Westerly is proud to present ‘V for Vulnerable’ by Adele Aria as one of the articles appearing in our newest print issue, Westerly 65.1 (also in PDF and ePub).
We are particularly pleased to present Adele’s writing here in open-access form, as ‘V for Vulnerable’ itself speaks to the additional challenges people living with illness and/or disability often face in accessing forms of support and relevant information. As the piece makes clear, such inequity is especially pronounced during times of crisis, such as last summer’s bushfire emergency in Mallacoota. While COVID-19 continues to test society, it is critical that governmental structures and forms of communication provide adequate support to those already disadvantaged by society. ‘V for Vulnerable’ highlights both the obvious and subtle forms of exclusion that currently hold sway, and argues passionately for inclusivity at all levels.
Westerly 65.1 is now available for individual purchase in print and digital copy (PDF and ePub), or via subscription to Westerly. An excerpt from ‘V for Vulnerable’ also appears on the website of the Centre for Stories, in Perth, where Adele completed a Hot Desk Fellowship in 2019. The writing was developed during their time undertaking the Centre’s Inclusion Matters project.
Some nights, I wake in darkness and try to estimate how much time has passed since I fell into inevitably disturbed sleep. I look for the signal of solar-powered fairy lights sprinkling through the cracks of double-layered curtaining to see if it is still early in the night. If the reason for my waking is throbbing joint pain heralding a tomorrow of restricted movement, each major action undertaken with calculations for fatigue and significant mental cost, I know my night will elongate with discomfort. If the reason for waking is nausea brought on by oncological treatment, there’s a chance that throwing up or waiting it out will bring enough relief to allow some deeper rest. Should I have been woken by another side effect of my numerous and often-changing medications, it’s really a bit of a guessing game as to whether I’ll be able to attend to my physical needs then renegotiate my way towards sleep. Were I inclined towards gambling, I would say the odds are generally poor.
Like many, my understanding of the experiences of those immersed in our 2019–2020 Australian season of bushfire terror has been acquired at a distance. I have a perception painted by the words and images shared by those fighting and fleeing reddened vistas, air laden with soot and interspersed with harrowing shrieks of animals and telltale sounds of flames greedily consuming whatever lies in their path. Thousands of Australians and visitors have marked the passage of time by looking skyward, wondering if the shift in orange hues will prove sufficient for an airlift evacuation to become feasible, or if the oppressive darkness settling down over them bears the promise of helpful rains or simply indicates the passage of another long, difficult day. For many, though, only torchlight prickled darkness as they waited hopefully for rescue or news of respite from the dangers of heat, flames, and psychological devastation.
Experiencing a restriction in carrying out an activity as mundane as freely moving about or communicating is a daily occurrence for almost ninety per cent of people with disabilities (Australian Human Rights Commission). For some, the level of restriction is a beast that shrinks and grows in the night, to loom large in the morning, promising a shadow over the day ahead of varying size and shape. For others, the beast holds a relatively consistent shape that will only grow in size and ferocity as they age (Australian Bureau of Statistics; Australian Human Rights Commission); over half of the current Australian population will age into living with disability (Australian Human Rights Commission). Most disabilities impacting mobility are likely to include an element of degeneration, if only because ageing into senior years frequently represents additional physical burdens (Australian Bureau of Statistics). The burden will likely be felt and arguably experienced to some degree by each individual in daily experiences, but it is certainly embedded as an implied judgement imposed by a capitalist society prone to monitoring utility as a measurement of individual value.
During the 2019–2020 bushfire season, mobility challenges are purportedly why initial defence force evacuations were restricted to able-bodied people, as in the case of a Victorian holiday destination favourite: Mallacoota (Topsfield). Unchallenged assumptions seemed to constrain the planning, without any evidence of questions being posed to representatives of those who would potentially be most impacted by the decisions: Mallacoota residents, particularly those with disability. Despite several on the ground clearly retaining the capacity to communicate throughout, including one Twitter user known simply as Brendan welcoming his own feed being used as a source for information, the conversations continued without engaging self-identified disabled and otherwise ‘vulnerable’ individuals (Weedon). Could ‘they’ manage the difficulties, would ‘they’ be adequately supported in such challenging and extreme circumstances, could ‘they’ self-manage their participation in rescue efforts? The implications inherent in these concerns speak to blanket assumptions and, perhaps, mythologies around disability. The othering language was rife and casually used. Spoken about as a small distinct outsider group, as if voiceless and lacking in agency, the rhetoric positioned disabled people to be speculated about, rather than spoken with and listened to. ‘Just like exclusion from mainstream community activities, people with disabilities have been excluded from the
mainstream of emergency management’, observed Michelle Villeneuve, Associate Professor at the University of Sydney’s Centre for Disability Research and Policy (Young).
