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 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 peoples, 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.

THERE ARE ONLY 16 GENDERS

I have a very serious (read: prodigiously silly) gender poem out in Cordite‘s TRANSQUEER issue. You can read it here.

Do check out the rest of the issue if you have the chance – there are some beautiful poems in there, especially from the late and great Candy Royalle.

Ramsay, dogwhistles, and the “West”

I studied a Bachelor of Arts at the University of Sydney. I graduate next week with first class Honours in History. I’d like to share some thoughts on the Ramsay Centre and their proposed “Bachelor of Arts in Western Civilisation”.

The Australian claims that “Western civilisation [is] a lost cause at public universities”.

Pockets of excellence remain in the humanities in public universities but overall they are on an ideological path of narrowness and anti-intellectualism, and they are getting worse. Their university administrations will certainly never reform them…

[T]he Ramsay Centre for Western Civilisation… had offered huge donations to set up a degree based on the great books.

Such courses are common in the US. But in Australia only the small Campion College runs such a great-books-based program to an accredited degree level.

Campion College is a Catholic liberal arts college in Sydney, whose goal is “to nurture future students in the liberal arts who will, by the quality of their education and the maturity of their religious faith, be able to live out a mission of leadership and service to society and the Church”. They are, they say, “independent” but “faithfully aligned to the teachings of the Catholic Church”.

Campion runs an annual essay competition to attempt to seduce enrolments out of high school students; in 2010 I won the first of these. I’m not sure I was what they were expecting. I was 17, very small, very energetic, and ragingly queer. They tried to sell the school to me regardless. Bless their socks, but I was desperately uncomfortable. It was all very white and very straight. I don’t think I met a single staff member who wasn’t an elderly white man. It felt like they were pushing an agenda while trying very hard to look like they were not pushing an agenda. The essay competition was attached to a monetary prize; you’d best believe I took the money and ran.

I wanted to study literature and history, but the kind of curriculum that Campion College offered was oddly narrow in a way that is difficult to articulate. They were interested in a particular kind of literature; a particular version of history. It felt sheltered.

All of this said, the curriculum at the University of Sydney wasn’t actually much better than what was offered by Campion College. I was most interested in ancient history and mythology, but the only areas covered by USyd’s Ancient History units were Greece and Rome. There was nothing on ancient Mesopotamia or the Near East, nothing on ancient Egypt, Africa, China, Japan, India, or Mesoamerica. Some of the earliest written texts on this planet are from Ancient Sumer, but there was no opportunity to study Enheduanna (who praised the god Inanna for her ability to turn women into men and vice versa), or to study the Sumerian creation myth that explicitly includes intersex and disabled people. The oldest piece of epic literature is the Epic of Gilgamesh, which I did study very briefly in a subject called “Greek and Roman Myth”, but there were no units of study dedicated wholly to any culture outside of Greece and Rome. There was nothing on ancient Aboriginal and Torres Strait Islander cultures, though they have the oldest continuous cultures in the world. In 2012, the year I began my undergraduate degree, the Koori Centre was defunded and shut down.

When conservatives speak about “the West”, about “Western civilisation” and “tradition”, about “the classics”, about “values” and “culture”, it is all very sharply coded. It sounds good on the surface; why shouldn’t we nurture art and the humanities? Well, alright, but let’s remember why they’re suffering in the first place: the Liberal government has announced plans to cut $2.2 billion in funding from universities. So let’s allow ourselves to be suspicious of their motives for a moment. Let’s ask why they might couch seemingly-innocuous phrases in alarmist rhetoric about falling civilisations and futurity.

Let’s consider the Ramsay Centre in the context of Pauline Hanson moving a motion in the Senate saying “it’s okay to be white”. The phrase is borrowed from white supremacist organisations. It is designed to seem innocuous, to act as a dogwhistle, only capable of being heard by its target audience. It is supposed to be irrefutable: if you recognise the white supremacist baggage attached to the phrase and try to reject it, then you’re proving their point.

The “West” itself is a nebulous concept. It includes Greece and Rome, but not Carthage or Egypt; it includes Jerusalem, but not Uruk. Even the Ramsay Centre doesn’t feel the need to define exactly what they mean by Western civilisation. Their proposed curriculum is startlingly unambitious. Homer, Sappho, Plato, Aristotle, Chaucer, Shakespeare: it looks exactly like the contents of my undergraduate degree. Still no Gilgamesh or Enheduanna, though much of Graeco-Roman myth and culture is inherited from Sumer and Mesopotamia. (Compare the descent of Inanna with the myth of Persephone.) And nothing in languages other than English, though most of the named foundational texts were written in Greek, Latin, Hebrew, Aramaic, Italian, French, Spanish, and German. The West, whatever it is, is apparently strictly Anglophonic.

None of the content of the proposed course is particularly neglected by the existing University of Sydney curriculum. These are the current core units of study for Ancient History at USyd:

Screen Shot 2018-10-31 at 7.41.55 pm

What, then, is so at risk of neglect or decline? What exactly is at stake here? Yes, all of these are worthy of study, but are they the only areas worthy of study? I can’t say that I can characterise much of my undergraduate education as especially leftist or radical; if the university is producing radical leftists then it is certainly not by design.

Returning to the piece in the Australian, Greg Sheridan places Christianity at the heart of the “West”.

The West, uniquely, developed experimental science because of its theological views of nature. God was sacred and nature was natural. Nature didn’t embody warring or capricious demons. It was good, as Genesis had proclaimed. And it embodied order, as a reflection of divine order. The desire to discover the secrets of that order led to experimental science.

