This poem was initially published as a digital zine for Red Dirt Poetry Festival in 2020. The first few pages are attached below. You can read the full zine here and image descriptions here.
GOOD CRIPS GO TO HEAVEN BUT GET STUCK AT THE STAIRWAY after Quin Eli
Be bad, love. Take that bad attitude and forge it into armour. Turn chains into chainmail. Take the rage and rancour and make it plated bronze, brace your joints in bitterness. Blaze apotropaic iron out of acrimony, glare back at staring eyes. Rebel and revolt. Forget that carceral logic, be grassroots, be light and fire. Let your disabled body be fierce and furious, let your disabled mind be ardent and wild. Wrap steel around your heart and let your heart stay soft. The life you have is a life worth living. Be proud, love. Be loud and unashamed. Fold fear into a shield, let all of it reflect away. Don’t look back, don’t dwell in regret. Let yourself seek redemption without the tragic backstory, without justification or explanation, without “what’s wrong with you” or “what happened”. Let it happen. Bite the hand. Demand, don’t ask. If they care, they’ll fight beside you. Piss on pity and inspiration, reject involuntary martyrdom. Be that transgender menace, that lavender threat. Be damned, love. You’re there already. The world is burning. Take hell and make it yours, be hell on wheels. Be monstrous, be the bad example, the bad influence, the bad cripple. Be noncompliant. Speak in your own language. Live fast, live strong. Fight for liberation not assimilation. Remember solidarity, stay strange, keep weird and queer, and always channel anger into action. You are loved and not alone. There is more than this and more to come. Be joyous, my love, be bad.
A new collaborative article in Health and History, the journal of the Australian and New Zealand Society for the History of Medicine. Massive thanks to Effie Karageorgos for pulling this project together.
Robin Eames, Jordan Evans, Samantha Kohl Grey, David T. Roth, Lucinda Stormont-Sainsbury, Effie Karageorgos, ‘Picturing Medical Histories: “Ways of Seeing” the Historical Medical Subject’, Health and History 25, no. 2 (2023): 55–86. Available here or here (open access).
Abstract: The image has been used by medical professionals for centuries to illustrate both usual and unusual processes of the body and mind. Images can expose or conceal medical truths, and in many cases are the only connection that exists between the historian and the frequently silent or silenced patient. In this paper, a group of historians each present and explore various methods of applying ‘ways of seeing ‘ or the ‘clinical gaze’ to a historical image from the medical world. Some images have been used to strategically serve the purposes of authority figures and silence the ill subject. Others reveal previously obscured patient’s voices. All present a perspective on the possibilities for analysing and assessing medical imagery from the past that moves beyond traditional understandings.
My section is titled ‘Dead/Effeminate’, a brief analysis of Edward Moate, institutionalised in Beechworth Asylum in 1884.
Patient record for Edward Moate. PROV, VPRS 7396/P/0001. Beechworth Asylum Case Books 1878-1892. Female casebook no. 2, entry 18, 24 July 1884.
Dead/Effeminate
Robin Eames
In 1884 a man named Edward Moate, living in Bright, Victoria, was arrested on a trespassing charge initiated by his former landlady. Moate was remanded for medical examination, and a day later was rearrested on a lunacy charge. The arresting police officer, Senior Constable Edward Shoebridge, gave a deposition explaining the altered charge: he did not suspect that Moate was mad, but rather ‘was suspicious as to whether Moate was really a man’.[i]
Moate had been working as a personal manservant to a surgeon, Doctor Benjamin Warren, and living in his household. Moate had good relationships with his community, and lived a generally quiet life, despite being well-known in his neighbourhood as ‘Ned the woman’ and ‘Old Biddy’.[ii] Dr. Warren was one of two local doctors who was usually responsible for signing lunacy certificates in Bright. When he died in 1884 after a long illness, Moate was arrested less than a fortnight later. At his lunacy trial, Senior Constable Shoebridge told the court ‘that the belief entertained by him and other residents of Bright and Omeo districts was that Moate was a female’.[iii]
Moate was taken to Beechworth Police Court, examined by two doctors (Dr. Henry Fox and Dr. David Skinner) and ultimately committed to Beechworth Asylum. Sergeant Shoebridge conveyed his doubts about Moate’s gender to the medical superintendent of the asylum, Dr. Deshon, ‘and was shortly afterwards informed that his suspicions were well founded as “Edward” Moate was undoubtedly a woman’.[iv]
Officially Moate’s diagnosis was one of religious mania.[v] After Moate’s story was widely publicised around the colonies, a few articles speculated that grief over Dr. Warren’s death may have been the cause of his insanity, but this was not reflected in the actual medical process. Moate’s lunacy trial, and the notes in his patient record, fixated on his gender transgression as the proof of his insanity.