In reality, ‘disability’ encompasses a larger proportion of the population than many narratives would lead us to believe and is perhaps comfortable to confront. Many of the statistics around disability rely on self-reporting and it is arguable that these are misrepresentative, erring on the low side, as many do not recognise nor willingly identify themselves as living with disability, particularly in light of the societal and systemic ableism which permeates our day-to-day. This skews considerations of how broad the category is, neglecting the many ways in which disability can manifest, not only in different people but even within an individual’s life. It disregards the multitude of complicating factors that can affect the life of each individual with a disability and how comorbidities often evolve, manifesting changing impacts upon those individuals. The discourse of othering is also strongly suggestive of an underlying assumption that those with a disability are incapable of self-management and the assessment of their own capacity to navigate a situation or process. The dominant ableist narrative is steeped in an infantalisation that positions those with disability as immature and non-autonomous, and ultimately denies legitimacy to their opinions, voices and experiences. One friend, a wheelchair user, talks about being addressed frequently with ‘baby voice’ by strangers.
During the Mallacoota bushfire crisis, medication resupplies were delayed for over a week, yet during that same period, evacuations, other supply deliveries, and even dignitary visits continued. It was disconcerting to see medical concerns and, relatedly, the classification of medical personnel so evidently low on priorities. As one urgent care provider noted, doctors and other essential medical services were categorised as ‘non-essential’ (Armstrong). It is telling that 3000 L of beer were prioritised for shipment within the first week, before the pharmacy was restocked and the petrol station received more fuel (McGinn; Brendan).
On January 5th, the Department of Defence released a video to announce that they had evacuated 1,200 people as well as 135 pets from Mallacoota (Department of Defence Australia). In the footage, it could be seen that some elderly, people with visible challenges that needed help navigating gang planks, and even people cradling pets had been included in this particular evacuation effort. Earlier that same day, a backlash had already developed in response to reports that the elderly, people with disabilities, and families with young children under five, including infants, were rejected from the initial evacuation cohort with HMAS Choules (Haynes et al.; Bprophetable). Whilst Emergency Management Victoria said such ‘vulnerable individuals’ would be prioritised by airlift, the viability of airlift evacuation remained an unknown, with visibility making flying prohibitive even for the most adept and well-trained Australian Defence Force (ADF) personnel (Topsfield). In fact, the ADF released footage through social media channels to highlight how challenging the visibility and conditions were proving to be. In the end, observers were perturbed by the apparent difficulties of airlift evacuation yet also left questioning how ship ladders and seafaring mobility requirements, evidently too difficult for young children and people with disability, were able to be navigated by pets and owners carrying pets (O’Malley; ‘Australia fires’). The irony of being marked ‘V’ for vulnerable only to be left behind to survive in the bleak and at that time unpredictable conditions of the Mallacoota township, where environmental conditions were leading to increasing respiratory distress, was not lost on those on the ground and those watching the crisis and aid efforts unfold from afar (Keneally).
There are spaces that are not for you, when your body or mind doesn’t work easily, freely, in the way many stories suggest is the norm. But this norm, this story that we tell ourselves here, in Australia, fits only six out of ten of us and neglects to consider how those six might also age into disability, or might suffer temporary or permanent challenges to mobility, independence or capacity due to accidents or illness (Australian Human Rights Commission). It certainly doesn’t account for the ways in which a crisis situation such as a devastating fire and its ill effects may impact people who have been surviving on a foreshore for days as they await evacuation.
Realistically, any evacuation effort in a highly fraught situation such as the Mallacoota bushfire is likely to occur in a context where there is significant individual and group psychological strain. It would be further complicated by considerable physical burdens due to exposure from noxious pollutants, layered with mental and physical fatigue developed due to the time waiting for rescue efforts to be safe and also from navigating the situation itself. Whether able-bodied (or ‘abled’, an increasingly common term) or otherwise, it is highly likely that people will be functioning at a variety of capacities, modified by fundamental fight, flight, and freeze responses (ever-evolving understandings of this phenomenon notwithstanding) (van der Kolk). Some would be at risk of developing varying degrees of ongoing stress response, such as post-traumatic stress disorder (PTSD). Personal regard and clear communication regarding evacuation options and crisis responses are crucial. Equipping people with an understanding of what is ahead provides a vital sense of control and connection to outcome, which increases efficacy and preparedness (van der Kolk 54). These are surely positive contributors in efforts to ensure the safety and survival of people in such crises. Yet during the Mallacoota crisis, many channels broadcast crisis reports without closed captioning or that cropped out Auslan interpreters (if they were there at all), which constitutes a failure in considering diverse communication needs or accounting for the challenging circumstances in which those most at risk were receiving information (Young). Closed captioning is not only for those with hearing impairment but also useful in environments where there is noise pollution or high stress and anxiety levels, both of which potentially impact ability to process audio inputs (van der Kolk 57).
