We Must Begin

 

August 2020, a bad beginning to the last month of winter. As morning frost turned our garden white, daily coronavirus case numbers in Australia topped 700. And 14 years after my partner went into remission from non-Hodgkin lymphoma, the spectre of cancer re-entered our lives.

Just before Christmas 2006, we’d said goodbye to his 8.6-kilogram spleen – an organ normally weighed in grams that had turned into a massive tumour. As 2007 rolled in, he endured weeks of chemotherapy. Sleepless nights, brought on by enormous doses of steroids, accompanied the poisons injected into his body, leading to yo-yoing weight. We got lost tracing the pin-cushion punctures from syringes and cannulas on his skin. He went missing in our neighbourhood on a night walk to clear his fuzzy brain, having to be rescued from beside a public phone. I resigned myself to the fluctuating emotions any carer goes through: annoyance, gratitude, irritation, anger, love.

At the end of it all, the prognosis was positive. Visits to the haematologist lessened from weekly to quarterly to half-yearly to annually and ended with the specialist saying, ‘I think your GP can manage it from here.’ Life returned to normal; we’d endured the worst. Mortgage payments restarted, new jobs were applied for, holidays travelled, performances enjoyed, meals cooked.

The thing is, once you go through a catastrophic event – whether it’s cancer on a personal level, or a pandemic on a collective level – there is never a normal to return to. It’s an act of wilful blindness, of self-delusion, to think so.

While we’ll never know what caused the lymphoma, we can take a pretty good guess at contributing factors: stress, diet, exposure or ingestion of chemicals. It wasn’t long before we were back in demanding jobs, drinking litres of Pepsi Max, smoking cigarettes. We moved out of the city to reduce these pressures, which now seems now an act of escape rather than a reckoning with some fundamental truths about the way we lived.

So, on August 5, when our GP called my partner back in to discuss a tumour in his bowel, I thought, here we go again.


As the unknown ahead began to preoccupy us, I read Ed Yong’s September cover story in the Atlantic on ‘How the Pandemic Defeated America’. In it, he writes:

The U.S. cannot prepare for these inevitable crises if it returns to normal, as many of its people ache to do. Normal led to this. Normal was a world ever more prone to a pandemic but ever less ready for one.

Yong’s words struck me deeply. But they resonated even more acutely on a collective level. Looking across our wider community, I see an ever-growing longing for the time we’ll return to normal, to our food courts, theatres, malls, and pubs. There is a palpable sense of the ‘ache’ Yong writes about.

The pandemic has given us time to reflect and think. For me, as a queer Indian of colour, the daily graphs, maps and statistics show how the virus has disproportionately spread through minorities and the dispossessed. UN Secretary-General António Guterres referred to this in his 30 July 2020 statement:

The health, economic and political impact of COVID-19 has been significant across South-East Asia — hitting the most vulnerable the hardest. The pandemic has highlighted deep inequalities, shortfalls in governance and the imperative for a sustainable development pathway.

It has starkly underlined how modern economies drive demand and consumption at the expense of equality and sustainability, creating pathways for viral spread. To date, this has been most obvious in the US, and Yong points out how the pandemic has accelerated the Black Lives Matter movement. What’s happening in India is less clear, though I constantly worry about the virus spreading in its slums like wildfire and how exposed my elderly relatives are. Recent numbers seem to be verifying this concern. Closer to home, we can’t look away from its impact on North Melbourne’s public housing towers – the home of refugees, of people of colour.

A week after Donald Trump was elected president of the US in November 2016, philosopher Alain Badiou characterised Trump’s win as a manifestation of the worldwide victory of capitalist neoliberalism. In a talk that remains both prescient and profound, he highlights

the poor people, the people of pro­vin­cial states, the peas­ants of many coun­tries, and also the work­ers without a job, and so on – all that pop­u­la­tion, which pro­gress­ively is reduced by the bru­tal­ity of con­tem­por­ary cap­it­al­ism, to noth­ing at all, which has no pos­sible exist­ence, and which stays, in some places, without jobs, without money, without ori­ent­a­tion, without exist­en­tial ori­ent­a­tion.