The image at the focus of this article is taken from Moate’s file in the female casebook of Beechworth Asylum.[vi] In the section of his patient record noting the physical signs and symptoms of lunacy, the only comments included by his treating physician were ‘Sex ? Effeminate’.[vii] Within the visual framing of lunatic asylum records, Moate’s perceived effeminacy became the sole justification for a diagnosis of insanity, and for his subsequent involuntary incarceration. Nancy Rose Marshall notes that in the nineteenth century ‘artists and scientists both invested heavily in the faculty of sight’; the medical gaze, like the scientific gaze, was considered an ‘ostensibly objective form of looking’; of ‘seeing rather than analysing’.[viii] As the object of the medical gaze, patients were reduced to images. Andrew Scull refers to Shakespeare’s characterisation of lunatics as ‘pictures, or mere beasts’, noting that ‘the presumed need to segregate the mad from society’ was partly driven by a desire to make the spectre of madness invisible.[ix] By re-examining the relationship between lunacy records and visual cultures, we can discover new ways of seeing through (and analysing) the archives.
Reportedly Moate’s ‘effeminate appearance’ was also the reason why Shoebridge had arrested him in the first place.[x] Despite this, the Melbourne papers reported that ‘[p]revious to the detection of her sex at the asylum, no suspicion of her singular masquerade appears to have been entertained by anyone’.[xi] Moate’s gender was in fact a matter of common knowledge in his neighbourhood; a Beechworth newspaper noted that he ‘was attired as a man, and had for several years lived as such, but was believed to be a woman’.[xii] The local correspondent for Omeo wrote that:
Her sex amongst the old residents was always a matter of doubt … She was only small, and her strength and endurance for a woman were something wonderful. In fact, she had the reputation of being a very good working man.[xiii]
This sentiment was echoed in the Omeo Chronicle by the local correspondent for Deptford, who was even more sympathetic:
I am very sorry for the misfortune that has fallen on poor “Ned Moate.” In common with others who lived on the Omeo road, I was well acquainted with him or her. Always civil, obliging and goodnatured, very honest and willing, nobody cared to press the question of sex on her, though the truth was more than suspected, it having leaked out on one of the very rare occasions, when she indulged in a glass too much. She bitterly resented any imputation on her manliness, and as she looked as like an old fashioned postboy as possible, and rode and groomed a horse well, she was allowed to have her own way unmolested.[xiv]
Gender transgression in the nineteenth century was frequently managed via vagrancy laws, but it was not unprecedented for it to form the basis of a lunacy charge.[xv] Edward de Lacy Evans, a Bendigo goldminer, had been institutionalised as a lunatic five years earlier, and discharged as cured after being forced to detransition. Indeed Moate was referred to in the papers as ‘another De Lacey [sic] Evans’ and ‘another female man’.[xvi] Moate’s lunacy charge essentially came about for two reasons: firstly because Moate had crossed gender categories in a way that violated colonial gender norms, and secondly because he had lost the protection of his employer. Moate’s strong social connections were possibly why he was arrested as a (potentially curable) lunatic patient, rather than fined or imprisoned as a vagrant, but they were not enough to prolong the tacit acceptance of Moate’s position in his community.
