By CB Mako
(Content warning: domestic violence)
When March 2020 arrived, we realised that we had survived another summer. We got our first sigh of relief after the scorching start to a new decade, when Naarm was covered in a dense blanket of smoke due to bushfires. March was supposedly the official start of autumn. Compounded by the effects of climate change—surviving between school days with extreme temperatures (38℃ and above), remnants of smoky haze, and the odd red summer rain—the start of the school year was not easy for both parents and school children.
When my child was formally diagnosed with protracted bronchitis in December 2019, summer was the beginning of a long battle with National Disability Insurance Scheme (NDIS) plan managers for accessible home modifications. Due to climate change, our home needed block-out blinds to help cool the living area from the harsh summer sun and help with gardening for weed and pollen control. We also needed the carpet in our child’s room removed, in order to not aggravate their respiratory illness and minimise breathing problems. We even wrote to our Member of Parliament (MP)—the first member to occupy the new federal seat of Fraser—to intervene on our behalf. Surely, as a migrant and a parent, our new MP would assist us?
But no help came. Instead, we were mansplained. Repeatedly. ‘You’re in a rental’, was their excuse. This came from all ends, whether they were plan managers, NDIS officers, or the federal member of Parliament himself. I thought: was the NDIS only designed for white, privileged, middle-class homeowners with disabled children? Where was the much-needed #disabilityjustice for disabled BIPOC who live in rental properties?
Exhausted battling ableist gatekeepers and bureaucrats about climate change, we moved on—for self-care, for mental health.
With the arrival of a new decade, we decided to make new plans: focus both on my child’s health and mine. First—no longer wanting to be mansplained—we changed our NDIS plan from ‘plan-managed funding’ to a more flexible ‘self-managed funding’. Next, armed with a new parenting paradigm of minimalism, we hired a portable container called a ‘go box’ and had a decade of accumulated, mostly hoarded stuff (fan merchandise and books, gym equipment and hobby scale models) put away and moved out of our three-bedroom, rented unit into the container parked on the driveway. I thought: we need to breathe, to live life with less clutter.
‘Goodbye things,’ I muttered each time as we hauled out stuff, clearing an entire hallway of clutter. This change in mindset—after reading a book by Fumio Sasaki, which I slowly read during school pickups—eventually proved critical. It gave me the perfect reason to refocus in the new decade.
Until we received a call from overseas.
‘We’re on lockdown starting this Sunday (11th of March). Why aren’t you on lockdown?’ On the other end of the line, my kids’ grandparents were incredulous. They were already well prepared with all their medication, food, groceries.
But little did we know that a week later, we would be on lockdown, too. We ticked all the boxes as ‘high-risk’ because of our combined underlying, pre-existing conditions. If we were infected by COVID-19, it would spell even more danger for our entire household.
We had been in isolation before. Almost a decade ago, we were the occupants of an exceptionally clean isolation room at the Melbourne Royal Children’s Hospital’s cancer ward. Since then, items like isopropyl alcohol or chlorhexidine have been staple items at home—each member of the family would make it a habit to always carry a travel-sized bottle of sanitiser and a packet of tissues in our bags.
In the first few days of the imposed COVID-19 isolation—a week before school term break—I had to explain to my elder offspring that experiencing a global pandemic was new.
‘I was born during martial law, joined the march of the People Power revolution; I lived through massive earthquakes, volcano eruptions, and typhoons which flooded entire cities. But never like this,’ I told them, while I continued to search online for face masks and hand sanitisers. What was once readily available had become extremely scarce as privileged people had begun to hoard them in bulk.
We also had to begin rethinking how to clean in a pandemic with an immunocompromised child with underlying heart and lung conditions. Using the ‘holding bay’ of the cancer ward’s isolation room as a guideline, we began to enter our small house from its back door. This led to the laundry room, where we would remove all our outdoor clothes and chuck them immediately into the washing machine, with the cycle on the hottest setting. Then, we would walk across to the bathroom and straight into the shower. This became the new protocol.
Not long after this, medical appointments were conducted online. Our first ‘telehealth’ meeting was with the Royal Children’s Hospital’s cancer clinic.
Screen shot of us in the virtual waiting room,
while waiting for the oncology team to appear online
We ticked all the boxes as ‘high-risk’ because of our combined underlying, pre-existing conditions. If we were infected by COVID-19, it would spell even more danger for our entire household.
Due to the global nature of COVID-19, our supply line of isopropyl alcohol was abruptly cut. ‘This is from the last box,’ our local shopkeeper told me. She handed me two precious bottles of 500ml liquid isopropyl alcohol when I told her that I have a child who has had cancer. Neither our usual NDIS supplier, the local pharmacy, nor even the Royal Children’s Hospital Equipment Distribution Centre could supply us with any kind of hand sanitiser, whether isopropyl alcohol or chlorhexidine.
