The impacts of COVID-19 have been felt around the world. The pandemic’s emergence and our global societal response constitute a pivotal moment in human history. And, like other significant historical events, COVID will have long-term and far-reaching consequences felt well beyond our own lives and time.
The ongoing direct and indirect impacts that the virus continues to wreak cannot be overstated. In terms of my own situation, as a disabled person with chronic health conditions, I can vouch that COVID has radically altered both my life and my perspective.
I dwell upon land originally inhabited and owned by the tribes of the Mamu people south of Gimuy (Cairns) in North Queensland, Australia. I am an Autistic, queer person with ADHD – and let me tell you, attempting to titrate ADHD medication during a global pandemic has been freaking hard! Additionally, I live with various chronic health conditions, including C-PTSD, anxiety, depression, genetic abnormalities, and autonomic dysfunction, as well as being a recently discovered Alpha 1 Antitrypsin Deficiency carrier.
The process of seeking and obtaining these diagnoses has been long, complex, and arduous. I’m currently still pursuing diagnoses for ME/CFS, Ehlers-Danlos syndrome, and fibromyalgia. These various conditions, particularly the immune-based conditions, put me at higher risk of contracting COVID, due to my compromised immunity. In addition, I’m at higher risk of developing complications following a primary COVID infection. Since learning of my new immune-based conditions, my life both looks and feels very different than it did previously.
Currently, North Queensland is experiencing its biggest COVID outbreak of the pandemic. Since Queensland’s borders opened to interstate travel on December 13, 2021, case numbers have skyrocketed – a sobering reality for disabled and chronically ill people like me.
Previously, in March 2020, I fled COVID outbreaks in Gimuy (Cairns) to return to my family, not knowing what the future would bring. Since then, my personal journey of survival and resilience through the pandemic has been long and difficult. In 2021, a cancer scare marked one of the lowest points of my health situation. Since then, my life has been marked by numerous fruitless visits to specialists regarding complex health matters, some of which have since led to the discovery of other health conditions. The process has left me exhausted and jaded by my attempts to navigate systems hostile to both disabled bodies and atypical brains. Our medical system, and society at large, does not know what to do with brains and bodies that cannot be ‘fixed’ to the desirable norms of a particular socio-political agenda.
When speaking to the impacts COVID has had on my life, I first need to clarify my position. Although I am queer, disabled and experience chronic health conditions, I also have privileges, such as being white, being reasonably well-educated, having secure housing and regular access to a supportive GP, and having the ability to study online. I know that my experiences of seeking healthcare during COVID would be vastly different If I were Aboriginal, or from a culturally and linguistically diverse (CALD) background.
Through the pandemic – and even before, truthfully – I have found healthcare and disability support organisations to be largely populated by ableist (and often highly paternalistic) individuals who lack the knowledge and appropriate training to work with disabled people, especially people with complex needs. Nowhere were these barriers more evident to me than when attempting to access the NDIS. I have found trying to access the NDIS and get the support I need to be expensive, humiliating, and ultimately fruitless.
Sadly, both ableism and a damaging, paternalistic outlook are prevalent not only throughout the healthcare community, but also in the tertiary sector. Unfortunately, and unsurprisingly, this has negatively impacted my ability to complete my studies and attain my degree.
So, at best, I have a decidedly uneasy relationship with medical and support services. On one hand, as a disabled and chronically ill person, I need them – and I therefore support the adequate funding and resourcing thereof. But on the other hand, I know that these same services which are meant to help me have often been the source of trauma, frustration, and righteous anger. Not being able to rely upon the public healthcare system during the pandemic has been profoundly challenging. Apart from my mother, I have no support – no partner, family, or local friends to assist if either of us do get COVID. Without support from public healthcare, I am on my own, reliant on my own resources (or lack thereof), as I have been for much of my life.
In 2022, we are now facing Omicron, a new, poorly understood variant unleashed (by virtue of prematurely opened borders and lifted restrictions) upon an entirely unprepared community. Society and government both desperately want the COVID crisis to be over, and frantically cling to the latest variant as evidence that COVID’s natural development will ‘end the pandemic’ by causing the virus to become ‘endemic’. It seems that few realise what endemic implies. Endemic merely means that a virus has become commonly found in a community. Nothing more than that. Endemic does not equate to the crisis being over.
