Disability – Andy Jackson

“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.

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.

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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.

Each Map of Scars

each-map-of-scars A 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.

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.

underneath

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?

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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.

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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.

A matter of surprise

“For myself I am neither ‘jealous’, nor ‘inquisitive’, nor ‘hunchbacked’, nor ‘a civil servant’. It is often a matter of surprise that the invalid or cripple can put up with himself. The reason is that such people are not for themselves deformed or at death’s door. Until the final coma, the dying man is inhabited by a consciousness, he is all that he sees, and enjoys this much of an outlet. Consciousness can never objectify itself into invalid-consciousness or cripple-consciousness, and even if the old man complains of his age or the cripple of his deformity, they can do so only by comparing themselves with others, or seeing themselves through the eyes of others…”

Maurice Merleau-Ponty, “Phenomenology of Perception”

Around two weeks ago, two things happened that I didn’t expect. I went to the funeral of a dear friend. Norman was a phenomenally curious and wise man, and while I was trying to pull myself together to write a eulogy, I was reminded of his blogs. One of them, “A body’s in trouble: some resources on the lived body in philosophy and the arts”, was in a way a parallel to the journey I’m on with this blog, though it’s much more a reference point, containing some key resources and insightful juxtapositions. This is where I found the astounding Merleau-Ponty quote above.

Is it a surprise that I can put up with myself? Do I have a hunchbacked-consciousness? Do I know myself only through the (imagined) eyes of others?

I know almost nothing of the life and physicality of Merleau-Ponty. Here he is smoking. The phrasing of the quote is intriguingly ambiguous. He says he is neither ‘jealous’, nor ‘inquisitive’, nor ‘hunchbacked’. That these words are held in quote marks seems to me to potentially imply that he is these things, yet is not defined by them. Consciousness is consciousness, shaped not by itself, but by its position in the world, in relationship.

At the funeral, I had the sense that my friend was not in the coffin, or in heaven, or anywhere else but in the bodies of his family and friends. It was as if, without the central consciousness, his core of being, all that was left was the reflections, resonances, seeds, which we held in us.

The day after, I was offered admission to a PhD program, with scholarship – my proposal was titled “Disabling Poetics: Bodily Otherness and the Saying of Poetry”. I’m planning to write a thesis and a series of poems which will “attempt to outline the mechanisms through which poetry can generate a productive, bodily encounter with the Other”, drawing on the ideas of Emmanuel Levinas and Tobin Siebers, and the work of a few of my favourite poets. I suspect that poetry is uniquely placed to incorporate (pun intended) the consciousness that arises from unusual bodies. We’ll see.

I’ll be writing in the context of a community of friends, poets and thinkers that have come before me, and are around me now. Perhaps they are my others and I am theirs. Which makes this richly complex and unpredictable. So, I don’t know what will come out of this, though I’m certainly looking forward to the privilege. Here’s where you’ll find sporadic updates and minor insights…

captured whispers – puppetry and poetry collaborations

In 2013, I travelled to Ireland to perform “Ambiguous Mirrors“. Very soon, on Sunday 17th May at 5pm, at Thousand Pound Bend, I’ll be performing this piece to a Melbourne audience. This short performance is very personal to me. It meditates on grief, family and genetic inheritance. And the puppetry adds another, profound layer – evoking deep emotion and a sense of the uncanny.

The night also features four other puppetry-poetry collaborations – Lia Incognita with Beth McMahon & Michael Bevitt; Barry Dickins with Rod Primrose; Jennifer Harrison with Victoria Osborne; and Terry Jaensch with Eliza-Jane Gilchrist. This should be very special. If you can make it, please join us – details on the flyer above. Bookings essential and available here.

I also have a number of poetry readings in May, so please check the Readings & Performances tab for more info.

Southerly Journal: four more excursions into poetry & bodies

Last month, I was the guest blogger for Southerly Journal. For those of you who missed it, I made various attempts at hacking through the dense undergrowth around poetry, form, embodiment and otherness (as is my wont). I won’t reproduce the posts here, but here are some teasers and the links… Thanks to Tessa Lunney and David Brooks at Southerly for their support and kind words.

