“Staring at the Other” and “Unsettled Inhabitations”

I’m almost a Doctor. Of Philosophy, of course. Specifically, since doctorates are always severely specific, a doctor of poetry and bodily otherness. In the process of getting there, I’ve had two essays published.

The first was “Unsettled Inhabitations: Bodily Difference in Poetry”. This is a chapter in “Inhabitation: Creative Writing with Critical Theory”, edited by Dominique Hecq and Julian Novitz. My chapter was first delivered as a paper at the 20th annual conference of the Australasian Association of Writing Programs in 2015, and it scrutinises major modern and contemporary essays on poetry by poets – T.S. Eliot, Robert Frost, Charles Olson and Adrienne Rich – and finds that the body is often ignored or downplayed, yet always affirms itself through difference. I then propose a kind of “Disability Poetics”, adapted from writing by Tobin Siebers and by Mitchell & Snyder, and do a close (bodily) reading of a few of my own poems from “Music our bodies can’t hold”.

inhabitation cover

Second, the Canadian academic journal Critical Disability Discourses has published “Staring at the Other: Seeing Defects in Recent Australian Poems”. This is an expanded version of the third chapter of my PhD exegesis, “Disabling Poetics: Bodily Otherness and the Saying of Poetry”. The essay looks at poems by Cate Kennedy, Hazel Smith, Kit Kavanagh-Ryan, and Peter Boyle, all of which focus on encounters with disabled or physically-other people. I take an approach inspired by Emmanuel Levinas to suggest that the Other, to varying degrees in each poem, stares back.

What will happen to the other chapters of my PhD, and the poetry manuscript that was also part of the thesis, I’m not yet sure. Hopefully publication in some form, at some time. But right now is a time for recovery, recuperation, letting time do its work.

Poetry Season – an online workshop coming soon

A few days ago, I announced this on Facebook (aka Farcebook / defacebook), but of course not everyone is on social media, so I thought it best to let you know here. This summer, I’ll be running an online poetry workshop – Poetry Season!

Each week, for six weeks, I’ll send out a short essay, which will include a writing exercise (and a few examples). Participants will then write a new poem of their own, which will be distributed to the whole group. I’ll provide feedback on each of your poems (and everyone else will be encouraged to, too). So, at the end, you’ll have six draft (or maybe even completed) poems.

The workshop will cover place and season, self and other, body and poetic form. I want to give you opportunities to try some things you haven’t tried before, to engage in some serious play, to dive deeper into your own developing aesthetic. So, it’s for everyone who writes poetry and wants to refresh their practice – emerging, developing or established (as shaky as those categories are).

I’m still sorting out the exact details and pricing, but it’s likely to run from mid January to end February 2019, with a maximum of 10 participants (although there may be two groups), with concession for unwaged.

If you’re interested, and you haven’t already let me know, please do so asap, and I’ll make sure you get a chance to participate. It’s first in, best (poetically) dressed. If you miss out this time, I’m planning to run another Poetry Season in the future….

PS The other news is that this blog will soon be a website….

kindergarten AJ001
1975 – poet at work, pre-internet

(Auto)biographical poems and the pencil to the head

In many circles, confessional poetry is considered passe. Embarrassingly naive – how could the poet think there was some straightforward connection between themselves and the poem? Don’t they realise the author is dead? At the other end of an assumed spectrum is are all kinds of impersonal experimentation of language and form (as if these poets were not also, inadvertently, confessional).

If you do write what people might think of as confessional poetry, then the least you can do is grow out of it. The young, supposedly, are self-absorbed, but their worlds expand as time passes. A poet ought to mature, leave themselves behind. This, of course, assumes that you have a stable, recognisable, culturally-accepted self, which can be cast off (or deconstructed) at will. It’s not that simple for disabled people – or anyone whose body is devalued. And aesthetics isn’t that simple, either.

I’ve been writing poetry for about twenty years now. In one sense, sure, I started from the point of view of my own body. And I’ve increasingly become interested in other lives, what might be called documentary or non-fiction poetry. But, of course, there’s always more than meets the eye.

