Commissioned essay for the Australian Centre of Contemporary Art, on Sam Petersen’s installation I’m still feeling it, exhibited in Overlapping Magisteria, 2020. Published in the exhibition catalogue.

Disabled otherworlds

For many of us, it is also a way of ‘being in the world’, a world that in many ways was not made for us and actively resists our participation. Through poetry, we are able to remake and reinvent that world.

– Jennifer Bartlett, ‘Poetry is a Way of Being in the World That Wasn’t Made for Us’[1]

Sam Petersen’s contribution to Overlapping Magisteria is a rebellion, a reclamation, a collision of worlds, and a vision of possible futures. It is also an exploration of body language, physicality, and of communication through touch. Like poetry, art is a language; a form of expression that transcends normative speech and speaks directly to the heart.

Petersen’s installation is sensual and fierce, evoking intimacy, yearning, rejection and resistance. In ACCA’s slick steel-walled foyer, tender pink plasticine enters through cracks and faults, filling the gaps and changing the nature of the space. The imposing urban architecture has its edges forcibly softened and made strange. Technology turns biomorphic, organic. The building, like the disabled body, becomes a cyborg amalgamation, its meanings altered and repurposed. As Jillian Weise notes, the metaphor of the cyborg has become so far removed from its literal manifestations that it has become a figure of science fiction rather than disability.[2] Petersen retains a sense of both.

The conflict between the organic and inorganic is one of many conscious ambiguities. Androgynous forms move through liminal territories and subvert binary entry points, destroying and recreating the site – or as Petersen puts it, quite literally ‘fucking the building’. The plasticine marked with fingerprints is simultaneously alien and intensely personal. Petersen is absent but present in all the spaces beneath and between, invisible and hypervisible. Plasticine, Petersen says, is ‘a great recorder of touch, and then that touch could be put on other things’.

Touch and physicality are central to this work, conveying passion and anathema, otherworldly visions infused with weird and beautiful eroticism. There are many tensions here, between the interior and exterior, between the self and the other. Petersen interrupts and disrupts the industrial geometry of the location, and substitutes features of an alluring, unearthly, but oddly anthropomorphic landscape. In a building characterised by its industrial aesthetic, Petersen reiterates that industry is not impersonal but the product of human labour, and reasserts the presence of disabled workers within a structure we are rarely considered to belong to.

The alterations are irreverent, even brazen, but not without seriousness; a sense of encroaching inevitability remains surging beneath the surface. Disabled art pours through the crevices of the Corten steel cladding with a kind of gentle inexorability. The fluidity of the shapes gives them the appearance of movement, a patient slowness. Petersen pulls the space into crip time, which Alison Kafer calls a ‘reorientation’; it is ‘flex time not just expanded but exploded; it requires re-imagining our notions of what can and should happen in time, or recognising how expectations of ‘how long things take’ are based on very particular minds and bodies … rather than bend disabled bodies and minds to meet the clock, crip time bends the clock to meet disabled bodies and minds’.[3]

The dissonant speeds and structures of crip time have perhaps never been more apparent than in the current moment. In a world reshaped by the global pandemic, disabled experiences of social isolation and exclusion are bizarrely universal; for once almost everyone is living on crip time. Petersen’s installation provides a return to abnormalcy, a reminder that the pre-COVID world was already in crisis. There are answers, but not exactly resolutions: Petersen’s response is one of mutation, adaptation, persistence and continuation in the face of obstacles.

Plasticine is an appropriate medium for a piece grappling with the malleability and multiplicity of space. The plasticine’s presence is both an embrace and an invasion. The urban city is a site of exclusion for disabled people, but it is also a site of rapid metamorphosis and expansion, and importantly a site of possibility. As a wheelchair user I often feel that I live in a different world to my bipedal peers. The map of the city I can navigate has different features: every staircase is a dead end, and every tall threshold becomes a wall. Like Sontag’s kingdom of the sick, the world of wheelchair users has porous borders, overlapping with the bipedal world but occupying different space.[4] I long for that other world as much as I resent – and resist – our exclusion from it. (In reply to Sontag, Sinéad Gleeson offers a sobering reminder: ‘the kingdom of the sick is not a democracy’[5]). Petersen’s work offers a possible alternative, intertwining love and longing with rage and defiance. In the world not made for us, Petersen suggests transforming the shape of the world itself.

—

[1] Jennifer Bartlett, ‘Poetry is a Way of Being in the World That Wasn’t Made for Us’, New York Times, 15 August 2018. nytimes.com/2018/08/15/opinion/10-poets-with-disabilities.html.