While I hopelessly searched for hand sanitisers, large supermarkets continued to be emptied out by hoarders and panic buyers. And since we were in a rental unit, we did not have a walk-in pantry, nor did we have the capacity to buy food and groceries in bulk. In a low-income household, we would only be able to purchase food and groceries for the current week. Was this what it meant to be in a pandemic?
Behind the safety of a paywall, I covertly wrote a different kind of story—of another kind of pandemic that few people dare mention out loud. To speak of this would bring shame and dishonour to family, to the clan, and the tight-knit migrant community. Even friends—moreso single womxn, women of colour—would tend to avoid the subject, with furtive stares and accusatory glares: ‘Why don’t you leave already?’ (They really need to read Jess Hill’s See What You Made Me Do to truly understand what I go through).
As the entire family went into quarantine, I couldn’t even physically pick up a book bearing a title that had the same words shouted at me a few years ago. This was at the start of my writing career in 2016, when I began reading feminist texts. Riveted, I could not unread nor unlearn these crucial feminist writings. I devoured these books. Next thing I knew, I was fighting and talking back. But soon enough, the side of my face was pressed on the floor, while a massive fist pulled on my hair, nearly uprooting my hair strands.
‘Where will you go when it happens again?’ asked my psychologist. Neither of us had even considered the possibility of an incoming pandemic.
‘It won’t,’ I replied, too quickly. ‘Besides, I have 24-hour access to my local gym. And my partner is…’ I paused, hesitating. ‘…medicated and seeing a psychologist as well,’ I confessed in a single breath. This would be the last conversation with my psychologist. None of us could have possibly predicted the state-wide lockdown, with the shutdown of all community hubs, libraries, and leisure centres, including the local gym.
With the ready excuse of ‘social distancing’, my children and I separated ourselves from their controlling parent. Under the patriarchal division of labour deeply ingrained in society and embedded into our colonial upbringing over generations, I quietly completed my household chores day in and day out, while helping my Year 4 child with their pre-prepared school isolation activity pack.
In a low-income household, we would only be able to purchase food and groceries for the current week. Was this what it meant to be in a pandemic?
When the coercive parent came home from work—a low-paying ‘essential’ job—it would seem like a thundercloud had loomed over us, spreading like a hurricane, hate carried over from the work site.
Regardless, I had to find a way to distract myself from the anxiety and the arsenic hours that would soon follow. While I prepped and cooked dinner, I put on my Bluetooth headset and silently listened to the audiobook version of See What You Made Me Do. Here, I discovered a whole new set of vocabulary, a unique language for this kind of unspoken, systemic abuse. Under the controlling person’s household, I was constantly hypervigilant, strategising, keeping the peace. I also reminded myself to take my medication first thing in the morning; to make sure not to upset the coercive adult about little things, like making sure the bath mat on the tiled floor was straight and not twisted; to ensure that the cables of digital devices at the charging station were not tangled up in kitchen drawers. There was to be no yelling either, or the neighbours might hear.
Every afternoon, I carefully listened to the rumble and speed of the abuser’s arriving vehicle, how loud the car door slammed shut, how fast the roller door was raised. I would gauge the footsteps on the concrete backyard, whether they were heavy or light, the length of the stride. Every single time, I’d be taken back to my childhood, to the same cyclical hyper-vigilance I developed around my own abusive patriarch.
With the ready excuse of ‘social distancing’, my children and I separated ourselves from their controlling parent.
As I type the last part of this essay, my children and I are hiding inside my older child’s room. I made sure the door was locked. The powerful parent shouted at them earlier, after the younger child had accidentally knocked over a water tumbler with one of their birthday balloons. Water spilled onto the laminated floorboards, drenching some puzzle pieces from a brand-new set gifted to them a day ago.
Huddled in my teenager’s room, we sit on the carpeted floor. I’m soothing both my kids with a tight embrace. ‘It’s just water…the puzzle pieces will dry. Those are just things,’ I whisper. We listen and wait until it’s quiet and safe enough to venture out of the bedroom.
This is how I parent in a pandemic, a very problematic pandemic.
CB Mako is a non-fiction, fiction, and fan-fiction writer. Winner the Grace Marion Wilson Emerging Writers Competition, shortlisted for the Overland Fair Australia Prize, Queensland Literary Awards-QUT Digital Literature; and longlisted for the inaugural Liminal Fiction Prize, cubbie has been published in The Suburban Review, Mascara Literary Review, The Victorian Writer, Peril Magazine, Djed Press, Overland, Liminal Fiction Prize Anthology (arriving in 202X), and Growing Up Disabled in Australia (via Black Inc Books, arriving in 2021).
This essay was made possible through funds from the FWF community and our #PayTheWriters campaign.