The loudly espoused hope that COVID becoming endemic will save us seems to be based on wishful political thinking, not anything remotely resembling scientific evidence. With the virus freely circulating in the community and protective measures easing, little protection remains for disabled and chronically ill people like myself. Amidst socio-political apathy and inaction, COVID – and the numerous issues that the pandemic has either caused or revealed – have struck our most vulnerable communities the hardest. It has become increasingly evident that society doesn’t care about marginalised communities if the majority of people aren’t inconvenienced. Bread and circuses, indeed! The abject erosion of the social contract and lack of accountability to one another has never been clearer – just like the obvious (and sometimes willful) ignorance combined with apathy which has allowed it to develop.
Living with the virus? Clearly, this pronouncement means different things for different people. For the privileged, this means high quality Personal Protective Equipment (PPE), access to a GP, funds to acquire rapid antigen tests (RATs) (legal or otherwise), leave and other workplace entitlements for isolation, stable accommodation, nutritious food, support networks for emotional/practical matters and assistance if hospitalised. Having access to wealth and adequate savings means that the privileged cannot only weather financial hardship during the pandemic, but also deal more easily with potential complications following primary infection and recovery.
Living with COVID looks very different if you are marginalised. If you’re an Aboriginal or Torres Strait Islander person, disabled, poor, homeless, a person of colour, a queer person, a single parent, or have an underlying health condition, then living with COVID is not easy. Indeed, for people on low or supplementary incomes, this means insecure (or no) employment, unsafe working conditions, and shared/overcrowded or unsafe housing. No support if you fall ill, no money to buy necessities. Further, if you live in regional, rural, or remote areas of Australia, access to healthcare is even more problematic, with a few GPs scattered through large areas. This places incredible burdens on very few healthcare practitioners, adding to existing systemic pressures on remote and regional services providers. Furthermore, for many people, there may be additional issues. For example, accessing healthcare may not be safe due to cultural factors and past experiences of trauma preventing people from accessing what little services do exist.
Our governments have been pushing the mantra that ‘we’re all going to get COVID’. This statement fills me with fear – not only for me, but also for my family. According to our governments, with the reduced number of COVID-related hospitalisations, it’s now safe for our already diluted health measures to be lifted. This chills me to the bone. It seems I am now forced to live in self-imposed lockdown for an indefinite period. For me, with my health conditions, I will never have the privilege of living in a ‘post-COVID’ world, I will always have to take measures against becoming infected. There will never be a ‘return to normality’. Indeed, no one seems to care if I, my family, or my peers live or die. The privileged enjoy a ‘return to normal’, while the daily death tolls from COVID are simply dismissed as inevitable because the dead ‘had underlying health conditions’.
Of course, eugenics and ableist attitudes are not new. From antiquity onwards, the deaths of disabled and chronically ill people have rarely been mourned. Indeed, in previous eras and across many societies, it was common practice to expose disabled people at birth to the elements, knowing their death due to hypothermia, hunger, thirst, or animal attack would be likely. Today, this practice appears to still be in effect, though it is more subtly applied in the modern context. More easily digested for the modern palate. After all, why allow disabled or chronically ill people to live? We’re told, either directly or through other deceptive means, that we are non-contributing members of society, and thus a burden to the economy. As a contemporary disabled person, I admit that that statement frightens me profoundly. It also infuriates me, and my rage is helping to fuel my resolve to remain healthy and campaign for myself and others.
I refuse to die, or to let my health be compromised for anyone’s bottom line. If I or my family get COVID, we’ll likely be severely impacted, requiring hospitalisation – which entails admission to an overloaded health system, operated by people who are struggling with staff shortages, long hours, and little support. Health workers are incredibly fatigued, exhausted, and burnt out. Our public medical infrastructure, which has been eroded year after year by successive governments, is barely able to maintain services. As I mentioned before, due to past trauma, I have an uneasy relationship with the medical system. In this debacle, not only do I fear for my physical self, but I also hold grave concerns for my mental health, and I fear that accessing services will inevitably result in my being re-traumatised. Because of the crisis, my complex medical needs will likely not be taken into consideration either. Of course, this is not an indictment of staff, but rather an example of the abject failure of systems which are, ultimately, a government responsibility.
As a society and individuals, we must ask ourselves: ‘how many people are we comfortable with killing or disabling?’ With COVID, it is not just a matter of primary infection. Indeed, a proportion of people who contract the virus will develop ‘long COVID’. This condition, though variable, appears quite like ME/CFS, a well-known condition with debilitating symptoms that can cause many impacts in terms of economic, educational, and social participation. What will the effects of large-scale long COVID be, not just for medical and allied health services, but for our broader society moving forward?
