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'V for Vulnerable' – Adele Aria

On The Page is a series of writing and poetry submitted to the Centre for Stories as part of the 2019 Centre for Stories Inclusion Matters Hot Desk Fellowship.

Adele Aria writes non-fiction, poetry and short fiction, using story-sharing to explore identity, the politics of existence, and the ways in which we integrate personal and shared histories. Combining lived experiences of complex trauma, disability, and queer identity with postgraduate studies in Human Rights and professional experience, Adele is a writer-activist for human rights, social change, and building the practice of empathy. They have contributed to publications from Singapore and Australia, including anthologies, the Feminist Writers Festival, Westerly, and the forthcoming book Voices from the Darker Side of Development. A person of colour, Adele is grateful to have been welcomed onto and living and writing upon Noongar Boodjar.


V for Vulnerable was first published in Westerly Magazine, you can read the full story here.

[EXTRACT]

V for Vulnerable by Adele Aria

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 toward 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 an additional physical burden (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.

[1] 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.

[2] Australian Human Rights Commission. ‘Face the Facts: disability rights’. 25 February 2015. Sourced at: https://www.humanrights.gov.au/our-work/education/face-facts-disability-rights.

[3] 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-discouraged-children-under-5-20200104-p53otm.html.

[4] 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.

[5] 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.


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