My latest poetry collection is Music Our Bodies Can’t Hold (Hunter Publishers 2017). Each of these poems is a portrait of someone else with Marfan Syndrome – historical figures speculated to have had this genetic condition, such as Abraham Lincoln, Akhenaten, Mary Queen of Scots; actors, sportspeople, composers, musicians, such as Bradford Cox, Flo Hyman, Isaiah Austin, Peter Mayhew; and a slew of people I interviewed and/or researched.

One the one hand, these poems are experiments in voice and shape. Each one is different in the texture and tenor of their language, and in how they physically appear on the page – as thin, elongated and exposed; as vociferously assertive and blunt; as awkward, asymmetrical and broken. United only by genetics, they speak in a huge diversity of voices. Voices that are not mine.

And, yet, on the other hand, they are all confessional. Within each one, there is a fuel, an engine, whatever the right metaphor is – I had to find a way into each person, a resonance of affinity or empathy. A method-actor’s poetics, I guess, though it seems to me now to cut both ways. Because, while I do feel I have given them voice, they have also given me voice(s).


In her book “Visceral Poetics”, Eleni Stecopoulos recounts how Antonin Artaud, while drawing portraits, would press “his pencil point into the part of his head that corresponded to the part of the sitter’s head that he was betraying… no objectifying gaze, but a literal act of empathy… [which] does not mean comprehension: it means visceral sensibility of a perceived connection”.

Something like this happened while I wrote the poems for “Music Our Bodies Can’t Hold”. I found myself instinctively pressing the pencil, so to speak, into parts of me. Fatigue and pain. Self-consciousness. The paradox of being recognised and unknown. Grief. Ambivalence. Defiance. The surprise of being loved.


Three of these poems were recently published at Rochford Street Review.  A mini-launch happened as part of the Queensland Poetry Festival recently, at which the brilliant writer and editor Heather Taylor Johnson spoke very generously. And very soon, the book will be launched in Melbourne – Saturday 9th December, 2pm, at Collected Works Bookshop at the Nicholas Building (Level 1, 37 Swanston St) – details here. I’d love to see you there. The book is published by Hunter Publishers, so any bookshop will get it in for you.



Writing disability – incomplete and important

Something very interesting is happening at the moment in Australian literature. Disability is beginning to be given space to express itself. And not as inspirational or tragic, but in its complexity and diversity. There is a tremendous history, of course, to writing by disabled people in Australia, but this feels like a new wave of sorts. A beginning, and incomplete, but significant nonetheless.

Later this year, a landmark anthology of poetry (with accompanying essays by the poets themselves) will be published by UWAP. Shaping the Fractured Self, edited by Heather Taylor-Johnson, features the writing of 28 poets, many established, many emerging, from within the experience of chronic illness, pain and disability. It’s akin to the landmark anthology Beauty is a Verb, though with its own particular field. It takes trauma and experience head on, showing how poetry expands our sense of community and beauty.

And recently, major literary journal Southerly published Writing Disability (issue 76.2). I co-edited the issue with David Brooks. It features some breathtaking and intriguing poetry by Peter Boyle, Quinn Eades, David Stavanger, BR Dionysius, Shari Kocher, Kit Kavanagh-Ryan, Anne Elvey and many others; provocative and insightful essays on Henry Lawson’s deafness, the linguistic and personal meanings of vulvodynia, mental illness and marginality, autism and collaborative writing; as well as fiction that ranges from the unsettling to the humane. I’m proud of what we selected, while aware there is so much more out there. I encourage you to buy a copy, and while you’re waiting peruse the Long Paddock, the online section of the issue.

I should also say that the artwork for the cover is by Fulli Andrinopolous. Rather than select an image that illustrated or represented disability (a questionable aim, it seems to me), we really wanted instead to give an opportunity to a disabled artist whose work explores form and colour in a more abstract yet still intensely personal mode. Disability is not only a topic, but a way of seeing.

What follows is a brief excerpt from the essay “Ramps and the Stair”, by myself and David Brooks.


