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Read an Extract from The Conversation’s Latest Book of Essays: Long COVID should make us rethink disability and the way we offer support to those with ‘invisible illness’

Marie-Claire Seeley
University of Adelaide

This is an extract from 2022: Reckoning with Power and Privilege, a collection of essays brought from The Conversation.

Australia has only a handful of specialists familiar with managing what happens when the nervous system can’t properly regulate the body, as sometimes occurs with long COVID. While long-COVID clinics are being set up, there are no government-funded clinics for this type of nervous system dysfunction, and private waiting lists are now long.

From the outset, long-COVID sufferers faced the same prejudice experienced by patients before them who sought assistance through Centrelink and the National Disability Insurance Scheme for the effects of post-infection conditions. Disability insurance schemes worldwide are driven by definitions and checklists that allow non-medical workforce to assess and approve candidates for support services, but those with ‘invisible illness’ rarely meet these criteria.

If we are to manage the tidal wave of impairment and disability bearing down on us, policymakers must heed the warnings that have been sounding for the past two years. We’ll need to rethink disability and support.

First warnings

In November 2020, data later published in The Lancet were presented to the Chinese Academy of Medical Sciences. The researchers warned of persistent symptoms after COVID, including fatigue, cognitive dysfunction, palpitations, chest pain, depression, insomnia and headache. The colloquial term ‘long COVID’ was soon coined. Varying iterations of the name followed (including ‘COVID long haulers’ in the United States). Many clinicians use the more scientific descriptor ‘post-acute sequelae of COVID-19’.

Long COVID is not a new phenomenon. Various post-infection illnesses have been documented in the medical literature for decades. And such conditions bear a striking resemblance to each other. First, an individual is knowingly (or unknowingly) exposed to a pathogen (a virus, bacterium or other microorganism). An acute illness of varying degrees of severity ensues before a partial or complete recovery. But following ‘recovery’, a broad range of symptoms emerge. And these lead to functional decline – in other words, they stop the sufferer from doing the daily activities they would normally be able to do.

Two of these conditions, postural orthostatic tachycardia syndrome and myalgic encephalomyelitis or chronic fatigue syndrome, appear closely related. And their symptoms look a lot like long COVID, too. Both seem to affect more women than men, and additional immune problems are often present.

These similarities support the theory these illnesses result from a hypervigilant immune system. This creates an immune response that inadvertently causes damage to the fragile autonomic nervous system (which regulates the body’s normal functions, like heart rate and blood pressure) while attempting to rid the body of the invading pathogen. However, there are a plethora of other theories and more investigation is needed.

An old stigma

Lack of understanding about these syndromes is reflective of the broad stigmas attached to them – the idea they are psychosomatic and involve the mind and body. The origin of these stigmas can be traced to a series of publications in the latter half of the twentieth century that addressed outbreaks of illnesses after exposure to unknown pathogens.

In 1970, the British Medical Journal published an article by two psychiatrists who had reviewed the case notes of 198 patients from the Royal Free Hospital in North London, where an outbreak of an unknown pathogen had occurred fifteen years prior. The authors determined the disease had no identifiable organic origin and was therefore likely to be caused by ‘epidemic hysteria’. This conclusion was partly justified by the high proportion of women among those infected with the illness.

Publication of this theory in a pre-eminent scientific medical journal gave credence to what became an enduring narrative. The result has been a chronic lack of interest and investment in these debilitating invisible illnesses, which can render people unable to work or participate in society.

A question of definition

The burden of these systemic failings now weighs heavily on a society faced with a worldwide tsunami of post-COVID conditions. And it goes some way to explaining the collective shrugging of shoulders by health authorities when it comes to providing answers for sufferers.

Estimates of how many people infected with COVID go on to develop long COVID vary from 5 per cent to 40 per cent. The large variance is a result of the initial absence of a consistent or unifying set of diagnostic criteria.