Once Moate became unemployed, unable to pay rent, and was no longer seen to be contributing positively to his community, he was removed via the systems that policed and punished disruptive aberrance. These systems did not render him in terms of aberrant femininity but in terms of aberrant masculinity – that is, effeminacy. According to the logic of the era, an effeminate man was a weak, inferior and unhealthy man. This was the rationale of eugenic theory, which had not yet been clearly defined in Australia but became increasingly popular from the 1890s and throughout the interwar period.[xvii] In 1884 there was already a strong perception that effeminacy was cognate with weakness, mental degeneration, and threats to white Australian futurity.[xviii] The label of effeminacy was apparently applied equally to transmasculine and transfeminine gender-crossers. In 1887, Carrie Swain was charged with vagrancy in Sydney for dressing as a woman, and described in the Evening News as both an ‘effeminate youth’ and ‘a detestable character’ who was ‘in the habit of perambulating the streets and parks after dark’.[xix] Effeminacy was also a euphemism for same-sex male attraction, which may also have been a factor in the concerns surrounding Moate:
[Dr. Warren] was parted from his wife, and it is alleged in Omeo that the “intimacy” between the doctor and his servant was the cause of the separation, the doctor when “in his cups,” having stated his preference for “Old Ned.” Some few months ago, Dr. Warren was heard to say that “to his utter astonishment, he had just found out that ‘Ned’ was a woman.” The neighbours had believed this for years, and it was a common topic of conversation over the whole of the Alpine district, from Myrtleford to Omeo, and the boys there always teazed and twitted “Ned” with being a woman. Thus no surprise is felt at the discovery.[xx]
Moate’s unsanctioned transgression of contemporaneous gender norms was nevertheless allowed to continue for twenty years. This acceptance was both conditional and limited. Unlike his contemporaries Edward de Lacy Evans and Jack Jorgensen, who worked in mining and farming respectively, Moate did not transition into the productive workforce.[xxi] In his twenty years in Omeo and Bright, Moate worked as an assistant to the clerk of courts in Omeo and as a domestic servant to a well-respected physician. Unlike Evans and Jorgensen, Moate’s labour was not considered uniquely masculine to the point of provoking anxiety, but it also lacked the redemptive qualities of producing surplus value for the colonial economy. Moate was presumably protected by the social authority of his employers, rather than by the moral and social value assigned to his employment. When that protection disappeared, Moate was exposed to the judgement of the state.
As someone who had departed from his assigned position in the gendered order, Moate was categorised as an undesirable social deviant.[xxii] He was institutionalised not so much because he was sick, but because he was regarded as sickening to society. Social disorder was therefore rendered as medical disorder in order to remove, contain, and manage the threat of slippage between hierarchical social groups.
Moate refused to provide a female name or any information about his history before arriving in Victoria. With the infamous and recent example of Evans, Moate would have known that the pathway out of the asylum required detransitioning. He refused to take that path; all of his patient records were under the name Edward Moate, and he never became compliant to the satisfaction of the asylum staff. He died in Beechworth Asylum three years after his admission, under the name Edward Moate.
[i] ‘Remarkable Imposture at Beechworth’, The Age (Melbourne), 25 July 1884, 5.
[ii] ‘Our Omeo Letter’, Bairnsdale Advertiser and Tambo and Omeo Chronicle. 31 July 1884, 2.
[iii] ‘Remarkable Case of Deception’, Weekly Times (Melbourne), 2 August 1884, 11.
[iv] ‘Remarkable Imposture at Beechworth’, The Age (Melbourne), 25 July 1884, 5.
[v] Patient record for Edward Moate. PROV, VPRS 7396/P/0001. Beechworth Asylum Case Books 1878-1892. Female casebook no. 2, entry 18, 24 July 1884.
