I grew up inland, seven hours from the sea, and once a year we made a trip to Sydney or the Central Coast to visit the beach. I liked the fizzle of bubbles on my skin, the tang of salt on my tongue, the waves’ rhythmic curling and crashing. When I was underwater I was completely deaf, the ocean plugging up the ear which had some hearing.
On one holiday, when I was ten, I surfaced from a dive and saw people making for the shore. A lifeguard was shouting into a megaphone, but I didn’t have enough hearing to make out the words. I looked around for my brother, who was wading towards me. ‘There’s a shark, Jess! You have to get out of the water.’ We swam furiously through the waves, my breath sharp and shallow. When I felt gritty sand beneath my feet and sloughed, relieved, out of the water, I wondered: what if my brother hadn’t been there?
The incident with the shark highlights why I tend not to take physical risks. I map out a walking route to work that has minimal traffic, I swim in enclosed spaces such as pools, I rarely run in the dark, and I never walk in the bush without a companion. These decisions are based on my knowledge that, if I call out for help, I will not be able to hear an answer, nor will I be able to hear someone or something about to attack me. As the world becomes more precarious, I mull over what I will need to do to stay safe.
From the Millennium Drought to the Brisbane floods to the Black Summer bushfires, Australians are feeling the impact of climate change. We have breathed smoke into our lungs, despaired at our shrivelled gardens, kept showers to a minimum, watched ash fall into our backyards like snow, and been unable to escape the dank smell of mud. We have become stressed and afraid. For disabled people, these stressors have been exacerbated by disinterest and neglect.
Research by the University Centre for Rural Health following the 2017 Northern Rivers floods found that people with disability and their carers were more likely to have their homes flooded and be evacuated, and to experience disruptions to support networks and social services. Disabled people were unable to reach the evacuation centre, and found flood warning messages were inaccessible due to low literacy and confusion. Verbal directions were not accompanied by Auslan for deaf people. Six months on, disabled people were still at a relatively high risk of post-traumatic stress disorder.
Not only are disabled people neglected during disasters; they are also missing from Australian literature about disaster. Nearly twenty per cent of the Australian population has a disability, yet only a handful of books feature disability, disaster and climate change (for example James Bradley’s Clade and Briohny Doyle’s Echolalia). Even fewer of these books are authored by disabled people themselves.
In 2016, editors Tsana Dolichva and Holly Kench published Defying Doomsday, a collection of stories featuring disabled and chronically ill protagonists dealing with apocalyptic scenarios. The stories highlight that survival isn’t necessarily about the ‘fittest’. Rather, ‘it’s the most tenacious, stubborn, enduring and innovative characters who have the best chance of adapting when everything is lost’. In his introduction to the collection, Robert Hoge observes that disabled people already live ‘in a post-apocalyptic world … So much of our world is a not-made-for-us space that disaster may as well have already struck. And that’s exactly what makes the stories in this anthology so crunchy and interesting—we are already fighting and thriving in interesting and diverse ways. When the apocalypse comes, we’ve got a head start.’
Four years later, in the midst of the pandemic, Dolichva followed up this publication with Rebuilding Tomorrow. This collection of stories illustrates how disabled and chronically ill people can not only survive an apocalypse, but can also ‘held rebuild afterwards. Even better, when a new community is built from the ground up, inclusion and accessibility can be baked into the design from the start.’
In the same year, in 2020, Asphyxia published Future Girl, a story about Piper, a Deaf teenager in near-future Melbourne, which is on the brink of ecological collapse. After meeting a CODA (Child of Deaf Adult), Piper learns to embrace her deafness. At the same time, she begins to grow her own food instead of relying on processed food brought in on trucks. The flourishing of Piper’s Deaf identity, twinned with the growth of plants, is significant. In Piper’s precarious world, disability does not represent deficit, but plenitude.
Notably, these works are speculative. Perhaps they reach into the future because the contemporary situation is too bleak for disabled people.
At a policy level, things are starting to change. The Sendai Framework for Disaster Risk Reduction 2015-30, the first international agreement on disaster management to include people with disabilities and their needs, has been endorsed globally. Australia’s Disability Strategy 2021-31 includes, for the first time, information on disability inclusive emergency planning. Funded initiatives in Queensland, New South Wales and Victoria have seen the development of more inclusive preparations for disaster management.