What if we were to design crisis responses that considered a variance of physical and mental capacities, applying an ultimately more humanitarian lens? Abled and disabled do not exist in a simple dichotomous relationship. There is a spectrum of able-ness just as there is a spectrum of disability. As Lee Kofman so aptly paraphrases George Orwell, ‘the reality is that some bodies are more imperfect than others in the challenges they pose to the status quo’ (Kofman viii). Such considerations may yield a significantly more care-centred and ultimately human-centred approach. It could be hoped that it would result in the embedding of policies for the delivery of crisis responses and communications that enhance the likelihood of positive outcomes. In improving this, the corresponding reduction of potential for negative consequences including PTSD, undue stress burden and anxieties of exclusion should not go undervalued. Perceptions of exclusion are particularly devastating as they imply a threat to survival and even should those fears come to be allayed eventually, the resultant belief and experience can have a devastating impact in the short and long term.
Let me be clear that I am in no way suggesting the actions undertaken by the first responders at Mallacoota, particularly firefighters, or even the ADF, were lacking or anything short of heroic and commendable. However, the underlying thinking of excluding disabled people and other vulnerable people and neglecting to communicate openly and effectively in an inclusive manner revealed a problematic approach. Our provision of support needs to be fulfilled in a humane and respectful way that recognises the diversity of human capacity and suffering in crisis, incorporating understanding of the spectrum of disability and ability. There are human consequences to the tragedy of our bushfires and we need to minimise the potential of additional negative consequences to those who already face stigma and the burden of navigating a world designed for others. In doing so, I suggest that it would result in more effective responses for all. Designing for a diversity of capacity, in the face of the high likelihood of further bushfire crises across our continent, is designing for all Australians.
Armstrong, Dr April. Facebook Post, 24 January 2020. Sourced at: https://www.facebook.com/groups/mallacoota/permalink/3202191379795882/.
‘Australia fires: navy rescues people from fire-hit Mallacoota’, BBC News, 3 January 2020. Sourced at: https://www.bbc.com/news/world-australia-50975266.
Australian Bureau of Statistics. ‘4430.0—Disability, Ageing and Carers, Australia: summary of findings, 2018’, 24 October 2019. Sourced at: https://www.abs.gov.au/ausstats/abs@.nsf/mf/4430.0.
Australian Human Rights Commission. ‘Face the Facts: disability rights’, 25 February. Sourced at: https://www.humanrights.gov.au/our-work/education/
Bprophetable. Twitter Post, 5 January 2020. Sourced at: https://twitter.com/
Brendan. Twitter Post, 11 January 2020. Sourced at: https://twitter.com/brendanh_au/status/1215796675245043713.
Department of Defence Australia. ‘HMAS Choules Bushfire Assist’, from Australian Defence Force, 5 January 2020. Sourced at: https://www.youtube.com/watch?v=1SAo_oXseyA.
Haynes, Nalini, Annabelle Lee, and Emma Streeton. Twitter Post. Dark Matter Zine, 5 January 2020. Sourced at: https://twitter.com/DarkMatterzine/
Kofman, Lee. Imperfect. Melbourne: Affirm Press, 2019.
Kristina Keneally. Twitter Post, 5 January 2020. Sourced at: https://twitter.com/KKeneally/status/1213586454946861056.
McGinn, Christine. ‘Navy delivering beer to fire-hit Vic town’, Goulburn Post, 9 January 2020. Sourced at: https://www.goulburnpost.com.au/story/6573849/navy-delivering-beer-to-fire-hit-vic-town/.
O’Malley, Mary. ‘“Nature has spoken and she is furious”: on the beach in Mallacoota’, The Sydney Morning Herald, 6 January 2020. Sourced at: https://www.smh.com.au/national/koalas-shrieked-as-they-burnt-on-the-beach-in-mallacoota-20200106-p53p4a.html.
Tospfield, Jewel. ‘Families stuck in Mallacoota after navy ships discouraged children under 5’, The Age, 4 January 2020. Sourced at: https://www.theage.com.au/national/victoria/families-stuck-in-mallacoota-after-navy-ships-discouragedchildren-under-5-20200104-p53otm.html.
van der Kolk, Bessel. The Body Keeps the Score. London: Penguin Random House UK, 2014.
Weedon, Alan. ‘Bushfires in Mallacoota didn’t stop Brendan tweeting
Victorian town’s tragic story to the world’, ABC News, 3 January 2020. Sourced at: https://www.abc.net.au/news/2020-01-03/bushfires-victoria-mallacoota-brendan-unesco-australian-fires/11838100.
Young, Evan. ‘Research shows people with disability are disproportionately
at risk in times of disaster. this is Gaele’s story’, SBS News, 8 January 2020. Sourced at: https://www.sbs.com.au/news/what-it-s-like-to-experience-a-bushfire-evacuation-while-living-with-a-disability.
Combining lived experiences of complex trauma, disability, and queer identity with postgraduate studies in Human Rights and professional experience, Adele Aria is a writer-activist for human rights and social change. They have contributed to publications and literary events in Singapore and Australia, including the Feminist Writers Festival and Emerging Writers’ Festival. A person of colour, Adele is grateful to have been welcomed onto, and to be living and writing upon, Noongar Boodjar.