OFFICIAL STATEMENT OF THE UNIVERSITY OF SYDNEY DISABILITIES COLLECTIVE ON THE EMERGENT COVID-19 PANDEMIC

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Disabled people are always disproportionately affected by coronaviruses. Our community possesses valuable knowledge and skills that are direly relevant toward the formulation of an effective community response to the current pandemic. Our survival strategies are now the survival strategies of the entire population. We are already familiar with effective hand washing techniques, social distancing whilst sick, and navigating overloaded hospital systems. For many of us, flu season is an annual crisis that the community at large is ill equipped to handle. We know how to respond to COVID-19 because we do this every year.

Over the past weeks, much of the institutional, medical, media, and activist response to the COVID-19 outbreak has been informed by an underlying rhetoric of eugenics. This rhetoric positions disabled and elderly people as expendable and disposable. The logic of eugenics is the logic of capitalism: those who do not possess productive worth are considered worthless. It should go without saying that this is unacceptable, not only because every life has inherent worth but because ranking members of a community by perceived value is detrimental to everyone. We should not have to point out that disabled people are valuable, or that the sacrificial reasoning of eugenics would have robbed the world of great minds like Albert Einstein, Stephen Hawking, and Frida Kahlo. We should not have to argue that we are capable of greatness, because the most profoundly ordinary disabled person still deserves to live as much as anyone else. A society where only the fittest survive is a society that has lost what it means to be human.

Positioning disabled people as inevitable casualties of COVID-19 strips our community of agency and obscures the structures that inhibit our survival. Crucially, it also ignores the valuable insights of a group of people more equipped than any other to understand and effectively respond to medical crises. We have had to develop networks to deal with financial precarity and lost working hours due to illness; nearly 40% of Australians living in poverty are disabled. We have had to fight for healthcare access in medical systems that are overcrowded, understaffed, and held hostage by the indifference and cruelty of capitalism, leading to the systems themselves becoming indifferent and cruel. We have kept each other alive through trauma and isolation. We have been fighting for each other because nobody else will.

Medical institutions hold a dominant position within capitalism and are often complicit in structures of marginalisation. Uncomplicated narratives of hospitals being places of healing ignore the real harm that capitalist, eugenicist and neoliberal logics are causing within them every day. It is incredibly important that we begin working towards a community based approach towards health, which takes advantage of the science, but also gives people agency and allows them to access care on their own terms. We note that the Royal Commission on the abuse and neglect of disabled people has been suspended. This has been done at a time in which exposing the harsh cruelties and realities of being a disabled person in this country has never been more important.

University bureaucracies around the country are struggling to respond effectively to closures and online access requirements. These requirements have always existed for disabled people, and if equitable access for disabled students and staff existed already then we would not be in this situation now. We are bitterly aware that the measures being implemented in response to the pandemic are measures that disabled people have been organising towards for decades, and that we have been consistently denied.

Our needs are your needs. We need testing centres and social distancing. We need medical infrastructure, ventilators, and widespread adoption of hygiene protocols. We need effective containment protocols rather than half-hearted measures attempting to flatten an impossible curve. We need systems of community support, mutual aid, and home nursing care, without exploiting the unpaid labour of informal caregivers, but also without prioritising institutional responses over community responses. We need immediate and widespread reforms to welfare and the NDIS, so that people do not die simply because they cannot afford the supports and resources they need to live. We need to avoid authoritarian measures that reinforce military and police powers at the expense of ordinary people. We need to avoid punitive measures like outrageous fines, but instead work towards a social provisioning of needs, such that vulnerable people do not feel compelled to break self-isolation requirements to access the basic necessities of life. We need sick leave and eviction freezes. We need to commit ourselves to anti-racism, to explicitly reject the blame, hatred and violence being directed against Chinese people, and to recognise and dismantle the colonialist structures causing disparate health outcomes for Indigenous people. We need the many fierce voices of the disability community, exhausted by years of silence enforced by the paternalism of those who claim to be fighting for justice, to be elevated and heard. We need to understand that “the vulnerable” includes all of us, because nobody is invulnerable. We need to be interdependent, because nobody is independent. We need to build a community that cares for its own; we need love and solidarity, and we need to give a shit about each other.

This is not a complete list of demands. The two people writing this statement are both considered “high risk”; if either of us catch COVID-19 it is very likely that we will experience severe complications or die. We are not representative of all disabled people, nor of all the people worst affected by the outbreak. Pandemics work along vectors of marginality, and other “high risk” groups include people in prison, people in institutions and group homes, elderly people, and Aboriginal and Torres Strait Islander people. An effective community response requires consultation with the entire community. This statement is a necessarily incomplete component of an ongoing conversation.

