The hidden cost of living with COVID-19

Yet this freedom has come at a cost for the millions of disabled people forced into their own personal lockdowns.

Last Sunday, a vigil was held in Canberra to mourn the thousands of COVID-19 deaths in Australia and to protest the government's inaction to slow the spread of the virus or protect people at risk of severe illness and death.

Organised by disability advocates and grassroots group Australians Against COVID, 40 people gathered on the lawns of Parliament House to draw attention to the elephant in the room that the government, the media, and the public have committed to ignore.

With Parliament House looming in the background, 4000 black inverted triangles adorning a continuous stretch of tapestry placed on the grass of Federation Mall gave visual form to an immense loss.

Each triangle represents four Australians who died of COVID-19, most in 2022, in a "reaping" that organiser and speaker Craig Wallace labelled "the biggest act of eugenics and democide ever seen in this country".

Notably, this was the first in-person event to protest the "let it rip" response that now has bipartisan endorsement, at a state and federal level. Masks and social distancing were compulsory to ensure the safety of attendees, while the proceedings were livestreamed for those unable to attend in person.

In a simultaneous online action, hundreds of disabled and at-risk people across Australia took to Twitter to post photos of their front doors, tagging Prime Minister Anthony Albanese and using the hashtag #VigilAgainstCOVID, to highlight the suffering of being unable to leave their homes.

Yet there have been crickets from the mainstream media, with no coverage of the event. This is sadly unsurprising considering the dominant rhetoric to "move on" endorsed by so many politicians and journalists alike.

It's been a year since the Omicron variant first landed in Australia and our governments decided we need to "live with COVID".

It turned out that this actually meant ignoring COVID, with wave upon wave of subvariants subsequently breaking on our shores. Instead of measures to reduce transmission, like mask mandates, financial support and test, trace, isolate and quarantine, our governments instead urged "personal responsibility" in avoiding a virus that demands a collective response.

As we've seen, this laissez-faire approach to public health has shifted responsibility (and blame) from the government to the individual.

As speaker and president of People With Disability Australia Nicole Lee stated at the vigil, many disabled people feel they've been thrown under the bus so that others can "return to normal".

This return has meant normalising widespread infection, disability, and death. Most Australians have now been infected, including up to 90 per cent of our children (99 per cent for those aged 12-15).

We are told that COVID is "mild" for people without "underlying conditions", but studies estimate that anywhere from 2 to 40 per cent of those infected develop "long-COVID", which can include a myriad of disabling effects.

One year after post-infection, COVID survivors (even those who were asymptomatic) are 52 per cent more likely to suffer a stroke, 63 per cent more likely to have a heart attack, and 72 per cent more likely to develop heart failure.

Though we've been told it's less serious for children, studies have found that one infection increases their risk of type 1 diabetes, blood clots, heart problems and kidney failure.

With each wave, there are now fewer and fewer Australians who can say they have no underlying conditions.

Instead of rioting on the streets for access to safe workplaces, schools and public buildings, however, many are instead happily going along with this. While disabled people are forced to bunker down for months on end, the rest of society are living it up.

The situation has only worsened under Prime Minister Albanese's watch. The rolling back of all COVID protections has created an unsafe and inaccessible society.

As Vaughn Bennison, executive officer of DVT, noted in response to the removal of mandatory isolation requirements, this decision "severely inhibits the freedom of people with disability ... and infringes our basic rights as established in the United Nations Convention on the Human Rights of Persons with Disability, - a convention to which Australia is a signatory".

Many disabled people, who are at higher risk of severe illness and death from COVID, have been forced to self-isolate within their homes for the past year.

We've had to watch from afar as others return to their lives while we cannot even safely access education, healthcare, groceries or public transport. The isolation and exclusion that many face is suffocating, with no end in sight.

At best, it feels like we have been forgotten by society and left behind in the push for normality. At worst, an emboldening of social Darwinist ideology, sacrificing the "weak" for "the good of the herd".

The inverted black triangle chosen for the vigil is a powerful symbol within disability activist circles as the badge used in Nazi Germany to brand disabled people deemed "unworthy" of life.

As the speakers at the vigil made clear, Nazi-era eugenics is not a relic of the past, as many believe, but is alive and well in our governments' present response to the pandemic.

The needs of disabled people have been an afterthought in current COVID policy, even though disabled people are more likely to die, especially those with intellectual and/or developmental disabilities.

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And our deaths have been justified through the term "underlying condition(s)", encouraging an "it won't happen to me" mentality among those who believe this doesn't apply to them. But what message does this send to those who do?

Since the rise of the eugenics movement in the 19th century, disabled people have been segregated for the "betterment of society". Once condemned to institutionalisation, we have since made strides in creating a more accessible and inclusive world.

Letting it rip, as Wallace reminds us, is an attempt to force disabled people back into the attics, the basements, the home and isolation; trapped behind their front doors for years on end without reprieve.

The vigil organisers and attendees made it clear that disabled people will not be quietly locked out of society or die in silence, calling for immediate government action.

First, a public commitment from all governments to "end the current uncontrolled transmission of COVID".

Second, the implementing of sensible measures, including vaccinations, mask mandates, air quality safety standards, sufficient and accessible testing, isolation and, most importantly, a swift response to new outbreaks and changing circumstances.

Lastly, guaranteed rights to work and study from home, COVID-safe essential spaces, accessible COVID testing and PPE, and support for those with long-COVID.

The only way out of this pandemic is to make society safer for all.