing is a vital part of Anat's life.
By Jax Jacki Brown
‘’I feel sad…like the trees,’’ my 2-year-old says to me, looking mournfully out the window into another gusty cold winter’s day, clouds looming overhead, threatening rain.
“Why do the trees feel sad, honey?’’ I ask. ‘’Don't know. They just sad’’ she replies.
‘’Maybe they need us to go out there and give them a hug, hey? People don't hug trees enough. Let’s put our jumpers on and go give one a quick cuddle before the rain. Come on, quick, quick, they are waiting!’’
I help her get her arms into her jacket and bend over in my wheelchair to zip it up. It’s always a challenge for my hands to hold the zipper in place with her excited wiggling but we manage. She insists on putting on her golden sparkly gumboots and races out into our front yard to the orange tree near the front gate. Throwing her little arms around its trunk and pressing her face into it, she kisses it, softly.
‘’It too windy!’’ she yells towards me as I wheel across the lawn, my front small wheels pressing into the soggy grass, making progress slower than usual. ‘’I know,’’ I say ‘’I think it’s going to rain, there might be puddles soon! “She loves puddles. Hunting for puddles is one of her favorite things to do, one of the few adventures we can have together in this long, seemingly never ending Covid19 winter.
The rain starts to spit and it’s time to ‘’Take cover!’’ she yells, so we retreat to sing songs to the rain under the porch and watch as her favorite puddle slowly forms at the base of my ramp.
Winter has felt different this year, or maybe I have felt it differently, experienced it less, been shielded from it. I haven’t had to wheel from home to the train station hoping to make it in-between downpours only to be caught out and arrive at work soggy and bedraggled.
Time has felt different too. Covid time has stretched on, and on and on… The usual markers of time, the things we look forward to, like little holidays or weekend getaways, catch-ups with friends or family, just haven’t happened. Birthdays have come and gone marked only by zoom celebrations and trying to remember to send presents in the mail weeks in advance in the hope that Australia Post will be able to deliver them in time. My partner had her birthday and we celebrated, just us three, our kid’s soft toys marking the spaces on our dining chairs where our friends and family would usually gather. We promised to have real birthday parties with everyone we’ve missed as soon as we could and wondered how long that would be.
We wait for the train, excitedly watching it approach and come to a stop. We haven’t been on a train since March and it feels wild, risky and thrilling to be going somewhere that isn’t on foot. I tell kiddo that we are lucky because we get to say hello to the train driver as they have to get the ramp out to enable me to board. ‘’Hello! We are just going 3 stops, sorry.’’ I tell them as they get the ramp out and place it across the gap from the platform to the train. ‘’I’m sorry it’s such a short trip, we need to stay in our 5k, but we are very excited to be on this train!’’ My kid beams at the driver, and they say ‘’No worries, have a great trip!’’ as I roll on. There’s only one other passenger on our carriage and they are up the far end. It’s strange to see a train this empty and be hyper aware of the proximity of other people even though we are all diligently wearing masks. As we disembark, I remark to my partner ‘’Who would have thought at the start of this year that going 3 stops on a train would have felt like the biggest adventure?’’
I wonder how long it will take me, or all of us for that matter, to not be overly cautious. If what’s happening in other parts of the world is any indication, people will be so desperate to re-connect, to gain some sense of their former lives and de-stress that they will throw caution to the wind and hope they are lucky and don't catch Covid. The increased risk of serious illness or worse for many people with disabilities if they contract it means that many are really fearful of coming back out in to the world as restrictions ease. Connection was found online. No one could go out, everyone was stuck at home, temporarily we were all experiencing a lack of access, a restriction of movement.
We need to be mindful that a return to ‘normal life’, to a ‘Covid normal’ privileges those who do not routinely experience barriers to accessing buildings, transport, employment and education, and presumes we all have the same degree of access to everyday society. This is not true for people with disabilities. We experience access barriers every day and greater risks from Covid than many non-disabled people. We need to be mindful of the ways normative ideas of health which center non-disabled bodies and minds creep in to the language which is captured in the phrase ‘Covid normal’.
We walk and wheel to kiddo’s favorite playground just within our 5k boundary. It has a model train and a slippery dip and, as luck would have it, a big puddle on the edge of the playground. We’ve stowed kiddos’ golden gumboots under the pram and manage to contain her long enough to wiggle them on her before she makes a run for it and a massive splash! I worry, like many parents, about the impact this strange and challenging time has had on my kid but we are lucky that she’s of the age where she throws her whole self into things, boots and all, and happiness can be found in small moments of puddle jumping!
As we tentatively begin to emerge from our houses, catch up with friends and family and reconnect, I am both excited and nervous making that awkward transition from months spent on phone or video calls, conversations cutting in and out with bad connections, to an in-person, real life space where there is no buffer of a screen. I notice my social anxiety has ramped back up, as I’m sure it has with many others, and I wonder how long it will take before a socially distanced picnic in a park doesn't feel exhilarating but just something low key to do on a nice spring day.
The trees are no longer sad according to my kid. ‘’They dancing” she says as the wind sways them. The trees are filled with the fresh hope of a new spring season, all green and lush, busting with life, glad that winter is over and spring has finally arrived. I wheel around our neighborhood with kiddo on my lap peering up into their leaves trying to spot hatchlings, plucking new flowers from fence lines and breathing their scents in. Spring, with its temperamental weather and its frequent down pours is a great season for puddle hunting!
Jax Jacki Brown (they/them) is a disability and LGBTIQA+ rights activist, writer and educator. Jax has written for Junkee, Daily Life, The Feminist Observer, Writers Victoria, ABC’s Ramp Up, Hot Chicks with Big Brains, and Archer Magazine: The Australian Journal for Sexual Diversity. Jax is published in the following anthologies: Queer Disability Anthology (2015), Doing It: Women Tell the Truth about Great Sex (2016), QueerStories: Reflections on Lives Well Lived from Some of Australia's Finest LGBTIQA+ Writers (2018), Kindred: 12 Queer #LoveOzYA Stories (2019) and Growing up Queer in Australia (2019).