2 Jillian Weise, ‘Common Cyborg’, Granta online, 24 September 2018, granta.com/common-cyborg/.

3 Alison Kafer, Feminist, Queer, Crip, Indiana University Press, Bloomington, 2013, p. 27.

4 Susan Sontag, Illness as Metaphor, Farrar, Straus & Giroux, New York, 1978.

5 Sinéad Gleeson, ‘Blue Hills and Chalk Bones’, Granta, vol. 135, May 2016, granta.com/blue-hills-chalk-bone/.

Published in Nothing to Hide: Voices of Trans and Gender Diverse Australia, edited by Sam Elkin, Alex Gallagher, Bobuq Sayed and Yves Rees, 2022. This is a found poem from medical reports over several years.

Trans Broken Arm Syndrome

Robin is a 22 year old transgender

who is in the process of managing this

Robin has a history of mood disturbance

She reports mental clouding

gender reassignment

not planning at this stage for bilateral mastectomies

She is not on androgen therapy

There is no family history

There is no family

I note the recent biochemistry

For her hyperparathyroidism there are a number of interacting factors

and sunlight exposure

weight loss

.

Robin was born following a full term pregnancy

She bruises easily

She has had problems with joint dislocation      soft tissue injury

tachycardia      hypoxia      hypoventilation     

required brief endotracheal intubation

She wears glasses for shortsightedness

Head circumference was normal

She has normal facial features

neurological deterioration      weakness and pain

always fatigued

regular cardiac surveillance

This is to be further investigated

Her mood was jovial

She suffers

.

Robin has identified overtly as genderqueer

This has included a formal name change to Robin

preference for use of the ‘they’ pronoun

interesting developmental history

Hedonic capacity and energy levels remain variable

Robin presented as of small compact build dressed in blue jeans,

a tee shirt with words ‘the Revolution and etc.’

They wore earrings and glasses and had a clear, pale complexion

Their blue dyed hair was cut fashionably,

and a floral tattoo was visible on their arm

Affect was animated and enthusiastic,

with good eye contact and articulate speech

Thought form was well integrated

with a highly developed reflective capacity

earlier traumatic experiences

Whilst not questioning Robin’s identification as innately androgynous

I do wonder

.

In relation to your gender neutral status

we are unable to change this on the system

.

She has a number of issues to sort out

I suspect that her brain chemistry is complex

significance of this is not clear

At a medical level she has unresolved      symptoms

her blood tests reveal

she has ongoing investigations

I am checking

I am hoping

I am happy

Time will tell

.

whole body pain and diffuse dislocations in joints

congenital defect of the aortic valve of the heart

abnormality of the ascending aorta

require corrective surgery

There is also a history

Robin has had to suffer

.

Robin’s presentation is so apparently complex and so undocumented

I found it very difficult to make headway with her case

I found it very difficult during our consultation

Robin presented with her partner ­_______

who is also known to some of the doctors at my practice

currently we believe transitioning from male to female

provided a supportive presence      often whispering

occasionally inaudible

I had no further information about this

.

She has been labelled I think

She says

she claims

She also has a diagnosis

She claims also a history

when pressed by my surprise      at such a young age

she said there were also ‘gender issues’

she has normal female genitalia

she describes her lungs as ‘more or less functioning’

she is due to have a cardiac MRI but the indication for this is unclear

I had nothing today to corroborate any of this history

she was really unable to give me a reasonable rationale

She is clearly suffering and distressed

unclear to me what problems are organic      functional

This is complicated by having a large number of doctors

On examination she was very unusually

but neatly dressed, had many visible tattoos,

was softly spoken and polite but as mentioned

her conversation was full of      medical jargon

Somewhat reluctantly I am organising an MRI and MR angiogram

.

Clinical notes: Not provided

deficiency noted

persistently unexplained

in excess      exceeded normal

elevation suggests possible sarcoidosis

aplastic      mild opacification

Tests pending

recurrent infections      blood transfusion reactions

other immunodeficiencies may be associated

Suggest testing

Recommend measurement

for screening at risk individuals

subject to the following conditions

.

The patient tolerated the procedure well

.

The primary site of pain is really the whole body

Robyn was extremely cooperative

This must be extremely tiring for her

Her quality of life is now markedly reduced

she has accepted the fact that her lifespan may be markedly reduced

.

This diagnosis has a severe negative impact on her functional capacity

includes but is not limited to ligaments

tendons, intestines, brain and cognitive function

heart, blood vessels and other internal organs

recurring joint injuries

can only be managed      with no cure

.

The best Robin can hope for is to manage

prevent deterioration of her musculoskeletal system

loss of independence

to meet the specific stability requirements of the upper cervical spine

It is the gold standard      to keep the body as strong as possible

.

Robin has been given a significant, permanent diagnosis

The implications      are many and complex

.

It is always a joy to see Robin

Robin often pushes through to the point of exhaustion

They have been excellent with communication around their disability

to pursue a happy and fulfilling life

We still face consistent challenges

structural instabilities      systemic dysfunction

.

values      should be interpreted with caution

Published in Australian Poetry Journal, vol. 9.2, DIS─, January 2020. The latter poem was shortlisted for the 2018 Judith Wright Poetry Prize. You can buy the issue here.

