February 2021


Nightclubs, pandemics and our real selves

By Micheline Lee
‘At the dance’, a painting by Micheline lee

At the dance. © Micheline Lee

For some in the disabled community, it wasn’t long after COVID hit that the all-in-this-together sentiment started falling apart

Living in a pandemic reminded me of my younger nightclub days, a time when I’d think to myself, You’re in the jungle now.

It was before my motor neurone disability had progressed too far, and I could still pass as able bodied if you saw me sitting on a lounge. We usually arrived at the nightclub before the 11pm crowd filled the place. I would slide into a seat at a table, and a friend would put my wheelchair away somewhere out of sight. I would arrange my already too thin legs, my only slightly crooked torso and some slinky little number I had on into something I hoped resembled an able-bodied hottie. Now I just had to concentrate on not making any weak or awkward movements. It never took long. It was amazing – guys looked at me. You know, that wolfish look.

They would sidle over, shout something beery in my ear over the music, and try to get me to dance. Or, between bands, they would sit next to me and talk. It was so exciting and so terrifying. A few times, when someone seemed nice, I decided to risk revealing myself. To the guy who asked if I wanted to come outside for a smoke, I said as breezily as I could muster, “Sure. Do you mind just getting my wheelchair behind the door next to the bar?” I had to repeat myself a few times, and then he started apologising and backing away. Another one stuck around after he found out, but all of a sudden turned from wolf to concerned citizen.

I always wondered what exactly it was that caused the change. I was the same person. Were these guys simply products of a society that favours narrow ableist stereotypes? Or was it more inherent – something biological? They were there to pick up, not to find the mother of their offspring. And yet, at some deep primal level, maybe red lights were going off warning them: Stand clear – Defective! Threat to survival of the species – Stand clear!

At the start of COVID-19, more people smiled at you in the street, and neighbours who had hardly spoken a word before were offering to share their baked goods and help out with shopping. But by the end of April, the renditions of “We’re all in this together” were beginning to sound a bit twee. About 7000 people were dying each day from COVID worldwide. Scenes filled my head: a man suddenly drops to the ground on a crowded street and people steer clear; long lines of ambulances are turned away from overfull hospitals; an overwrought nurse is bent over, howling; a disabled teenager in China is found dead after being left for six days without the help he needed to eat when his father, his sole carer, was forced into hospital quarantine; millions of migrant workers are made desperate, fleeing on foot from Indian cities that had locked down and shut them out of any means to support themselves.

Hospitals in Australia weren’t overrun, but the numbers were rising and there was the feeling that anything could happen. I had a good job, family and friends who were close, and was actively involved in the community, and yet I was feeling more insecure about being not just disabled but also Chinese. “Take your virus home yellow dog” was sprayed in jagged letters on a fence a few streets from me.

As a person at higher risk of dying from COVID-19, I was supposed to be isolating. Except for my half-hour walk each day, I stayed home. But isolation was impossible, since disability support workers were coming into my home every day, getting up close and personal, helping me in the bathroom and getting dressed. They brought with them exposure to contact from their own home, as well as from the homes of all the other clients they assisted. At least I had the option for my support workers to continue. I knew of other people with disabilities who had lost the support they needed and were even struggling to get out of bed. Their workers, scared by the risk of infection, had stopped coming.

I couldn’t even buy the face masks, gloves and sanitiser needed for protection. It was first come, first served. The people who could, emptied the shelves. I listened to the COVID policies announced by the federal government, but there was nothing that included us. In fact, the usual sign-language interpreting that accompanied government announcements had been forsaken. It seemed that we had been forgotten.

How chilling it was to hear people speak of COVID as an old and sick person’s disease that should not hold back the rest of the community. Trump’s America was the main culprit, but it was easy to discount that as extreme. Other countries displayed similar views despite their shared commitment with Australia to human rights. Discreet calculations were being made about whether a higher death rate among older people might be acceptable if it led to faster “herd immunity”.