Disabled people make up around a fifth of the general population, and around half of Aboriginal and Torres Strait Islander communities. We are not an irrelevant fraction of society; we are not identifiable on sight; we are not inherently separated from the non-vulnerable population; we are not all neatly contained in hospitals or institutions (and those of us who are hospitalised and institutionalised are even more disempowered). We live among you. We live in the world and we want to continue living in it. The responsibility for effectively responding to this pandemic belongs to the entire community, not just for our survival, but for the survival of the community itself.

 

Signed,

The University of Sydney Disabilities Collective

Margot Beavon-Collin, 2020 Disabilities Officebearer

Robin Eames, 2018 Disabilities Officebearer

NYWF

black and white photo of robin doing a wheelie with their manual wheelchair, accompanied by text reading National Young Writers Festival; Robin M Eames 2019 Artist

image: black and white photo of robin doing a wheelie with their manual wheelchair. Text reads National Young Writers Festival; Robin M Eames 2019 Artist

very excited to be heading up to the National Young Writers Festival in Newcastle again this year! I’m doing a slightly absurd number of events, 4 of which are on Friday, so if by Friday evening I’m looking very sleepy and a bit ragged around the edges – you know why.

I am also one of the festival photographers, so will be intermittently wandering around being a massive dork about lighting conditions. (actually quite a small dork)

FRIDAY 4 OCTOBER

Born in the Wrong World: the role of genre fiction in queer culture
11:30am-12:30pm @ Newcastle City Library
(with the members of Transgender Writers and/or Writers with Intersex Variations Australia)

There have been many genres that paint the queer experience in a number of ways – genres like sci-fi, fantasy, and even horror. Join this discussion moderated by guest organisation Transgender Writers and/or Writers with Intersex Variations Australia.

Let’s Talk About: Tokenism
4pm-5pm @ Watt Space Gallery
(with Tilly Lawless, Debbie Zhou, and Nevo Zisin)

‘Diversity’ has become somewhat of a buzzword in the arts, but what does it actually mean? How does this differ or intersect with tokenism? Join us for this critical discussion defining the ins and outs of tokenism, and the harms and benefits of various approaches to ‘diversity’. This forms one of three in our ‘Let’s Talk About’ series.

Vampires belong in MY genre!
8pm-9pm @ Newcastle City Library
(with Claire Cao, Ray Cox, Meleika Gesa-Fatafehi, Jes Layton, Katharine Pollock, and Alexander Te Pohe)

It’s time to pit horror, sci-fi and fantasy against each other in this three-way genre fiction debate! At this event the teams will battle it out to prove once and for all what genre vampires truly belong in. Get ready for things to get heated (and probably a little ridiculous).

Late Night Readings: LIGHT MY FIRE
9:30pm-11pm @ Newcastle City Library
(with Freda Daly Sadgrove, Alison Evans, Tilly Lawless, Anthony Nocera, Claire Sullivan, Rita Therese, and Eugene Yang)

What keeps you warm at night? Whether it’s the touch of your lover, your cat at the end of your bed or a neat whiskey at 3am, at this reading we’ll hear about all the things that bring warmth on a cold winters night. Prepare for things to get sexy, funny and a bit emotional at this late-night reading.

 

SUNDAY 6 OCTOBER

Inclusive Writing about Sex and Bodies
11am-12pm @ Newcastle City Library
(with Tilly Lawless)

In this panel, Archer Magazine contributors discuss the intricacies of writing about sex in inclusive and respectful ways. The panel will explore what it is like to write about personal experiences with sex, sexuality and gender, and what it means to write about the body in nonfiction.

Re-envisioning mythology in the 21st century
12pm-1pm @ Newcastle City Library
(I am excited about all of these events but ESPECIALLY excited to inflict mythic nonsense on an unsuspecting audience during this solo workshop)

What is the power of myth in the modern age? Barthes writes that myth is anti-revolutionary because it explains and embeds social structures, whereas poetry is revolutionary because it unravels those structures. Myth and folklore often neglect or suppress the agency of marginalised peoples, but they also contain subversive elements that can be harnessed and reworked. Queercrip writer, artist, and historian Robin M Eames runs a workshop on adapting myth through a radical lens.

 

Problem bodies and queer legacies

Pretty stoked to share my first peer-reviewed academic publication, available now in Lilith 💜

Eames, Robin. ‘Problem bodies and queer legacies: Rethinking approaches to trans history in the case of Harry Crawford, Sydney, 1920’. Lilith: A Feminist History Journal 25 (Nov 2019): 50-62.