It’s time for our storytelling to catch up. We need stories that, like Asphyxia’s and those in Dolichva and Kench’s edited collections, illustrate disabled people’s skills in navigating built and natural environments.
Interdependency is a core concept in disability culture. Disabled people rely on others for support and, often, survival. In my own case, I need to ask for help when waiting for planes and trains, as I’m unable to hear announcements from the loudspeakers. For most of my childhood, I relied on my brother for help with navigating situations in which I could not hear, or in which I felt unsure and apprehensive. What if this awareness of dependency were translated to an able-bodied world, challenging conventional understandings of individualism and autonomy? Perhaps more people would acknowledge that not only do we depend on other humans for our survival, but we also depend on oxygen, water, bacteria, birds, trees and bees. Perhaps there would be greater understanding that, if we lose our support networks, both human and non-human, we will not survive.
In the documentary Examined Life (2008) written and directed by Astra Taylor, artist and writer Sunaura Taylor walks the streets of San Francisco with philosopher Judith Butler. Although Taylor is in a wheelchair, she still describes herself as going for a walk. She and Butler talk about the ways bodies are constrained by norms, and that these norms are often more tiring than the bodies themselves. When Taylor goes into a cafe and carries a coffee cup with her mouth, the process is made more difficult by the fact that the norm is to hold a cup, not carry it in one’s mouth. And yet, when we ask for help, as Taylor might with her coffee cup, there is, Butler notes, ‘a challenge to individualism that happens at the moment in which you ask for some assistance with the coffee cup’. In a world in which we will need more care and community, not less, such challenges are critical.
Disabled people have also developed resilience in their daily lives. We live in an uncomfortable world, and we have learned how to adjust and use lateral thinking to make our existence more comfortable. All of these skills will help humans adjust to a climate changed world. Why are they not recognised more widely?
Taylor observes that she moved to San Francisco because it is the most accessible city in the world. The fact that there are simply more disabled people around means there is more social acceptance. Non-disabled people, she says, ‘have learned how to interact with them and are used to them in a certain way. And so the physical access actually leads to a social access and acceptance’.
In Australia, despite the support of the NDIS, compromised though it is, disabled people are still not particularly visible or valued. One easy way for nondisabled people to understand our lives and our history is to read works by disabled writers. Austlit, the Australian Literature database, has lists of works about disability and dystopia, although not all are written by disabled authors.
Writing is a tough gig, and when the unemployment rate of working-age people with disability is twice that of non-disabled people, the difficulty for disabled people to write their stories becomes apparent. The Australia Council’s support for disabled people is an important initiative, as are accessible residencies at places such as Varuna, and programs such as Writers Victoria’s Writeabality, the Centre for Stories’ partnership with My Place, and Writers SA’s Deaf Writers. In general, however, support for disabled writers is lagging, and Australian literature is the poorer for it.
If my brother had not been in the sea with me the day the shark appeared, I would likely still have rushed to the shore, or my parents would have waded in to help me, or I would have plucked up the courage to ask someone else. I have since learned that, generally speaking, people will help if you ask them. But non-disabled people’s memories are short and faulty, and to have to ask for help over and over again is exhausting.
What would happen, I wonder, if emergency services drew on disabled people’s knowledge, experience of interdependency, and capacity for adaptation? What if systems were created to ensure that disabled people were put first, and not last? What kind of world would exist if disability was taken for granted, rather than tacked on?
Let’s write some stories to find out.
Jessica White is the author of the award-winning A Curious Intimacy and Entitlement, and a hybrid memoir about deafness, Hearing Maud, which won the 2020 Michael Crouch Award for a debut work of biography and was shortlisted for four national awards, including the Prime Minister’s Literary Award for Non-fiction. Jessica has received funding from the Australia Research Council, the Australia Council for the Arts, Arts Queensland and Arts South Australia and has undertaken national and international residencies and fellowships. She was a 2020-2021 Juncture Fellow for the Sydney Review of Books and is a 2022-2023 Arts Leader for the Australia Council for the Arts. Jessica is currently a Senior Lecturer in Creative Writing and Literature at the University of South Australia.