The pandemic has been a brutal reminder that disabled people don’t matter. Living through this, as a disabled person with a wonky immune system, has been a reminder that my life doesn’t matter to most.
Where I do matter is in my disability community, the community of folks at such risk of this deadly disease who have rallied and worked together to protect ourselves. After two years of the pandemic, of the lockdowns, of the forgetting and the ignoring and the gut-wrenching fear, my nerves are sanded raw, jangling now at the slightest breeze of change. A new variant is announced, restrictions for me creep back in, and I’m left to wonder if this is how it will be from now on. No more music, no more crowds, no more indoor anything really, and no more footy. For the rest of my life.
The past two years, and the many before them, showed me that I can do this. I can build a life in four walls, I can survive terrible things. But I also know that it isn’t easy, this isolation, this removal from the world. I knew that before the pandemic, and I know it even more now. These past two years have also been a show of strength, grit, perseverance and survival of the disability community I’m proud to be part of. Disabled people have built networks of care that will endure beyond this pandemic.
• • •
In February 2020, my GP is kind, but worried. She is blunt with me, knowing that this is best. You have to go into lockdown now, she tells me. This virus is very serious for you, with all your … and she waves her hands to indicate my entire body. You can’t get this, El, you’ve fought too hard over the past few years, but you have to take all the precautions, all of them. You would die, she says.
There’s more talking, about hearts and lungs and cytokines and inflammation and immunosuppressants, but I’m not really listening anymore. Everything I’ve been reading about COVID told me this was likely to be the case, but I’d been trying to convince myself that I was just being anxious. Hearing my lovely GP be this frank about the risks I face isn’t easy. I walk home slowly, my stick pushing down on Katoomba Street as I navigate around people suddenly rendered toxic. I try not to breathe near them as I check what food I need, then do a last grocery shop and pick up medication. I close the door to my flat, leaning my head against the inside as it shuts, knowing that I won’t go out again for what turned out to be five months, that first lockdown.
A few years ago I nearly died. My heart failed, after getting bigger and bigger working so hard to keep me alive. Before that, I wasn’t in a great place. I’d been very sick, my immune system determined to kill me once more, back on income support, nearly lost my home, and had wondered if it was all worth it more than once. But when those doctors stood at the end of my hospital bed, as I struggled to catch a breath, and told me that I was about to die, it turned out I really didn’t want to.
I did everything they told me to for the next year—restricting fluids, taking all the drugs, going to cardiac rehab—and it worked. I would place my hand over my heart, whispering to it and willing it to keep beating, one thump at a time. It was a difficult year, but at the end of it my poor heart had contracted to almost a normal size and I was no longer in heart failure. I wasn’t going to die, at least not then.
All through the pandemic, that rush I felt in the hospital has been back, that adrenaline-fuelled panic about dying. I put my hand over my heart, feeling it race, and whisper quietly. Each time cases rise, I go through the routine again, locking down weeks before everyone else, checking I have supplies, bracing myself for another long, lonely time. Again, I’ve tried to do everything I can to stay alive, but this time I can only control the small part that is mine. Now I have to rely on everyone else also not wanting me to die. And I’m not entirely confident.
I have been sick for a long time, decades now. My immune system is on high alert for imaginary enemies and attacks my body in the meantime. This illness is an old, old one. Fragments of the DNA markers have been found in Neanderthal remains. This wonky immune system has survived because it protected my ancestors from plague, from disease. These ancient etchings on my cells are why I’m here at all.
My body feels stretched now, worn down from years and years of trying to contain this illness, from the side effects of the drugs, the precautions I must take. The immunosuppressants mean I was careful even before COVID, because acquiring another illness in addition to the ones I already have, would be a bad idea.
When the pandemic hit, much of what was about to happen was already happening to me. Already I didn’t leave the flat much, worked from home and spent too much time on Twitter. The pandemic meant that so much suddenly became available to me, all while my fragile support arrangements collapsed. At work I was in meetings where everyone was on video, not just me stuck on someone’s phone in the corner, hearing every third word. I could go to arts events, join conversations and give evidence at a royal commission. At home I was dying of loneliness, not seeing a single person for months, disability supports not available, gym and physio out of reach, my arthritis weaving its tendrils of pain around more and more bones.