Recently the World Health Organization provided a definition of post-COVID conditions. It includes those with a history of likely or confirmed infection with SARS-CoV-2 (the virus that causes COVID) who experience lingering symptoms for longer than two months, which are unexplained by an alternative diagnosis. Defining the illness allows clearer characterisation of who is affected. Long COVID is now known to affect any age group and may be unrelated to initial infection severity. This evidence prompted the US Centers for Disease Control and Prevention to detail an ominous warning about post-COVID health problems that ‘can last weeks, months, or years’.

Multiple case series and observational studies have now identified a high burden of nervous system dysfunction in long-COVID patients. Several studies, including one published in the Journal of the American College of Cardiology, demonstrated that up to 95 per cent of long-COVID patients also meet the international criteria for postural orthostatic tachycardia syndrome. This syndrome can cause lightheadedness, brain fog, fatigue, headache, blurred vision, palpitations, tremor and nausea. These symptoms are often incompatible with carrying out normal daily tasks, which explains why unemployment and disability are high among postural orthostatic tachycardia syndrome patients, despite their young age.

The next wave

Back in March 2021, the American Autonomic Society released a statement warning of the rising presentations of patients to autonomic specialist referral centres with symptoms of post-COVID postural orthostatic tachycardia syndrome. Of particular concern was the insufficient number of physicians familiar with this type of dysfunction to treat the condition. This situation is mirrored in Australia, where only a handful of specialists are familiar with managing such complex cases.

Contrary to popular medical opinion and widely held beliefs, effective therapies exist for underlying conditions like postural orthostatic tachycardia syndrome, which is prevalent in long COVID. Early intervention is key. Treatment needs to be fully explored and implemented before disability support services can be sought.

Time to listen

Our health systems need to absolve themselves of past sins and pay attention to the overwhelming voice of the current sufferers of long COVID and those with other post-infection syndromes or invisible illnesses who have endured decades of medical neglect. Treatment options need to be made available and multidisciplinary teams need to upskill to manage these conditions.

A redefining of what it is to be disabled needs to be explored. Most importantly, these definitions should not be tied to a single cause but to the manifestation of symptoms that culminate in the disability.

2022: Reckoning with Power and Privilege is available now.

AU $32.99

Posted on December 14, 2022
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A Short History of the Aboriginal Tent Embassy: Read an Extract From The Conversation’s Latest Book of Essays

Bronwyn Carlson
Macquarie University

Lynda-June Coe
Macquarie University

This is an extract from 2022: Reckoning with Power and Privilege, a collection of essays brought to you by The Conversation. Aboriginal and Torres Strait Islander readers are advised this article contains the names of deceased people.

Often, people think about the Aboriginal Tent Embassy as something historical, dating back to the 1970s. But it should also be thought of as the site of the longest protest for Indigenous land rights, sovereignty and self-determination in the world.

In fact, this year, the Tent Embassy celebrates its fiftieth continuous year of occupation. Demonstrating its significance to Australian history, it was included on the Commonwealth Heritage List in 2015 as part of the Old Parliament House precinct.

In this momentous year, it’s worth remembering how the Tent Embassy came to be, and acknowledging what it has stood for since its erection in 1972 – and the significance it still has today.

Aliens in our own land

The Tent Embassy began its public life on 26 January 1972. On that day, Michael Anderson, Billy Craigie, Bertie Williams and Tony Coorey left Redfern and drove to Ngunnawal Country (Canberra), where they planted a beach umbrella opposite Parliament House (now known as Old Parliament House). They erected a sign that said ‘Aboriginal Embassy’. With them on that day was their driver, Tribune photographer Noel Hazard, who captured the event in a series of photos.

The term ‘embassy’ was used to bring attention to the fact Aboriginal people had never ceded sovereignty nor engaged in any treaty process with the Crown. As a collective, Aboriginal people were the only cultural group not represented with an embassy. According to Aboriginal activist and scholar Gary Foley, the absence of an Aboriginal embassy in Canberra was a blatant indication Aboriginal people were treated like aliens in their own land.