In Sweden, schools and businesses were kept open, and there was no mandatory social distancing or mask wearing. Scenes of Swedes congregating on the grass in the sun and revelling in crowded cafes and bars stood in stark contrast to those at aged-care homes. Here, older people were ravaged by the virus, locked in, banned from having visitors and not allowed access to hospitals. People were dying in Sweden at a rate several times higher than in neighbouring countries that imposed restrictions. More than a third of these deaths occurred in aged-care homes. In Australia, a vocal few protested that youth, our economy and our freedoms should not be sacrificed for the protection of a minority. At this stage, we were not following Sweden’s approach, but I worried about what would happen if things got worse.

I worried also about what would happen if COVID infections escalated to the point that our hospitals couldn’t cope. How would we decide which patients to save? Already, this predicament was being played out in Italy, the US and other countries, with the disabled and the old being pushed to the back of the line. It is often presumed that people with disabilities have less chance of survival and fewer reasons to live. In some hospitals, these presumptions have been formalised into official policy – in Alabama, hospitals were instructed to deny ventilators to patients with “severe or profound mental retardation”.

Even when we’re not in a pandemic, people with disabilities have had to fight for the right to treatment. Despite the richness of their lives, people with cognitive disabilities have been seen as better off dead than disabled. What if you were First Nations and disabled, or in jail and disabled, or all three? Such multiple disadvantage would mean a doubling or tripling of risk of being denied treatment.

I love life, and so do my friends with severe disabilities. We appreciate what we can do and give, and what we can experience. Often we have to fight for it. I am shocked when I have to convince other people of this, and when I see that they can’t imagine themselves being happy in my shoes.

In the past three years, I have had to fight for treatment myself. Spinal muscular atrophy destroys motor neurons, leading to muscle wastage and a shortened life span. There is a drug available that can stop the progression of this disease, but in Australia, on the grounds of a cost-benefit analysis, the government is only making it available to children, not adults. We adults are forced to prove we are worth the cost, when we have already been weakened, and have fewer years ahead of us.

Often dogs chase me and snap at my wheels. Before COVID, this was not an issue. Whether it was a pit bull or a poodle, I had developed a method of dealing with them that always seemed to work: stop and keep calm. Not just act calm, but actually be calm. As I’d often heard, dogs can smell your fear. I would look away, try to sit with poise and avoid looking weak or injured, since the instinct in the wild is to pick off the weakest in the herd.

In April during lockdown, however, a strange thing happened. My method started to falter. With each dog that came near, I found myself panicking. One morning, a blue heeler came at me. I knew I had to stop; instead I pushed my joystick full tilt and bolted. The owner strained to haul the dog back. After that, I avoided parks with off-leash areas.

I feel sure now that my loss of nerve around dogs was symptomatic of the broader anxiety I was feeling about my place in the community. Was this to be the reality when the shit hit the fan – everyone for themselves, survival of the fittest? Should I start preparing – make my own survival plan, stock up and prepare my own oxygen equipment because I wouldn’t be able to rely on getting into hospital? Or was I being selfish? Should the weak sacrifice themselves so they don’t hold others back – like the older woman in The Hunger Games who threw herself to death in the force field so that others could escape without waiting for her?

In the days when we could travel by plane, most airlines followed a standard procedure for disability access. Half an hour before other passengers boarded, ground staff would transfer me to my seat. Once I was settled, a flight attendant would come over, neat in their freshly ironed uniform, and lean over the seat in front of me. First the chitchat, then they would launch into the directive they had come to deliver. “In the event of an emergency evacuation, stay where you are and one of us will come to get you once everybody else has got off the plane. Any questions?” They would look at me and wait for my acknowledgement. Most of the time I just nodded, already exhausted and stressed from the effort to get myself, wheelchair, batteries and parts on the plane.

Once, I did say to a male attendant that it didn’t seem fair that people with disabilities should have to go last and have less chance of survival. “And it’s fair to hold everyone back because you’re obstructing the aisle?” he retorted. He insisted that I had to accept the policy if I wished to fly with them.

After this, I googled “disabled+emergency+evacuation+aeroplane”. The search returned a 1989 aviation safety report for Air France Flight 296. The plane had clipped a tree in a forest but managed to land. Fire broke out and the passengers evacuated. Of 136 people on board, only three did not escape. One was a disabled teenage boy who couldn’t walk. No one came for him and he died in his seat. The second was a young girl in another row who was unable to remove her seatbelt. The third was a woman who had reached the exit and then turned back to help the girl.