ORACLE

I have perfected a certain busied appearance

mien of semi-urgent somewhere-to-be

wheeling too swiftly for strangers to stop and ask

What’s                  wrong            with you     ?

or perhaps            What       happened   (to you)

(to your legs)(to make you different)   ?      or

Why           (the chair)(your legs)(are you here)

(are you like this)(are you alive)     ?      ?      ?

Each question pierces something deep inside me,

leaves me cradling a wound that I try to hide

for fear of being further exposed, of showing

weakness before a predator whose hunger for

justification won’t be slaked with my discomfort.

Against the slurry of abled inquisition I raise

my own defences: a certain glint in my eye,

a lifting of hackles, a tightness to the corners

of my mouth, and if these fail I have one final

weapon in reserve: a quizzical tilt and question

of my own:             Why             do you ask          ?

All this not from spite but simply because my heart

is already so swollen with various woes that further

distension would make me unable to move at all,

pin me to my bed and prevent me from rousing,

and I love the world and do not want to leave it.

I want to give my heart more room for love

than grief. I want to keep space for warmth

and not that sudden pit of cold that fills my body

at these innocent cruelties. If they want to know,

then let them voice the truth. The madwomen of Delphi

delivered prophecies of nonsense phrases,

inscrutable, opaque. When asked impossible questions

they gave impossible answers.

You have to figure these things out yourself.

THE DISABLED WARRIOR EMERGES FROM DARKNESS

for Margot Beavon-Collin

in Sparta we are dashed against rocks

discarded in Athens drowned in wine-dark

waters of Argos abandoned in Corinth

we are the long-prophesied doom of Thebes

tossed from Olympus but protected

in Kemet where they worship little gods

valued in Babylon beloved by Yehudim

called monstrum in Rome thought portent of

ill fortune foul beasts better slain or caged

in labyrinthine prisons far from the upper air.

in the Rig Veda armoured queens with iron

legs ride into battle like old gods like K’awiil

of lightning & sacrifice whose leg was

a serpent like Tezcatlipoca of the night wind

whose foot was replaced with obsidian

like Nuada king of the otherworld whose left

hand was fashioned from flashing silver.

moon-cursed they call us demons or deities

weird creatures suffering early purgatory

wild things possessed by the planet Saturn
fey changelings & children of witches.

these days the cavalry rides on wheelchairs

smashing curb cuts out of concrete with

war cries roaring out in electronic voices

& we are still dying still drowning still

damned & discarded but we are not dead yet

& when we die we die like dying stars

with fierce love & fire our light spilling

forth still visible from distant galaxies

for long centuries after we are gone the fight

continues the fire burns brightly on

provided upon request – from my messy notes for Wollongong Writers Fest. i am resisting the urge to fill out this painfully incomplete list further, because otherwise it will languish in my to-do list indefinitely

i think a lot about Jennifer Bartlett’s contribution to the NYT series on disabled poets… Poetry is a Way of Being in the World That Wasn’t Made for Us (ft. Sheila Black, Daniel Simpson, Kathi Wolfe, Lateef McLeod, Camisha L. Jones, torrin a. greathouse, Kenny Fries, Alison Hedge Coke, and Ellen McGrath Smith).

Vanamali Hermans – On Hospitals, in the most recent issue of Overland

APJ,  vol. 9.2, DIS─.

Beauty is a Verb

Stairs and Whispers

Audre Lorde – Sister Outsider, The Cancer Journals

Lucia Perillo

Ilya Kaminsky – Deaf Republic 

Jim Ferris (author of one of my favourite poems, Poet of Cripples)

Leah Lakshmi Piepzna-Samarasinha – poetry and also Care Work

Eli Clare – Exile and Pride

Khairani Barokka

Kay Ulandlay Barrett

Laura Hershey

Quin Eli 

Jorge Luis Borges (only learnt recently that he had been blind for seven years when he wrote my favourite short story of anything I’ve read, The House of Asterion)

Nancy Mairs – On Being a Cripple 

‘I am a cripple. I choose this word to name me. I choose from among several possibilities, the most common of which are “handicapped” and “disabled.” I made the choice a number of years ago, without thinking, unaware of my motives for doing so. Even now, I’m not sure what those motives are, but I recognize that they are complex and not entirely flattering. People–crippled or not–wince at the word “cripple,” as they do not at “handicapped” or “disabled.” Perhaps I want them to wince. I want them to see me as a tough customer, one to whom the fates /gods /viruses have not been kind, but who can face the brutal truth of her existence squarely. As a cripple, I swagger.’

Bill Peace – Bad Cripple 

Stephen Kuusisto – Planet of the Blind

Jillian Weise – Common Cyborg

Mia Mingus

Frantz Fanon – Wretched of the Earth; Black Skin, White Masks

Susan Sontag – Illness as a Metaphor

Alison Kafer – Feminist, Queer, Crip

Alice Wong’s Disability Visibility Project

Kerima Çevik

On FB: here
Shareable link: here

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

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.