Framing this issue of Southerly as “Disability” is a curious constraint—how do we as editors decide what does and doesn’t fit into the theme? What is “disabled writing”? Is it simply any writing by a disabled person? Or, could the disability be within the writing itself, regardless of the bodily status of the writer—language that inhabits its own peculiar limitations?

Surveying the contemporary literary scene, it would seem that disability exists only either as topic or as identity. Someone writes a short story featuring a character who is in a wheelchair, or has autism, depression, an unnamed degenerative condition. Usually, the character appears to symbolise human vulnerability, or they overcome their impairment with courage or acceptance. Or, someone writes an essay—about the National Disability Insurance Scheme, or the media’s misrepresentation of disabled people, etc—attaining credibility as a writer either because they themselves are disabled or they work in the “industry”.

But writing is not only the subject and the author, but its mode, style, aesthetics—its form. And what is disability but a question of form, which forms are considered appropriate to the world as it is organised now? It would take a much longer essay, many volumes probably, to properly unravel the connections between disability and literary form. It’s an undertheorised area, for many reasons. Not least of which is the ambivalence writers and academics have towards admitting to any “lack” of ability or competence. Deconstruction happens to texts, not bodies, certainly not ours. But aren’t bodies also texts? And aren’t texts also bodies?

As I was reading submissions to this issue, I wanted to know who was doing the writing, where they were coming from. I felt, intuitively, that subjectivity matters. I wanted ‘“disabled writing”. What I found was a lot of writing by the parents, siblings, friends and carers of disabled people. If I read attentively, I was reminded that, while we think of pain as inherently isolating and individualising, disability isn’t quite like that. There is a leakiness to it. Something disabling overflows into the lives of those close to me.

Perhaps the poems, stories, memoir and essays here leak into each other. To quote or paraphrase: a mother locks herself in the pantry while her child screams inconsolably. A revolving door of psychiatrists. Sounds from words I’ve never spoken, but should have. How being marked speaks to wounding and to creativity. Max is a master of sound and rhythm more so than I. Learning to hate the word ‘“proud”. The inertia of overladen assumptions see how these structures melt. The twists and kinks of the paper were his mnemonic. Each piece of writing speaks for itself, and the connections speak. There is also writing here that wasn’t submitted specifically to the theme, but these also belong.

Some submissions were rejected for the way they perpetuated the clichéd figures of the unfortunate victim, or the victorious super-crip, a mode of characterisation which Stella Young called “inspiration porn”. Or, worse, where a disabled person appeared as an object, without agency or subjectivity.

Other submissions just didn’t even reach us. Some writers experience such isolation or suffering that the economic and psychological space required for writing just isn’t accessible to them. Other writers produce immensely interesting work that is hard to place in a literary journal. Still others don’t have language, at least not in the way you or I might think of it.

In The Biopolitics of Disability, David Mitchell writes, ‘“as a politics of atypicality, disability can be most productively understood as an identity based on incoherence… a fortunate dishevelment of normative coherency” (98). So, it should be no surprise if this collection of writing doesn’t quite seem to cohere. It’s incomplete, unwieldy, flawed; perhaps it even contradicts itself. You could say the same, perhaps, of this editorial essay. This is not a tragic accident or a heroic achievement. It’s how language comes out of our bodies.



Open poet

For those of you who live in Melbourne, or nearby, I’ll be at RMIT from Monday 27th to Wednesday 28th of March. On Tuesday 28th, I’ll be opening the literal and metaphorical doors – drop in any time between 1pm and 4pm for a chat (and possibly to have your words incorporated into new poems in the making), and/or come along to the poetry reading at 6pm. Details below…!


Each Map of Scars

each-map-of-scarsA few years ago, I collaborated with Rachael Wenona Guy on a puppetry-poetry performance called “Ambiguous Mirrors”, which explored genetics, family resemblances and secrets, and loss. This new show – featuring also Leonie Van Eyk and Rose Turtle Ertler – includes “Ambiguous Mirrors”, plus two more, “Secessionist” and “Unfinished”. It explores bodily difference from the inside, and from your perspective, through stop-motion animation, puppetry, film, photography, live performance and sound.