Epidemics are part of world history and just in the 21st Century we’ve had SARS, MERS and Ebola. It’s only now, as COVID-19 spreads across Western economies, that we take note. Previously, epidemics had been contained by borders surrounding places with exotic names: Guangdong, Burundi, Congo. Populations that for both Badiou and us, have no existence – people who are out of sight, out of mind. Now the evil viral genie has been let loose across the world, disregarding borders, skin colour, language, using the dispossessed as vectors for transmission.

So, to those aching for a return to normal, I want to yell, ‘Be careful what you wish for.’ Normal is not the place you want to be when the next virus leaps from animal to human. The way we’ve organised society facilitates its growth to pandemic levels. Many refer to COVID-19 as a once-a-century event, looking back to the Spanish Flu as the last example. But by all accounts, we’re not going to have wait a century for the next one. There are cases of the plague in China and the USA as I write this, and, closer to home, there is an outbreak of avian flu in chickens in Victoria. We are talking years.


Normal was not the place we found ourselves in at home. After weeks of severe constipation, my partner finally visited our GP, who promptly sent him off for scans. Within hours, she told him that the CT check revealed an 8cm mass in his large intestine. Perhaps it shouldn’t have come as a shock, but it was. Later, the colorectal surgeon said that if during the colonoscopy he couldn’t see the tumour and take a biopsy, a temporary stoma would have to be attached to clear the bowel before they could do anything else.

None of this was normal. It was confronting and distressing. We could not conceive where all of this would lead us. I cannot envisage someone without healthcare having to undergo this, particularly in the context of COVID-19. I think of the people Badiou talks about, the jobless, the penniless.

The pre-surgery protocols worked, and his bowel cleared for the procedure. There was no stoma needed, for now. Pathology confirmed it was cancer and radiotherapy would be needed to reduce its size. Surgery was still on the cards, even after which, my partner might need a full-time stoma.

These were the facts. What was once embarrassing and shameful became part of normal conversation over dinner. Without knowing our destination, we were already on a road we had not considered. I steeled myself by saying, we’ve been through it before; we’ll get through it again.


What is normal then? Here is what has been normal for me as an Asian in Australia.

Normal is renting an apartment as a student and your fellow tenants wanting you reported to the police – the mere presence of a person of colour officially registered. It’s the job where your employment contract isn’t renewed for no plausible reason, except for a sneaking suspicion, confirmed by the sheepish looks on the faces of those who convey the news, that someone took exception to your colour. It’s the feeling knowing you’ve been unsuccessful in a job interview, after being shortlisted as one of the final two candidates. Where, looking with hindsight and a sense of detachment, you were clearly the better applicant, but the position was offered to a white person with no experience in the sector.

It is a place where my sister, the first female mathematician ever to be appointed Professor at Australia’s oldest university, is mistaken for one of the serving staff when attending functions at the Academy of Science. It’s seeing how COVID-19 heightens the discrimination already shown to communities of colour: Chinese at the start of the pandemic (‘They brought it here!’ and that often-used refrain, ‘Go back home’) and Muslim and African communities during lockdown (‘Superspreaders!’).

This state of normal doesn’t get any better as a queer person of colour. There are the insults growing up – being falsely called ‘abo,’ and ‘paki,’ and more correctly, but no less disparagingly, ‘poofter.’ When dating, it’s getting past the tag: ‘Sorry, no Asians, just a preference.’

These are not the norms I want to return to. Those norms are based on marginalisation, racism and bias.


When lockdown and social-distancing measures start to ease in parts of our society, what can we do, as people of colour, queer or otherwise, to ensure the new normal isn’t just the old with an obligatory facemask added as prop?

I think an affirmation of the meaning of queer is helpful in this regard. Queer has always been a difficult word and concept to define. Benjamin Law attempts it in his introduction to Growing Up Queer in Australia (Black Inc, 2019). For Law, ‘to “queer” something is to subvert, interrogate and flip.’ It’s an unruly, critical energy used to dig, interrupt, disturb and shake up the status quo. I love this notion of queering as an active verb – as opening fields of possibility not necessarily based on gender or sexual orientation, fields that offer a richer, more diverse experience of life.