I lived in two worlds during COVID. One that suddenly got more open and inclusive, where I was asked to talk at events, on television, to Senate committees. I pasted lipstick on, and calmed my frizzy hair, adjusting a badly fitting shirt, so I could tell the world that disabled people needed help. Then I would scrub it all off, limp to the kitchen and face the anxiety swarm about there being no food.
Non-disabled people talked about how hard being in lockdown was, how much they missed seeing people, how difficult they were finding being on screen all day. This was my life they were talking about, my exact life. I wavered between anger at their thoughtlessness and ignorance of disabled people’s lives, but also a sinking realisation that yes, my life is hard.
Mediating myself on screen, when everyone else was on screen, made me seem as though I wasn’t disabled. No-one saw my disfigured skin, no-one saw my wonky hands, or me limping up the street, so slowly, leaning on my stick. Here, in screen land, I looked just like everyone else. This virtual erasure of my disability and the realities of my impairments made dealing with what was happening incredibly difficult. When my supports stopped, I didn’t say much. When I couldn’t get food, I ate weird combinations from the cupboards. When I didn’t see anyone for months at a time, I didn’t say how lonely I was.
The social model of disability says that this is what was meant to happen. If I am disabled by my environment, then making that environment more accessible will make me less disabled. But that also hid what was happening to me and other disabled and sick people during the pandemic.
I have spent much of the past two years being very angry, in a rage at how invisible we are, how invisible I am, how easily we are ignored, forgotten, excluded. Early in the pandemic, reports from outside Australia started to come in of health systems overwhelmed, and treatment being rationed to those who matter. Triaged out of care, disabled people around the world spoke out, terrified that this pandemic would reveal the not-so-hidden eugenic tendencies that we all know so well. Alice Wong said, ‘Were I to contract coronavirus, I imagine a doctor might read my chart, look at me, and think I’m a waste of their efforts and precious resources that never should have been in shortage to begin with.’1
In Britain, 60 per cent of those who died from COVID were disabled people.2 Here in Australia that data isn’t collected—we aren’t counted. The numbers we do have are gleaned from snippets out of the NDIS, and the dreaded ‘underlying health conditions’ that hint at a greater toll in our community. Who is valued, whose life is seen as worth saving, who will get the ventilator, who will lie in the ICU bed, who will be left to die? These questions plagued me, and many others. I knew if this triage happened here, I wouldn’t be prioritised, nor would many of those I love.
At the beginning of the pandemic, I, along with other disabled people, started to get worried calls and messages: I can’t get food; my disability supports just stopped; I’ve got no money for essential medication; all the sanitation gear I need has disappeared; I don’t know what the rules are; what on earth is Telehealth? The lack of preparedness by all levels of government meant that the needs of disabled people were ignored. Some 15–20 per cent of the population, just forgotten.
Disability advocacy organisations, many run by disabled people and with disabled staff, scrambled to answer the calls for help, all while dealing with the very issues they were getting calls about. The distress escalated quickly, as the stonewalling and refusal to answer continued. Advocates raised all of this with governments, over and over. They used every avenue to try to get them to listen to what was going on. More stonewalling. Make a complaint to this agency, they said. We’ve not heard anything, they said. This isn’t really a big deal, they said.
All of our polite advocacy and quaint faith that governments would of course include us in the pandemic preparations disappeared very quickly. It was incredibly distressing to know how little they cared, and how quickly and easily we were disposed of. All while our community was in such peril.
While governments did very little, our community got organised. A group of disabled and sick people came together to create a Facebook information clearinghouse, where people posted updates, shared information and helped each other. People posted translations of public health orders, links to sources of help in different states and territories, and worked together to determine how to get food and supports. We posted the latest about income support changes, but also worked together to advocate for change, collecting stories about our experiences, and sharing them with those who were ignoring us.