By their own timeline it doesn’t make much sense. Christianity began in the first century BCE; the civilisation of Ancient Greece is generally regarded as emerging in the eighth century BCE and ending in the second century BCE, when it was invaded by Ancient Rome. If Christianity is at the heart of the West, then the West cannot include Ancient Greece, and yet it does. The Ancient Greeks thought that the origin of the world began with night and chaos, and their gods were not holy and righteous but petty and selfish. Nature was random and strange, full of whirling possibilities. If there was a perfect order, it was in the vastness of everything, the huge beauty of the unknown, all of it working in weird harmony.

Proponents of the Ramsay Centre seem to think that everything admirable about the classics is at risk of being spoiled by feminism and “cultural Marxism”. How boring, to point out cultural metanarratives of inequity. How frustrating and facile, to project bigotry across these great works of brilliant men, to bring sexism and racism into it (since, of course, they mustn’t have been there already).

And yet if we are to invoke people like Aristotle and Plato as the grand forefathers of Western civilisation, if we are speaking about nature and order, then we must come to grips with what that means. Aristotle believed that slavery itself was natural; that women were naturally inferior to men; that disabled infants should be murdered at birth. Plato, too, thought that certain inequities were natural.

In my undergraduate study we never examined Plato or Aristotle especially deeply for sexism or ableism; they are simply inescapably those things already. As a disabled person it is impossible to read Aristotle and feel comfortable with his asserting “let there be a law that no deformed child shall live”. And it is not only these older texts that should be subjected to a critical lens. Marx, too, is painfully racist and ableist: as a disabled person it is impossible to read Marx and feel comfortable with his references to “crippled monstrosities”. This doesn’t mean that we should abandon the lot of them, but we should at least take their grand truths with a grain of salt.

Of course none of this was ever touched upon in my classes. If feminism has ruined university education then it has done a very half-hearted job of it. A while ago I took a European Studies class where one of the prescribed texts was The Marquise of O, after which the tutorial avidly discussed whether a violent gangrape was really rape if she fell in love with him afterwards. The text after that was The Sorrows of Young Werther – a book which gives its name to the “Werther effect”, referring to copycat suicides, since its publication induced a spate of them. No content warnings, of course, and no option to skip those texts – hah! Snowflakes! Etc.

Are we neglecting the history and literature of Western civilisation? Well, no, not really. In fact I think we could comfortably neglect it a little more, and benefit from it.

 

 

 

 

 

 

 

RESISTANCE AND HOPE

DVP-cover-1600x2560

Illustration by artist Micah Bazant featuring a midnight blue sky with little white stars. Below is a log with mushrooms growing out of it in multiple shapes and colors. “Text reads: Resistance & Hope, Essays by Disabled People, Crip Wisdom for the People, Edited by Alice Wong, Disability Visibility Project.” The ‘o’ in ‘Hope’ looks like a full moon.

I am very excited to finally share Resistance and Hope, an anthology of essays by disabled writers and activists. The anthology is available to read here for free online.

I was very honoured to work as an editorial assistant (and herder of cats) for Alice Wong, the editor of the anthology.

Resistance and Hope is comprised of 16 essays by 17 multiply marginalised disabled people. Contributors include writer and advocate Vilissa Thompson on the audacity of hope as a Black woman; LGBQT advocate Victoria Rodriguéz-Roldán on respectability politics; attorney and activist Shain Neumeier on trauma and survival; ADAPT legend Anita Cameron on the importance of holding hope in darkness; activist Stacey Milbern on caregiving collectives and Medicaid cuts; artists DJ Kuttin Kandiand Leroy Moore on hip hop and disability liberation; writer and artist Naomi Ortiz on self-care and growth; fearless agent of change Talila A. “TL” Lewis on resistance and revolutionary madness; writer and poet Aleksei Valentín on Judaism and disability solidarity; essayist and poet Cyree Jarelle Johnson on autism in a time of resistance; activist and poet Lev Mirov on death, grieving, and survival; autistic advocate and organiser Lydia X.Z. Brown on praxis, accountability, and intracommunity abuse; writer Mari Kurisato on colonial violence and visibility; comic Maysoon Zayid on the strategic fight for our rights in the Trump era; community organiser Mia Mingus on transformative justice and building alternatives to violence; and artist and writer Noemi Martinez on survival and multiple marginalisations.

This is crip wisdom for the people.

REQUIEM FOR MEDUSA

New poem out in Hermes, REQUIEM FOR MEDUSA, and a recording of me reading it. This poem was the judges’ choice winner in the “word” category of the USU Creative Awards. If you swing by Verge Gallery in the next week or so, you can pick up a free copy of the edition.

 

REQUIEM FOR MEDUSA

He does not look directly at you,
your murderer, fearful that one
unprotected glance at your body
will strike him down. When the
sword falls upon your long neck
his gaze is turned aside a little as
if from shyness, tinged perhaps
with disgust at the monstrosity
of your form, or shame, not for
himself but for the anathema of
your existence, looking only at
your reflection. You do not give
him the same discourtesy. Your
alien eyes, gold and slit-pupilled,
are fixed on him the entire time
you are dying. The shape of him
young, lithe, feet planted firmly,
all leather and bronze, one long
red line of blood interrupted by
splashes of your own blue-black
ichor. Mirrored shield held aloft
like Atlas burdened with the disc
of the heavens. He dims as your
vision falters, brilliance dulling,
blur of blood and light and dark,
the shadows deepening as your
own shade departs the cave, not
for the cold hell of Tartaros but
for the rivers of the dark-haired
god who accepts all equally and
whose kingship over everything
under the earth extends already
to you and your serpentine kin.
Behind you in the mortal realm
the husk of your corpse turns to
ash as he seizes your skull by its
hissing roots, affixing your head
to his burnished shield, his own
reflection fixed forever in your
nacreous pupils, the gilded killer
entombed, ill omen to future foe.