Initially, the protesters were making a stand about land rights following then prime minister William McMahon’s speech dismissing any hope for Aboriginal land rights and reasserting the government’s position on the policy of assimilation. The Tent Embassy was therefore a public display of our disapproval of, and objection to, the policies and practices of the government.

It has since become an acclaimed site of our continued resistance to the continuity of colonial rule.

Demands of protesters

Police who were patrolling the area at the time of the Tent Embassy’s erection asked the protesters what they were doing outside Parliament House. They said they were protesting and would do so until the government granted land rights to Aboriginal people. The police were said to have responded, ‘That could be forever.’

As it turned out, it was not illegal to camp on the lawns of Parliament House, so the police could not remove the protesters.

Later, on 6 February 1972, the members of the Tent Embassy issued their list of demands to the government. The demands were clearly about our rights as Aboriginal people to our homelands, regardless of the fact cities were now built on the land or mining companies were interested in the bounties within. Compensation was called for in the instances where the land was not able to be returned. There were also demands for the protection of our sacred sites.

While the McMahon government cared little about negotiating with the protesters, the leader of the Opposition, Gough Whitlam, visited the Tent Embassy and publicly proclaimed a promise of Aboriginal land rights under a future Labor government. There was widespread support for the Tent Embassy from Aboriginal and Torres Strait Islander people and allies across the continent, and indeed the world.

Media attention also grew as it became obvious the Tent Embassy and protesters were not going to move on. Other Aboriginal activists joined the embassy, including Foley, Isabel Coe, John Newfong, Chicka Dixon, Gordon Briscoe and many others.

Forced removal and revival

The government was not too keen on being reminded Aboriginal people were demanding rights, so it amended the Trespass on Commonwealth Lands Ordinance to make it illegal to camp on the lawn of Parliament House. This gave the police the authority to remove the protesters.

The ordinance was but a few hours old when police attempted to forcibly remove the embassy. They did so to the roar of the crowd chanting ‘Land rights now’. A violent confrontation with police ensued.

On 12 September 1972, the ACT Supreme Court ruled against the use of the trespass laws, and the Tent Embassy was temporarily re-erected before being removed again the following morning. Then, at the end of 1972, the Coalition government led by McMahon lost the federal election to Labor Whitlam was able to keep his promise in part – he did give the land title deeds to the Gurindji people. This was captured in the historical photo by Merv Bishop of Whitlam pouring a fistful of dirt into Vincent Lingiari’s hand.

While this iconic image has become a demonstration of what might be possible, the work of the embassy is not yet done. Land rights across the continent have yet to be fully achieved.

The Tent Embassy was re-established in 1973 and remained until activist Charles Perkins negotiated its removal pending the enactment of the Aboriginal Land Rights Act in 1976. In the ensuing years, it occupied several other sites around Canberra, including the site of the current Parliament House. In 1992, it returned to its original site on the lawn of Old Parliament House to mark the twentieth anniversary of the original protest.

Eleven years later, much of the Tent Embassy was destroyed by fire in a suspected case of arson. The police once again attempted to remove protesters from the site under orders from the federal government’s National Capital Authority.

An enduring symbol of protest

Today, the Tent Embassy remains on the lawns of Old Parliament House as a reminder of the successive failures of subsequent governments to address the demands for justice represented by the embassy and its people. As Foley reflects in his history of the embassy:

That it has endured for [five] decades as a potent symbol rejecting the hypocrisy, deceit and duplicity by successive Australian government is a testament to the refusal of large numbers of Aboriginal people to concede defeat in a 200-year struggle for justice.

Nowhere else in the world have we seen such longevity around a site of protest. The Aboriginal Tent Embassy is an impressive achievement that demonstrates the tenacity of Aboriginal and Torres Strait Islander people and our continued fight for the reclamation of our lands and sovereign rights as First Nations peoples.

2022: Reckoning with Power and Privilege is available now.

AU $32.99

Posted on December 6, 2022