Abstract:
This article offers an alternative interpretive model for queertrans antecedence, focusing on the case of Harry Crawford in 1920s Sydney. Crawford was ostensibly on trial for murder, but his court case was more concerned with the social crime of gender transgression. He had been assigned female at birth but lived, worked, and married as a man. Although scholars have noted Crawford’s relevance to emerging histories of transgender lineage, he has primarily been interpreted as a butch lesbian, a ‘passing woman’, or as a kind of gender non-conforming optical illusion. This article seeks to reframe analysis of Crawford’s gender transgression by locating him within a broader genealogy of problematised queer and transgender expression.

Available here, or here (open access).

Peace

Today I have been rereading Bill Peace’s excellent blog posts over at Bad Cripple. I am very sad to learn of his death. I didn’t know him but his work was such a balm to me when I first began using a wheelchair. It feels strange to describe such fierce writings as a ‘balm’ but I needed that fierceness more than anything.

Academia is inaccessible by design – not just to disabled people but to many other marginalised groups. But none of my other marginalities have affected me to the extent that ableism does. Becoming a cripple fundamentally changed my relationship with the world and everyone in it. It is hard not to be cynical in such a hostile world. Everything is a fight. But there are such joys to be found along the way, and Dr Peace’s work helped me to figure that out.

I’ve been neglecting my own blog lately but I’m going to try to write more amidst all the PhD chaos. We have lost a powerful voice, but if many more voices can rise up to fill the void then I like to think Dr Peace would get some satisfaction out of that.

I’m leaving some of his words here as a reminder, and a call to action.

“The advance of disability rights is taking place but at a glacial pace. For my fellow cripples, hang in there. Tomorrow will be a better day. Don’t give bipedal bastards the satisfaction of giving in. Get outside. Live life to the fullest.”

“I do not like to upset people. I wish I did not have to fight a battle every time I try to attend an academic meeting or teach on campus. But battle I do. And yes I upset a lot of people. In fact, it seems to me the only way to make change is to upset others… If people are uncomfortable with this I am sorry but I will not be silent. Silence leads to isolation and exclusion. I will not let that happen.”

“Suddenly a strong gust of wind hit us from behind. I started to fly forward. I could feel the wind blowing me in a way I have never felt before. I started to go fast–I mean really fast. I started to hold on the push rims to slow my momentum and thought to myself why? Why am I slowing down? Well, I was trying to be polite. The poor biped with me felt no such joy. I thought screw it, laughed loudly, held my arms out to catch more wind and let myself go. Without pushing the wind started to propel me forward. It was the best sensation I have felt in years! I once again felt one with my wheelchair…

Imagine if we as a society valued those that use wheelchairs and acknowledged how empowering a wheelchair is. Imagine if we valued the inclusion of those that use wheelchairs. Imagine if we forcefully rejected the notion people with a disability were special. Imagine if all public venues were accessible–and I do not mean an abscure rear entrance no one knows how to locate. Imagine if wheelchair users could get in the front door of all buildings and all hotels, motels, trains, planes, and buses. This sort of utopia does not exist. Unfortunately I doubt I will live long enough for such a utopia to emerge… What we need however is much more fundamental. We need the social mandate and will to demand society be made accessible to all.”

LOVE-LIES-BLEEDING

I have a poem published in the most recent issue of Voiceworks, LOVE-LIES-BLEEDING.

Aphrodite is the oldest of the Olympian gods, and I thought about exploring a darker, more primordial reading of her. As the goddess of love and beauty, her marriage to disabled Hephaestus is often seen as a cosmic joke. I wanted to see that conflict resolved with a queer turn.

This will be my last poem in Voiceworks, since I turned 25 a few days after the submission deadline. I am deeply grateful to Voiceworks editor Adalya Nash Hussein for helping shape this poem into something I am sincerely proud of (and for being very patient while I rambled on at length about mythic context).

The issue includes a breathtaking illustration by Iona Julian-Walters accompanying my poem. You can pick up a copy here.

 