And the premiere is at the Castlemaine State Festival on March 18 and 19 (2017)!

Speaking personally, it’s been exhilarating to see my poems amplified and concentrated in such a visceral way by these talented collaborators. So I’d love to see you there. Tickets (of course) are selling fast. If you you want to enquire about the possibility of booking the show for a festival or event, just let me know.

A preview of the show is here at Vimeo.

(Not) hating poetry

So, I’ve survived the first year of my PhD on poetry. One of the risks of academia, they say (whoever they are), is a kind of creativity-crushing self-consciousness, knowing too much for your own good. Also, doing what you love as a job, or as the primary focus of your life, can sometimes bring you closer to love-hate. I’ll admit, at times, the fact of the PhD – not only knowing that there is a community of thinkers and writers surrounding me virtually, but the high expectations I have of myself – has been intimidating.

This is the flip side of the sense of feeling lucky or privileged. I’ve been given such a rare opportunity – to spend a few years reading, thinking and writing in an area I’m deeply passionate about, and in a genre that’s infamous for being obscure, the antithesis of popular or useful. It’s like an extended arts grant or residency, but with institutional support (and administrative hurdles). I want my efforts to bear fruit, so I strain, push, ruminate, argue with myself (do fruit trees do this?).

Almost all my reading has been directly related to my topic – bodily otherness in poetry, using Emmanuel Levinas and Disability Theory as philosophical guides – but I’ve also been reading a little more broadly. Which brings me to The Hatred of Poetry.


I read a fascinating essay by Ben Lerner recently, which was the core of this short book of his. He begins from the classic Marianne Moore poem called “Poetry” (which I’ll quote below) to argue that poems are inevitably unsatisfactory – they all fail – which is precisely the reason we are drawn to them.

I, too, dislike it.
***Reading it, however, with a perfect contempt for it, one discovers in
***it, after all, a place for the genuine.

It’s a much more complex and nuanced argument than that, of course, and there have been many very interesting and insightful reviews of the book – for example, in Cordite Poetry Review, The New York Times , and The Conversation, among many others – which I won’t even pretend to compete with.

I think Lerner is onto something with this book. He captures something about the transcendent frustration (or frustrating transcendence?) of poems. But I think its flaw is that he mis-identifies the “genuine”. It seems Lerner’s argument is that the problem is not poetry per-se, but poems. In other words, he takes Moore as saying that if we read poems with a kind of contempt, we will find the genuine poem, or poetry. Instead, I interpret her “genuine” as something more like “reality”.

When I am writing a poem, I am maneuvering through a dim landscape, an uncannily familiar yet definitely unmapped terrain which is psychological, political, linguistic and bodily all at once. I’m trying to capture something, or at least point to it. What I invariably find is that I fail to capture or point. But the poem does something. And the best ones, the ones I’m happiest with, seem somehow to include the failure to capture, include it within their structure, underneath the lines, almost subliminally.

The poems I’m most drawn to, the ones that bear re-reading, dwelling within, tell me something about life, embodiment and the spaces between us – but they tell me this by the way they renew my desire for the actual world. They succeed by failing.

I’m very much drawn to the idea of poetry as embodying failure, but not quite in the sense that Lerner seems to intend it. Our bodies fail – they break down, certainly, but they also live through processes of decay and transformation, and we move through the world by turning whatever brokenness we carry to our own ends.

Has my PhD been a success so far? Well, I’ve leapt all the technical hurdles so far. I’ll be presenting a version of the first chapter of my exegesis at the Australian Society for Continental Philosophy’s annual conference. One of the poems I’ve written received third prize in the inaugural Health Poetry Prize through the University of Canberra. Another was published in the new literary journal, Deaf Poets Society. And I’m writing poems I didn’t expect to, some in modes that are quite different than what I’m used to – so, in a way, it’s hard to tell if I feel like I’ve been successful on a personal, creative level. Time will tell.