This is not only an economic question, but a question of ethics. A short while ago, vested interests lobbied hard for open borders. Now, governments and businesses are scrambling to shore up collapsing markets amidst widespread absenteeism, extensive supply chain issues, and business closures. Our economy cannot function without people. Sick people do not work, and so businesses suffer, services cannot be provided, and the economy ultimately fails.
We’ve all been through a collective and ongoing trauma, and this is the beginning of our third year of it. It’s understandable that collectively, we’re burnt out and desperately want to get back to ‘normality’…whatever that is. I would suggest that people reflect on what ‘normality’ was, and why they are so eager to return to it. Those so-called ‘good old days’ were never particularly beneficial for me and my disabled peers. In fact, COVID has precipitated the large-scale implementation of telehealth and work-from-home arrangements, for which the disability community has been advocating for many years. It is only now, with social distancing installed as the new normal for the privileged majority, that these reasonable accommodations – deemed ‘too difficult’ or ‘of too little benefit’ for so long – have finally become available to us.
There have been two years in which to prepare for this: precious time bought with restrictions, lockdowns, and public health protocols. While Omicron is a new variant, and presents and behaves differently than past variants, all COVID varieties to date have exposed the weaknesses inherent in our social support and public health infrastructure. Institutions which rely on fragile supply chains and using and abusing people who often work in inhumane and unsafe conditions, and who are paid poorly. We stayed home, lost businesses, endured long separations from our partners and families. Some never got to mourn at bedsides or funerals. The residents of Victoria and New South Wales, especially, endured many lockdowns. For two years, we all did this; made sacrifices for what we were told was the greater good. We cost-shared to buy time, so that as a community, we could prepare for when borders reopened. We assumed that the various levels of government would have implemented tiered strategies to minimise disruptions and safeguard public health.
How naively wrong we were! How costly has that unfounded belief been! Of course, the expense of our misplaced trust will be borne not by governments or the privileged elites, but rather by society’s most vulnerable people.
Australia is a patchwork nation, bound together by threads of colonialism, xenophobia, convenience, and economic and strategic necessity. We are a hodgepodge country among the many which span the globe. This international health crisis has fundamentally shaken our states to the core – but it has also shattered some existing norms and expectations, opening the potential for change. So, where to from here? Few dare hazard a guess, but nature (like power) abhors a vacuum. The evolution of this crisis, and of our responses, have clearly illuminated the weaknesses inherent in the elaborate structures that we are enmeshed in.
Furthermore, the stark health disparities experienced by the Global South will continue to drive the pandemic by creating grounds for future COVID variants and outbreaks. Therefore, unless we address the health and other disparities which have been laid bare by COVID, we will continue to live in a pandemic. Unless we learn from history and apply the lessons which have managed previous infectious diseases, it is likely that COVID will continue to impact our communities and economies for the foreseeable future.
“My thanks to the previous generations of disabled and chronically ill people, particularly those from multiply-marginalised backgrounds. Many of these people were unknown to history and died before ever experiencing the fruits which grew from the seeds of dignity and greater freedom which they sowed. I honour their memories, and their hope, vision and anger continue to fuel me and my activism. Rest in Power.” – Dee
Dee Harvester (pen name) (pronouns: She/They) is a queer, non-binary person of Irish and Scottish ancestry who lives on the lands of the Mamu people. Dee is pro-science, fully vaccinated and supportive of mandatory vaccination. She is a published freelance writer, studies Social Work, and has an interest in intersectional social justice, organic gardening, permaculture, and the arts. They are proudly Autistic and ADHD (nothing about us without us) and live with several co-morbid chronic health conditions.
Would you like to contribute?
Want to learn more about LEAD?
If you would like to learn more about WWDA’s new project, LEAD, find out more on the LEAD page.
The blog posts do not necessarily represent the views and opinions of Women with Disabilities Australia (WWDA), and blog posts are contributions made by women, girls or non-binary persons with disability about what leadership means to them. All possible care has been taken in the preparation of the information contained in this document. WWDA disclaims any liability for the accuracy and sufficiency of the information and under no circumstances shall be liable in negligence or otherwise in or arising out of the preparation or supply of any of the information aforesaid.