This community worked to reassure each other, to share the very specific disability information we needed and that wasn’t available anywhere else. Disabled and sick people shared their crip survival skills, hard won in pre-pandemic times, so we could all make it through together. The Disability Justice Network of Australia has been raising money through the pandemic to distribute to multiply marginalised disabled people, and has given out over $40,000 so far, mostly raised from other disabled people.3
All this work is what Leah Lakshmi Piepzna-Samarasinha has been writing about when they talk about disabled mutual aid.4 Piepzna-Samarasinha calls these networks that we build ‘webs of care’ and says that ‘the ways we kept each other alive during COVID is nothing short of a heroic, epic battle, something there should be an epic movie about but probably won’t be’.
Eventually there was some acknowledgment that we existed, and small amounts of support trickled out. The Disability Royal Commission held an inquiry into the COVID response in 2020 and found that ‘the failure to consult during the critical early period contributed to the Australian Government neglecting to develop policies specifically addressing the needs of people with disability and the challenges confronting them in an emergency unprecedented in modern times’.5
By early 2021, it was clear that nothing had changed. Disabled people, particularly those who live in group homes and aged care, were to get the COVID vaccine first, which was some acknowledgement of the risks they faced. The second group of disabled people were those like me for whom, if we got COVID, it would be a disaster. Soon it was clear that the same failures, the same neglect, was happening all over again. Disabled people, after living in such fear for a year, were trying desperately to get vaccinated, but couldn’t. Everything’s fine, said governments. Everything bloody well is not, said disabled people.
There was another Disability Royal Commission inquiry, and another report, finding pretty much the same as the last one.6 Decisions had been made to ‘deprioritise’ disabled people and no-one was told. Disabled people living in group homes, meant to be first in the queue, were becoming some of the last to be vaccinated.
Disabled people started petitions and social media campaigns. We talked to the media, to anyone who would listen, all while trying to get vaccinated ourselves. By later in 2021, the vaccination of disabled people finally got moving, as more COVID variants arrived. Yet again, disabled people, the very community at great risk from this pandemic, and experiencing incredible hardship over the past two years, are the ones also having to organise and fight for any support to survive it.
There is a long and ugly history of Australia shutting away our disabled citizens, of putting us in institutions from childhood and periodically being horrified by what was happening there. Eugenics found a ready home here. Australia’s federation is built on what they saw as the ideal citizen—white, able, male—erasing the rightful owners of all these lands.
Exclusion was baked into the foundations of the colony, and then of the federation. Disabled people were only to get the newly minted invalid pension if they were of good character, and people who were ‘Aliens, Asiatics or Aboriginal natives of Australia, Africa, the Islands of the Pacific, or New Zealand’ were excluded. As well as being deeply racist, Australia’s Immigration Restriction Act of 1901 had ‘other clauses and other sections … which are absolutely eugenicist in a different way, and they are to do with excluding people, not on the basis of race, but excluding people on the basis of their mental health. Also their physical health’.7
The writer Amanda Tink says, ‘It’s sometimes thought that eugenic thinking ended with World War II, but it did not die. Like the coronavirus, it mutated.’8 People from all parts of the political spectrum argued, out loud, for measures that put disabled people at high risk of dying, then shouted at us when we objected.
We know in our deepest hearts that you all wish we were far away, out of sight, taking our wonky bodies and minds over to that disabled place over there. Seeing all that laid so bare during the pandemic was yet another reminder that disabled people are far from belonging, far from equal, far from included.
Damian Griffis, CEO of First Peoples Disability Network, knows this, and has worked with Professor Cameron Stewart and Professor Jackie Leach Scully to develop a document called ‘Ethical decision-making for First Peoples living with disability’.9 Griffis says that ‘our fear in Australia is that First Peoples with disability who are already experiencing higher levels of disadvantage and are extremely vulnerable to COVID-19 will be triaged out of the health system or be provided with inadequate support’.
He was right to be fearful, with the vaccine rollout failing First Peoples with disability. Griffis said that ‘we’re still not seeing enough direct engagement with First Nations people with disability. They need to be able to access the vaccine in the homes in the places in which they live. It’s not accessible for many First Nations people with disability to be expected to go to a centre-based vaccine.’10 This fear of disability, and of disabled people, crosses the political spectrum, with progressives and conservatives shying away from us and our lives. If disabled and sick people are the ones at risk and dying from COVID, then the pandemic is happening somewhere else, to someone else.