What I do know is that I still love poetry (and my thesis topic), not in spite of the way it fails, but because of it.



Speaking of poetry, I can highly recommend that if you’re able to make it to Castlemaine on the weekend of 21st to 23rd October, then you book the Castlemaine Poetry Festival into your diary. Featuring Omar Musa, Chloe Wilson, Mike Ladd, Nathan Curnow, myself, and others, it should be a memorable, stimulating and very poetic few days.


And speaking of failure (of the body, but of nothing else), Fully Sick is a tremendously down-to-earth and informative podcast about the realities of chronic illness. Host Jenny draws her interviewees out of themselves (including me) with warmth and humour – the show reminds us that brokenness is not something we can fix or ignore; it just is. Somehow we succeed, sometimes beautifully, through failing.


That knocking

I didn’t quite expect this, but I’m about to release another collection of poems. That knocking is a short collection, just 7 poems, but one I’m excited to see released. Sometimes there are poems that sit neatly in a full-length thematic book, but often some poems just don’t – they’re loners, awkward in crowds, not sure where they belong. But they’re strong and have things to say – about jet-lag, love, pain, Morrissey and silence – so they keep quietly knocking.

2009 01 058

That knocking is being published through Little Windows, a new small-press based in Adelaide, but globally-minded. It’s being launched as a sibling to three other chapbooks – by Jill Jones (SA), Alison Flett (SA/Scotland) and John Glenday (Scotland). Beautiful small objects, tactile paper, tracing paper inserts, limited numbered editions of 111.

What’s a chapbook, you ask? ‘Ceap’ actually comes from the Old English word for business, trade or barter (not chap as in ‘man’ or ‘fellow’). It’s now jargon for a short book, usually stapled or stitched rather than with a spine, and often distributed informally, direct from author to reader.

If you’re in Adelaide, the launch is on Thursday June 16th, 7pm at Booknook & Bean, Shop 18, Topham Mall, Adelaide CBD. If you’re Facebook inclined, let us know you’re coming – https://www.facebook.com/events/1556074694693777/

If you’re in Melbourne, I plan to make That knocking (and hopefully the other chapbooks) available at Collected Works, the greatest poetry bookshop there is, Nicholas Building Level 1 at 37 Swanston St Melbourne.

If you’re not in either of those places, I’ll be selling them direct at readings and by mail, and you can of course get them direct from Little Windows. Yes, they’re actual objects, something for the body as well as the eyes and the mind.

Three ways of staging bodily difference

I’m no theatre critic, and this is not a review. Although I’ve performed, I feel like I approach theatre (like many other things) from the outside. I’m interested in how bodies experience each other, how people come together around something ostensibly fictional which can also be excruciatingly real.

In the last few weeks, I saw three theatre pieces, each of which dealt with bodily difference – “Give me a reason to live” by Claire Cunningham, “Underneath” by Pat Kinevane / Fishamble, and “Blind” by Duda Paiva / Black Hole. Each was certainly engaging and thought-provoking, but what I found most fascinating was that they dealt with embodiment and with the theatrical encounter in very distinct ways.

I first encountered the work of Claire Cunningham through the photo on the cover of Margrit Shildrick’s “Dangerous Discourses of Disability, Subjectivity and Sexuality”, an intriguing and provocative book about how disability confronts and confounds our desire for a settled individual identity. Seeing Cunningham listed as performing as part of the Festival of Live Art – with a piece that was described as referencing Heironymous Bosch, the Nazis’ murderous program against disabled people, and the UK government’s welfare reform – seemed an opportunity too good to miss.

give me a reason

“Give me a reason to live” is difficult to describe. I was speechless at its end, but buzzing with inarticulate thoughts. Through its 45-minute duration, Cunningham moves across the performance space, and before us, using her crutches – an extended dance of abstract physical sculpture, endurance, prayer, resistance and sheer presence. The piece is wordless, apart from Cunningham’s moving rendition of a German hymn at the climax of the work, so it relies for its impact on the way a human body – in particular, a body which is marked as disabled – affects other bodies. Cunningham implicates us not by a cliched “breaking the fourth wall”, but simply by being visible. One of the most overtly exposing scenes involves her placing her crutches aside and standing, trembling with exhaustion, the house lights suddenly on us all, as she slowly looks into our eyes.