I grew up feeling like my disability was something to be ashamed of. In Malaysia, where I was born, my parents believed I had been cursed, an ancestral curse that was delivered because my grandmother had breached her filial duties. When I was eight years old, we migrated to Australia. My parents found Jesus and became part of a revival group that saw my disability as a manifestation of the Devil.

Although mainstream Australia never called disability a curse or a sign of the Devil, it was still seen as a burden deserving of charity or welfare. Up until my late twenties, I would never challenge discriminatory attitudes or all the systems and structures that were inaccessible to me. The problem, I felt, was with me. I worked hard to fit in by downplaying or minimising my disability whenever I could. Hence the nightclub experiences.

In my final year of uni, another nightclub incident changed things for me. It was the night of the law students’ ball. At the end of the event, we spilled out of the town hall and on to a nightclub. A line was forming outside. A student I knew casually, Mandy, came over to let me know there were three steps at the entry, and a group of them would help lift me in.

But when we got to the entry, the doorman wouldn’t let me in. “It’s too crowded,” he said.

“Then why can the rest of us come in?” Mandy said. He told us to move out of the line. Next thing, they were shouting into each other’s faces and the doorman pushed Mandy backwards. More people in the line were joining in the fracas. A friend appeared from behind, lifted me off my chair and just walked through the entry carrying me. I tried my best to look like I was having fun that night for the sake of everyone who had fought to get me in, but I was mortified for causing trouble.

When I saw Mandy again at uni, she asked if I was interested in making a disability discrimination complaint against the nightclub. I said she should go ahead with the complaint about the doorman pushing her, and I would make the disability discrimination complaint myself. In truth, however, I wanted it to disappear. I didn’t make a complaint.

But it was this incident – my fellow students speaking up for me, and being confronted with my own denial of what was happening and failure to call out discrimination – that set me on a path to change. It would take a long time. Even after years working as a human rights lawyer, I had to get through layers of doubts and fears about my place in society before I could speak out.

I have recounted this to try to explain what I was going through during the first wave of the virus. I feared that human rights were a veneer in times of calm and plenty, and we were one thin reveal away from our animal state. The thing that helped me surface from this sink was hearing other people with disabilities speak out. We shall not be treated as collateral damage or expendable in a pandemic. Now, more than ever, they said, it is time to challenge inequality.

I started to question the so-called dilemmas that were being circulated. Should we save the older and weaker, or the younger and fitter? Do we protect the economy or protect health? These are false dilemmas that ignore the fact that alternatives exist. They serve a hierarchy that incites us to fight it out while the more privileged isolate and protect themselves.

Those who see the old and weak as collateral damage for the survival of society in a pandemic try to make it sound like they are the realists, as though there is a natural order that needs to be respected. How convenient for those at the top to ignore the role that deep structural inequalities have played in creating vulnerability. What is “natural” about the neglect in aged-care homes, the inadequate conditions of our high-rise public housing, and the prejudice that allows us to treat others as of lesser value?

Despite the failings in aged care and quarantine, the way the second wave was handled where I live, in Victoria, has given me some hope. The majority of people were willing to stand together and accept the restrictions needed to overcome the second wave, and the premier was able to withstand the pressure to open up the economy sooner. I hope it was a sense of connection with others, including those outside our own cultural or socioeconomic experience, that contributed to the ability to unite against the virus. And I hope that there will be more impetus for governments to act on the inequities that were highlighted through the pandemic.

I did some research about the flight emergency evacuation policy and found another false dilemma. It is not a matter of saving my life or the rest of the passengers’ lives. We can design systems from the start to make sure we all have a fair chance of survival. The airline could test a plan that would seat me near the exit, make sure the armrest on the seat raises so I can be carried more easily, have a purpose-made sling for carrying passengers like me, and train its crew to assist. No one has to be left behind.

When we can fly again, I am going to speak up, even if they throw me off the plane.

Micheline Lee

Micheline Lee is a lawyer and artist. Her novel, The Healing Party, was shortlisted for the 2017 Victorian Premier’s Literary Awards.

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