I’ve been wondering if I will ever go to the footy again. I’ve been going to AFL games since I was a kid, sneaking through the fence at Princes Park, singing ‘We are the Navy Blues’ with gusto, feet dangling from the seat, watching my grandmother yell at her beloved Hawthorn. I’ve been out to Blacktown on a far-too-hot-for-footy day to see the AFLW, so emotional seeing women playing footy, and have talked ridiculous nonsense about the AFL for a podcast.
The idea that I couldn’t ever go to a game again is too much. But it’s something I have to think about now. I got my third shot in November, but the people getting COVID, while vaccinated, needing treatment in ICU and dying, are people like me. I am one of those with ‘underlying health conditions’. The ice-cold fear runs down my back again, and I breathe in slowly, breathing out in an effort not to dissolve.
My friends make complicated plans to come and see me. They know how much I miss them, how hard this time has been. If I don’t see anyone for a week, then get a rapid test before I get in the car, that should be safe, they suggest. I guess so, I respond, but I’ll take the chance because if I’m on my own for another moment, I don’t think I’ll come back. Is this what it’s going to be like now? Am I to have these carefully arranged and rationed amounts of socialising, but no more groups, no more strangers? I have no idea, and no-one can tell me if this is true, or just my weird brain after two years in isolation.
I watch all those people chanting about their freedom, and think about how much I’ve lost during COVID, and how I may never get any of it back. That this life I have, here at home, might be it from now on. Should I paint the walls, cover them with images of the world that I won’t see again? I scroll through social media, skipping over pictures of people out and about. I can’t bear it.
Flavia Dzodan writes with clarity about freedom protesters. She asks, ‘In a country that built its national identity on the “freedom to occupy spaces” as a result of obliterating the populations of such spaces, what does it mean to protest measures of care for the lives of others?’11 Dzodan is talking about the Netherlands, and the protests there against pandemic public health measures, but the similarity to this continent is clear. Settlers, invaders and colonists built a federation based on exclusion, and those who live in this colony must reckon with those fundamentals.
Piepzna-Samarasinha’s essay about disabled mutual aid ends with a reflection that this work, this essential care work by disabled folks, is how we will survive:
There’s been so many times in my life where my goal has been we need to save THE WORLD, anything less is nothing, inadequate.
But we, in our small crip cyphers, are the world. And the small, low-key things we do, in the crip genius ways we do them, with ease, without abled panic, are the opposite of nothing. They are everything.12
These small, low-key things that disabled people do to build and nurture our community are how we survive this pandemic, and how we will survive the crises to come. •
El Gibbs is an award-winning writer and disability advocate. El’s work has featured in Growing up Disabled in Australia, Overland, Eureka Street and Croakey.
Notes
- See <https://www.vox.com/first-person/2020/4/4/21204261/coronavirus-covid-19-disabled-peopledisabilities-triage>.
- See <https://www.bbc.com/news/uk-56033813>.
- See <https://www.gofundme.com/f/disability-justice-network-mutual-aid-fund>.
- See <https://disabilityvisibilityproject.com/2021/10/03/how-disabled-mutual-aid-is-different-than-abled-mutual-aid/>.
- See <https://disability.royalcommission.gov.au/publications/report-public-hearing-5-experiencespeople-disability-during-ongoing-covid-19-pandemic>.
- See <https://disability.royalcommission.gov.au/publications/report-public-hearing-12-experiencespeople-disability-context-australian-governments-approach-covid-19-vaccine-rollout-commissionersdraft-report>.
- See <https://www.abc.net.au/radionational/programs/rearvision/australias-eugenic-heritage/3244372>.
- See <https://overland.org.au/2020/05/the-glamour-of-being-high-risk/>.
- See <https://fpdn.org.au/covid-19-ethical-decision-making-for-first-peoples-living-with-disability/>.
- See <https://www.abc.net.au/radio/programs/worldtoday/first-nations-disability-advocates-warnvaccine- inequity/13660872>.
- See <https://theresearchpapers.org/no-future-full-throttle-death-drive-and-coronacapitalism-in-thenetherlands/>.
- See <https://disabilityvisibilityproject.com/2021/10/03/how-disabled-mutual-aid-is-different-than-abled- mutual-aid/>.