Because there is no script, and with a very minimal set design that relies on subtle shifts in lighting, “Give me a reason to live” transcends easy sloganeering or categorisation. It’s not about disability pride, not ironic self-exploitation or even theatre with a message – but nor is it intellectualised abstraction or detached and cool (I find a lot of dance or movement-based theatre leaves the particular body behind in its obsession with ideas or with “fit” bodies, though there are an increasing number of exceptions). It’s visceral, moving and generously ambiguous – which is exactly how it is when we come face to face with each other.

Where “Give me a reason to live” is wordless and implicates the audience surreptitiously, “Underneath” is 90 minutes of story, monologue and direct engagement. A solo theatre piece by Pat Kinevane (who I saw perform in Clifden, Ireland, in 2013), through the Fishamble company, “Underneath” is the story of the life of a woman who as a child is struck by lightning and severely deformed. Kinevane is a virtuosic and natural performer, who embodies the role with great tenderness and dark wit, speaking from beyond the grave. The script weaves together accounts of childhood bullying, ill-fated romantic hopes, a life lived in shadows and margins, with improvised interactions with the audience.


On one level, “Underneath” appears quite straightforward, almost banal, in what it implies – that this world is unremittingly brutal to those who look different, that ugliness is about character rather than superficialities, and (given that you never know what’s around the corner) now is the time to live and to love. But, as with “Give me a reason to live”, description is not the same as experience. To be part of the audience for “Underneath” is to be confronted with human vulnerability – not just the character Kinevane embodies, but our own.  The audience interaction is certainly unsettling, very direct, but it always seems genuinely democratic, leavened with humour and compassion.

For the last work, Duda Paiva’s “Blind”, I have a confession to make. Paiva came to see a Quippings performance I was in in 2014, and seemed inspired by it. But I was unnerved when I saw a promo for his new work. He had a hump attached to his back, as well as lumps on other parts of his body. Was this ‘cripping up’? Had my own unusual embodiment been appropriated?


In my sensitivity, I should have known, or at least allowed for the possibility, that there is more to a person than meets the eye. Disability takes innumerable forms, sometimes invisible – so that what might at first seem to be projection is in fact solidarity. As a child, Paiva experienced a rare condition which caused painful lumps to grow on his body, including on the inside of his eyelids, which risked his eyesight.  “Blind” turns this experience into a surreal and metaphorical exploration of the desire for healing and self-acceptance.

The piece begins wryly, Paiva sitting among the audience, asking people why they are here also, in this waiting room – what physical problem do they hope ‘madam’ will be able to solve for them? The audience engagement is bold, funny and (where Paiva experiences some reluctance) almost yet not quite intrusive, a risk he clearly loves taking. This aspect of “Blind” is profound in its simplicity and potential resonance. Theatre itself is presented as ritual, as a kind of collaborative public medicine – and all of us are broken or incomplete.

But “Blind” is a show of two realms – the predominant one archetypal, internal and personal. From out of Paiva’s deformities, three puppets emerge – which seem to represent beauty, ugliness and vulnerability. It’s an affecting and resonant conceit. Yet, due to the nature of this metaphorical treatment, the piece implies that these qualities exist in the body itself, rather than in the space between bodies – in the complex weave of physical form, interpersonal interaction and cultural myth.

The show also has a complicated relationship to normalisation. In a series of compelling and highly skilled scenes, ugliness is exposed and wrestled with, but this only happens because the character’s lumps have been excised. By attaching the physical characteristic so strongly to the metaphor, particularly an exaggerated form, “Blind” runs the risk of unwittingly portraying human variability as something to be transcended (whereas I suspect Paiva intends to depict an embrace of the real, vulnerable body).