[vi] Patient record for Edward Moate. PROV, VPRS 7396/P/0001. Beechworth Asylum Case Books 1878-1892. Female casebook no. 2, entry 18, 24 July 1884.
[vii] Patient record for Edward Moate. PROV, VPRS 7396/P/0001. Beechworth Asylum Case Books 1878-1892. Female casebook no. 2, entry 18, 24 July 1884.
[viii] Nancy Rose Marshall, ‘Introduction’, Victorian Science and Imagery: Representation and Knowledge in Nineteenth Century Visual Culture (Pittsburgh: University of Pittsburgh Press, 2021), 12.
[ix] William Shakespeare, Hamlet, Act 4 Scene 5, line 82, quoted in Andrew Scull, Madness in Civilisation: A Cultural History of Insanity from the Bible to Freud (London: Thames and Hudson, 2015), 188–190.
[x] ‘A Remarkable Case’, The North Eastern Ensign (Benalla, Victoria), 1 August 1884, 3.
[xi] ‘A Remarkable Case’, Advocate (Melbourne), 26 July 1884, 11.
[xii] ‘Beechworth Police Court’, Ovens and Murray Advertiser, 26 July 1884, 4.
[xiii] ‘Our Omeo Letter’, Bairnsdale Advertiser and Tambo and Omeo Chronicle. 31 July 1884, 2.
[xiv] ‘Our Deptford Letter’, Bairnsdale Advertiser and Tambo and Omeo Chronicle. 5 August 1884, 2.
[xv] Victoria’s Vagrancy Act of 1852 was mostly inherited from British legislation. The colonial laws were vague and flexible enough to be applied mostly at the discretion of the police. See also Suzanne Davies, ‘Vagrancy and the Victorians: The Social Construct of the Vagrant in Melbourne, 1880–1907’, PhD thesis, University of Melbourne, 1990; and Adrien McCrory, ‘Policing Gender Nonconformity in Victoria, 1900–1940’, Provenance: The Journal of Public Record Office Victoria, no. 19 (2021), online. https://prov.vic.gov.au/explore-collection/provenance-journal/provenance-2021/policing-gender-nonconformity-victoria-1900
[xvi] ‘Another De Lacey Evans’, Geelong Advertiser, 28 July 1884, 4; ‘Another Female Man’, Burra Record (South Australia), 1 August 1884, 2.
[xvii] See Diane B. Paul, John Stenhouse and Hamish G. Spencer (eds.), Eugenics at the Edges of Empire: New Zealand, Australia, Canada, and South Africa (Cham: Palgrave |Macmillan, 2018), 21.
[xviii] ‘Are the English Becoming Effeminate?’, Argus (Melbourne), 4 October 1884, 4. The anxiety around degeneracy was certainly not universal, and received pushback as early as it appeared in the 1870s. See ‘“Mozeck” and Human Degeneracy’, Yorke’s Peninsula Advertiser and Miners’ News (South Australia), 30 October 1874, 3.
[xix] ‘A Detestable Character’, Evening News (Sydney), 17 November 1887, 5.
[xx] ‘A Man Impersonator’, The Herald (Melbourne), 25 July 1884, 3.
[xxi] Jorgensen was a German migrant who also lived in the Bendigo district, working as a farmer in Elmore between 1873 and 1893. He was exposed as an ‘impersonator’ after his death, and posthumously appropriated Moate’s title of ‘Another De Lacy Evans’. See ‘A German de Lacy Evans at Elmore: A Female Mounted Rifleman’, Bendigo Independent, 6 September 1893, 3. See also Lucy Chesser, Parting With My Sex: Cross-Dressing, Inversion and Sexuality in Australian Cultural Life (Sydney: Sydney University Press, 2008); Lucy Chesser, ‘Woman in a Suit of Male: Sexuality, Race and the Woman Worker in Male “Disguise”, 1890–1920’, Australian Feminist Studies 23, no. 56 (2008): 175–194.