LOVE-LIES-BLEEDING

Here’s another version. Aphrodite is an old god,
older than most. She is born when Cronus cuts off
his father’s dick and flings it into the ocean. Around
the severed organ silver foam wells up, and in time
a girl takes shape in the crest of the wave, her body
pale and shining. When she emerges from the water
grass grows beneath her feet. Her outline wavers
a little in the blush of dawn, lit around with gold.
This is before she knows the form of her divinity.
She thinks she might be a goddess of the morning,
or of summer blossoms, or birdsong. But her teeth
are a little too sharp for that, the arch of her throat
too cruel. She lacks the batlike wings of her infernal
sisters, the jealous Furies, but there is something
in her eyes that resembles them. What she wants,
she takes. Her attention is first drawn to her husband
by the bright rubies winking in his earlobes, then by
the delicate treasures he crafts as courting-gifts:
grand chariots, jewelled chalices, fine-wrought chains.
His prosthesis is simple but lovely, a platinum frame
spun lightly around the scarred warp of his leg.
Hephaestus, like her, has an eye for beauty. Later
outside Troy the goddess hears a bloodcurdling cry
as brazen Ares comes blazing through the mortal
ranks, his eyes flashing with hellish flame, red with
gore, beautiful and terrible. She takes him to her bed
not long afterward. Stripped of his bloody raiment,
spilled out against her pillows, the god of strife is
strangely vulnerable. His hands are soft at his sides.
Aphrodite has no mercy in her: she rises over him,
bites and scratches, sinks her claws deep into his flesh.
Her husband finds them there like that. Ares glowing
under the light of the moon, Aphrodite pinning him
down. Hephaestus stops in the doorway, his shadow
stretching out over their bodies. His knuckles are white
around a golden net. His eyes are burning. Aphrodite
arches her back, tips her head back lazily to meet her
husband’s furious gaze; then she opens her arms to him
as Ares shudders beneath her. A moment of hesitation.
The golden mesh slips out of his hands. He strides forward.

CHRONIC ILLNESS, DISABILITY, & DIGITAL LIFE

I was very honoured to host a podcast episode for the Digital Writer’s Festival recently: Chronic Illness, Disability, and Digital Life, with CB Mako, Gemma Mahadeo, and Katerina Bryant.

You can listen to the podcast or access a transcript here.

When, in an ableist society, one’s access and participation in IRL spaces may be limited and fraught, what possibilities can the virtual sphere provide? Join queercrip activist and artist Robin Eames, and writers Katerina Bryant, CB Mako and Gemma Mahadeo as they discuss their relationships with disability, chronic illness and creative practices in the virtual realm. A conversation about the politics of visibility/invisibility, the body, freedom and autonomy online. Produced by Thanh Hằng Phạm.

From the episode:

Robin M Eames:            What advice would you give to younger emerging disabled and chronically ill writers regarding digital spaces?

CB Mako:                      For me, it would be, if you’re an emerging writer like myself, constantly ask for space. I know it’s frustrating, exhausting, it’s a journey, it’s a long battle, but we have to do that, and we intercept and ask for those spaces. If in terms of technology, if you need a technology to have the space, if there are grants out there that would help us do the work that we need to do, I hope there is. There’s NDIS, but unfortunately, I don’t know how NDIS would work in our area, because it hasn’t rolled out yet. That’s called the National Disability Insurance Scheme, for those who are listening outside of Australia. So, it’s a long journey, and, to have this space with Digital Writers is a good step, it’s a beginning. I hope other producers, other programmers would give us the space as well.

Gemma Mahadeo:        I’d say to emerging writers that identify as disabled, to not be ashamed of stating what your access requirements are, and your voice is valuable. No one will have the perspective that you do. So, it’s going to be really hard, but have faith that you deserve to be heard, and producing the work that you’re producing. Don’t be ashamed about how little or how much you’re producing, because personally, I think health should come first before creativity. You will produce your best stuff when you feel good about yourself, and feel healthy. It took me a long time to learn that one. So, don’t be ashamed of having to step back also, from online spaces or real life spaces, if that’s going to be better for your health, because it might look difficult to other people, but you’re not being difficult looking after yourself.

Katerina Bryant:           For me, I would say, take the time to find what works for you. Don’t rush in creating your work, like you said Gemma. Be generous to yourself, and know that there are communities out there for you, even if you feel as though your situation or your illness or experience of disability is complex, or a little different. There are people out there for you, and there’s art out there for you to both experience and to make.

Robin M Eames:            I suppose my own advice would echo probably all of that, but also, just try not to be discouraged when people are awful, because people can be awful. A lot of the time, it’s not even because they’re being malicious. It’s just because they don’t understand. A lot of the time, it can feel like all we should need to have our needs met, is to be able to be heard, but sometimes you need people to be willing to listen. It’s not your fault if they don’t, it’s not your fault if a space is inaccessible for you.

Robin M Eames:            If you can’t access a space, it’s not on you. It is not a reflection on you. It’s all right if your needs are different to other people’s, and it’s up to society to create spaces that everyone can use, and interact with each other. It’s not your responsibility. But at the same time, it can be so powerful to reach out to other people, like both people who don’t experience the things that you’re experiencing, and the people who do, because we can’t understand each other until we’re talking to each other, and listening to each other.

Robin M Eames:            It’s important as well, not just to talk, but to listen and try to keep in mind that everyone, everyone has different needs. We’d be better off I think, if we could approach interaction in the hope that everyone can get their needs met as much as possible.