Towards the end of our first experience with chemo back in 2006, my partner decided he had to go to Mardi Gras. Given his compromised immune system, I didn’t think this was a good idea, but he insisted. Lining up to enter the after-party, he spotted one of his chemo nurses in the queue. Later they bumped into each other on the dance floor in Max Watt’s. Mid-disco track, my partner told him, ‘It’s okay, I’m taking it easy.’ I was heartened his queer spirit wasn’t dampened by his condition. As a leather man, he wanted to flaunt his queerness, to continue to subvert, interrogate and flip, and have a bloody good time. It occurs to me that I don’t need to define this word, it is already us. And embracing the term ‘queer person of colour’ or #QPOC gives me that energy to consider what a new normal might look like.

As Asians, I think this is a key to what we can do to fight against the kind of normal that creates the experiences I’ve described. We are so used to being undercover, buckling down, achieving without disturbing. If you don’t identify as queer, I invite you to become an honorary member and adopt that critical, disruptive force that calls out the brutality of our conception of normal. And if you are queer, to rediscover, to weaponise, as many have already done, that energy. It may seem shameful and embarrassing but needs to become part of our normal.

It is easy to write this exhortation, to ask for the status quo to be shaken up. It avoids the question of what might replace it. I can’t articulate a completely new ideology, even though I can highlight what is wrong with the current one. My hope is that we recognise the pandemic as an opportunity to recalibrate how we treat each other and how we live together. To use this time of lockdown, this time of reflection, as a starting point, even without being able to fully articulate the world we would wish to live in. Towards the end of his talk, Badiou states:

When we begin some­thing, we have not the com­plete devel­op­ment of that thing. But we must begin. We must begin, which is the point. After Trump, we must begin.

It’s here that I disagree with him. We cannot afford to wait for the time after COVID-19, we must begin now.


As spring approached, the coronavirus statistics in Australia started to stabilise. But as August neared its end, the cold of winter deepened. Icy blasts from Antarctica dropped the temperature even more and ice crystals pricked us on our walks.

Back in early 2020, just as the pandemic started, Indian writer Arundhati Roy wrote:

Historically, pandemics have forced humans to break with the past and imagine their world anew. This one is no different. It is a portal, a gateway between one world and the next.

We can choose to walk through it, dragging the carcasses of our prejudice and hatred, our avarice, our data banks and dead ideas, our dead rivers and smoky skies behind us. Or we can walk through it lightly, with little luggage, ready to imagine another world. And ready to fight for it.

The first steps on our new journey through Roy’s portal, the colonoscopy and biopsy, have been completed. As we now confront the familiar cycle of chemotherapy ahead of us, and face a new one, radiotherapy, and adjust to their impacts on our bodies and our lives, our inability to return to normal has started to manifest in small ways. We’ve begun to have more of some things (juicing, fibre, leafy greens, brassica soups) and less of others (cigarettes, Pepsi Max, bad reactions to stress). But through whatever comes, we will keep our queer spirit up. When the next Mardi Gras season arrives, and hopefully it will, we will celebrate that spirit of queer. For now, we’re beginning to take care of ourselves and imagining our new normal, one step at a time.

Atul Joshi

Author: Atul Joshi

Atul identifies as he/him, a member of the queer community and as a person of colour. He's had short fiction published in The Big Issue Australia’s 2018 Fiction Edition, Seizure Online Australia and Ricepaper Magazine Canada, as well as non-fiction in Benjamin Law’s Growing up Queer in Australia and the Sydney Review of Books. Born in Myanmar of Indian parents, he migrated to Australia as a child in 1971. A former classical musician, he works in cultural management and has recently completed the Master of Arts in Creative Writing at the University of Technology, Sydney. He lives in NSW’s Southern Highlands with his queer human family and three dogs, six chickens, four quails and approximately twenty carp and goldfish. (Photo: Heidrun Löhr)

2 thoughts on “We Must Begin”

  1. Beautiful words Atul – and so good to feel connected again to you after all these years, through your writing. Look forward to reading more of you. with love Annie B

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