[xxii] The colonial lunatic asylum was a key structure in the policing and punishment of social deviance, alongside the courts and prison system. See also Alexandra Wallis, ‘The Disorderly Female: Alcohol, Prostitution and Moral Insanity in 19th Century Fremantle’, Journal of Australian Studies, 25 July 2019, online. https://www.tandfonline.com/doi/full/10.1080/14443058.2019.1638815
These two were published recently in Bramble, issue 2, a journal by and for disabled creatives. You can read the issue here.
Vocalisations was written during lockdown.
Song of the Biped was an experimental poem written in the voice of a nondisabled person. I recognise that adopting the voice of a community I don’t belong to is controversial, but I am fascinated by the unique worldview of abled people: their curiosity, their obliviousness, their rigid adherence to convention. Several nondisabled people offered unsolicited consultation for this poem.
VOCALISATIONS
in the dream of evening i am afraid of the not yet everything / of happening too much or not enough / i am lonely covered over with every star concealed by city smog to which i contribute every heartbeat i shall never recover i am trying not to be too obviously crazy in the zoom call & in the streets populated by cop cars & dogwalkers / warned by the neighbourhood whatsapp / i learn birdsongs thru the urban wail of sirens / love & war & calls of alarm / contact & separation / flight / hunger seeking justice or solace / i am trying to be a version of myself i can live with hoping to live past 30 / for the ordinary noise of life restraining expectations in the hope of hope for not yet i give myself to my community to love / struggle / solidarity / to something i give myself to birds to each unlikely dawn
SONG OF THE BIPED
I have a cousin who’s handicapped you know, special needs ??? ??? directionally challenged ??? living with access ???? how’d you end up in that thing? How much does it cost and was it a car accident? Carbon fibre? Did the government pay for it out of my taxes? Do you work? doesn’t seem cost efficient is it permanent or temporary? Are you permanent or temporary? I’d kill myself if I had to live like you – that’s a compliment of course to your resilience. I broke my leg once so I know what it’s like. It must be so hard. Is it hard to get up hills? I just think you’re inspiring just think you’re so brave for continuing to get up in the morning (I wouldn’t) And how do you get that into a car? How do you have sex? How do you get up in the morning? Well I’ll pray for you here I’ll help push you oh it’s no trouble, I like to be useful It’s fine, I think it’s fine I won’t ask permission. I’m helping Mind if I lean my bag on your shoulder? Oh it’s no trouble Hey, where’s your carer? Why are you out here by yourself? That’s not right. It’s so nice to see you out, of course You’re so brave Not like those dole bludgers. Were you born like that? Hey I just want to thank you for being here – I’ve never contemplated my mortality the way I do when I look at you Really makes you think
Last week I turned 30 and held a wheelchair joust. (Note: not historically accurate.)
With thanks to Caoimhe, my opponent, to Reverse Garbage for providing materials, and to Sam and Tess, for documenting the most fun I’ve had in my life.
Two wheelchair users duking it out, armed with cardboard lances and shields painted with gryphon and wyvern crests,
Robin on the offensive
Robin giggling, Caoimhe losing their shit
Robin waiting in the starting position, wearing padded armour and a bike helmet
Caoimhe, a Wiradjuri/Irish/Jewish wheelchair user, looking fierce as hell, holding a cardboard lance and red shield with a gold gryphon crest, in front of a mural of the Aboriginal flag.
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.
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
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.
I wrote this on International Wheelchair Day, which is also the Disability Day of Mourning, March 1. Archived here upon request.
Robin, a white genderqueer wheelchair user with pink hair, smiling sideways at the camera. Photographed by Andrea Francolini, 2022.
My new wheelchair is finally through the manufacturing & import process, fitting appointment on Wednesday.