My ambivalence, of course, only underlines the fact that “Blind” is a thought-provoking piece. I’m intrigued to imagine what Paiva will do next. I wonder how the two realms of “Blind” might be brought together – the collective ritual of theatre and the particular autobiography, the social model of disability with the subjective experience of impairment, and the desire to be well with the acknowledgement of inevitable failure.

the unavoidable prefix

How do you know if someone is disabled?  A wheelchair?  Missing limbs?  Dark glasses and a guide dog?  There are those cliched visual cues, but of course, people can be disabled in very subtle or entirely invisible ways.  Psychological disorder, extreme fatigue, even chronic pain can be difficult to discern in casual encounters.  And there are many people who are unable to enter into the public domain, due to a mis-fit between their bodies and the environment, so they themselves become somewhat invisible.  People can be disabled in one place and not in another.  Or, one day we’re moving confidently through the world, and the next suddenly all the ramps seem to have become stairs.

spiral staircase

What is disability?  The prefix dis- means “apart” or “away”.  It suggests an action, a movement from an intimate connection to a profound distance.  Yet even this distance implies unavoidable relation.  And this is not just a question of time, as in “I was once able-bodied”.  Nor is it a question of compensation, of the kind seen in media portrayals of paralympians, those who “overcome obstacles” with their “superabilities”.  The connection between disability and ability, I think, is much more subtle and complex.

It’s obvious (to me anyway) that there are formidable abilities intertwined with disability.  Not only such phenomena as the adoption of echolocation by some blind people, but also the astounding determination of people with obscure or ill-defined bodily conditions who are shunted from one ignorant or patronising medical professional to the next, the creativity of people experiencing depression who continually improvise new ways of maintaining well-being, the unique and profound insights of all those considered “other”.

I also suspect the opposite is true – underneath the surface of ability is disability.  We’re vulnerable, changeable, and our abilities are limited and temporary.  Whether we’re disabled or not, there is a disabling to our lives.  Not so much a noun as a verb.  Life itself is an enabling condition and a disabling condition at the same time.

About a year ago, something happened to my body that seemed very sudden.  An intense humming, radiating pain appeared, deep in my hips.  Mostly in my right, but also in my left.  Around these joints, a stiffness took hold.  Muscles and ligaments in my legs became tense and felt unstable.  Walking was painful and awkward.  Even sitting for any length of time would bring it on.  From somewhere deep in my body, pain was gushing out of a seemingly bottomless well.  What had happened?  Is this what I am sentenced to now?  Is it just going to get worse?

X-rays revealed the beginnings of osteoarthritis.  The cartilage had worn down only mildly thus far, but the degree of deterioration doesn’t predict the subjective experience of pain.  At times, I’ve felt in agony, crippled.  A year on, I’ve accumulated a raft of strategies – supplements, painkillers, walking (while trying also not to over-exert), allied health professionals, swimming, meditation, and just generally trying to live my life, consciously and carefully.  All of which is of some help.  Yet none of which completely removes the unpredictable undercurrent of pain.

Am I disabled by it?  It feels like it sometimes.  It certainly limits me.  This week has ranged from distracting to unbearable.  But part of the dis- of it is shock – I am having to reconfigure my sense of who I am and what I am capable of.  To confront the fact that identity is an abstraction, the body in continual flux as it struggles with the twinned forces of optimistic regeneration and realistic decay.

I have known for most of my life that I have Marfan Syndrome, and that this often leads to early onset osteoarthritis.  Until last year, I considered myself lucky to have eluded pain, and perhaps thought I would continue to.  I was a paradox – a person with a highly unusual body shape whose only hurdle in moving through the world was people’s prejudices.  No longer.  With this pain, I feel that I am becoming the crippled person of other people’s imagination, and I resent it.

Well, at least today I do.  Things change, and can change again.  My body reminds me.

misc 015

Disability is socially constructed and can therefore be deconstructed (or reconstructed).  It is also bodily, and sometimes it can be alleviated or even resolved.  Particular people are labelled disabled.  But there is a disabling within (and between) every body, which is unavoidable and sovereign.  It is in our molecules and in our social arrangements.  It comes before us, and will come after us.  It humbles and embraces us.