It’ll be my 3rd chair. 1st was a self funded bucket of junk. 2nd – this one – is a sleek $24k ndis-funded ultralight artwork, that has nevertheless begun to rust and fall apart after 4 years. 3rd is a ndis-funded $31k fine-tuned freedom machine that will hopefully serve me well.
My first wheelchair fitting was in 2015. At the time I was mostly housebound after years of rapidly declining health & mobility, in which I sought care from so many different drs and specialists that I lost count. 6 month waitlists, $550 initial consults, $600 MRIs, being told I was dying, being told I was crazy, being told I was exotic, difficult, “falling into the sick role”, being patient, trying to be a good patient, struggling to keep up with countless appointments and scans and tests trying to figure out what was happening to me. It was exhausting and expensive and soul eroding.
I didn’t want to be sick. I wanted to finish uni and go to parties and make friends and live my life. I wanted to go to the beach, get on a bus, go to the library. It took years of hell to get the answers and diagnostic reports that made me eligible for state supports.
I don’t really miss walking. When I do, it’s usually less about the walking itself and more about missing the ease and simplicity of navigating the world as someone who could walk. I miss being able to go to the pub without calling ahead. I miss dating and making new friends without being seen as a fetish or a spectacle. I miss being able to get through every unlocked door. I miss being treated like a person by everyone I met.
I miss going to house parties, jumping on the bus during rush hour even if it’s busy or the ramp is broken or the bus doesn’t have a ramp, catching a train without having to tell 5 different people and be there 15 mins early, booking tickets to a show at the last minute & trusting I can get in the door, booking a table at a restaurant without worrying about whether I’ll be able to get into the bathroom, doing anything or going anywhere on the spur of the moment without having to map out my routes in advance, catching a flight without risking my freedom at the hands of poorly trained baggage attendants.
I miss not having to manage my health like a full time job on top of my actual work. I miss having the luxury of so many hours in a day. I miss picking up casual work in workplaces that would never employ me now. I miss going places by myself without having to be hypervigilant about well-meaning – or not so well-meaning – strangers grabbing my handles and being unable to stop them.
I don’t miss the way I used to move through the world. What I miss is living in a world that was built for me.
I am grateful, now, to live in the world not built for me. It has radicalised me and taught me difficult lessons. I have learnt what solidarity looks like, about mobilising, about organising, about loving each other and living for each other.
More than anything I’m grateful to be back in the world at all, and not stuck at home in bed.
I love my wheels because they gave me my life back.
My new wheelchair, a sexy Tilite TR in acid green metallic, with gel cushions, better back support, and jacked up suspension.
With thanks to Kerima Çevik who asked for a shareable version, and to Bill Peace, whose writing I think of often; this post and this one are of particular relevance here. RIP to a real one.
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
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)
‘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.’
![Blaze apotropaic iron
out of acrimony, glare back at staring eyes.
Rebel and revolt.
[image: a hand passing through flame; an x-ray of Robin’s cervical spine in flexion and extension, where their lip piercing is visible]](https://robinmeames.files.wordpress.com/2024/03/good-crips_03.png?w=724)
![Forget that carceral logic,
be grassroots, be light and fire.
[image: close-up of poppies; film photo of orange and yellow nemesia flowers]](https://robinmeames.files.wordpress.com/2024/03/good-crips_04.png?w=724)
![Let your disabled body
be fierce and furious, let your disabled mind
be ardent and wild.
[image: Robin wearing a colourful dress doing a wheelie in front of a graffiti-covered wall; a long exposure shot of a rainbow hoop, with colourful streams of light flaring out around a vague figure]](https://robinmeames.files.wordpress.com/2024/03/good-crips_05.png?w=724)
![Wrap steel around your heart
and let your heart stay soft. The life you have
is a life worth living.
[image: vibrantly coloured cardiac echoes of Robin’s wonky heart; eucalypts at dusk]](https://robinmeames.files.wordpress.com/2024/03/good-crips_06.png?w=724)
Robin M. Eames 