1. Normal Land: Poetry, Disability and Solidarity (by way of Ian Dury and Quippings)

The more I immersed myself in poetry – reading it, writing it, performing it – the more I began to feel that poetry derived its power from the bodily experience of solidarity. The Macquarie Dictionary defines solidarity as “union or fellowship arising from common responsibilities and interests” or “community of interests, feelings, purposes”.⁷ Solidarity is complex, especially because what is “common” is not always obvious. Solidarity can be latent, persisting underneath our social reality, in our biology and chemistry and physical interdependence. Something needs to unearth and activate it, some experience or event which prompts us to recognise that our lives are inextricably connected.

2. Poetic Tourism & Deforming Form: India, Ghazals & Otherness

I’ve suggested elsewhere that we encounter poems as physical objects, textual bodies which have their own particular shape and energy, as a result of the subjectivity embedded in them¹⁴. Each poem is a mix of order and chaos, of expectation and surprise. On the page, and as sound, poems are instances of particularity, where precise detail catches our attention and where form refers back to cultural norms. And, in my experience, the ghazal is a particularly heightened example of this. There is a “normal” ghazal, just as we have a certain image of a “normal body”, and it is in the ways in which we depart from this norm that intrigue and frisson occurs. Of course, relatively normal bodies and formal ghazals, too, have their own undeniable, disruptive energies.

3. Poetic Epigenetics: Bodily memory, silence & community

What my body is and what it isn’t seems like a pretty straightforward distinction. But perhaps “my body” as a phrase isn’t quite right – it assumes certainty and singularity, yet if we look closer, in spite of the continuity and stability we feel in our bodies, we might detect numerous possibilities, even multiplicity.

Certainly, when I look back at what I’ve written over the years, I can see the inflections and energies of other poets and writers. They course through my body and writing as disturbance and affirmation. And I can’t imagine who I am without recalling them. Think of this as poetic epigenetics.

4. “Becoming-Marfan”: Poetry, Genetics & (Auto)Biography

Becoming proliferates in the soil of the complex instability of each body. The writer mines the multiplicity of their body in order that their writing becomes truly creative and viscerally connective. The writing implies not just one writer and one reader, but many others. Deleuze asserts, “[h]ealth as literature, as writing, consists in inventing a people that is missing”.¹⁵ Reading this kind of writing involves a kind of recognition, a sense that the reader’s own intuitions and bodily stirrings have been acknowledged, and even encouraged. The lone reader, sensing other hypothetical readers, suspects the existence of a community she might belong to, or come to belong to. In fact, she creates it by affectively engaging with the text and her own multiplicity.

strangers and the responsibilities of being strange

Most of us in the West feel increasingly isolated from each other, monads with our heads craned towards our smart-phones, or wandering the aisles half-conscious. The proliferation of both social media and cafes is part of the same dynamic – we long for human contact, yet we’re nervous about stepping outside our comfortable circle.

Talking to strangers is unsettling, in both senses – a little frightening and potentially liberating. That goes for all of us, but for those of us who are visibly different, whose bodies are obviously non-conformist, the approach of a stranger carries some peculiarly acute dilemmas.

I want to mention just two examples, and dwell for a moment in the gulf between them.

Late last year, at the local organic grocery, my partner and I were placing the last few items in our basket. Pumpkin, kipflers, silverbeet, most likely. It’s a narrow shop; you have to breathe in or walk sideways to pass people in the aisles. As we were leaving, a woman approached me with a vague smile on her face, her posture leaning slightly towards me. “Hello..”

I used to run a cafe, and I’m visibly memorable, so I assumed she recognised me; I smiled and said hi in return. She asked me how I was going, suggesting things must be pretty difficult. She told me she had a friend who specialised in alternative treatment, and that her own back pain was greatly relieved by visiting her. Oh, ok. She didn’t know me. It was going to be one of those “unsolicited charity conversations”.

I was in a reasonably optimistic mood and felt ok about being open with her. People rarely talk about embodiment, so perhaps this was a chance to share my own version of being human, and move pleasantly onwards. I told her I have Marfan Syndrome, which for me has meant an unusual shape, but actually no pain, luckily and gladly, and smiling while I said how ironic it is.

“Oh, you must have pain”, she said.

“Um, no, not really, no more than anyone, probably less, actually”.

This went back and forth for a while. I kept telling her my experience. She kept insisting she could help me with the problem I didn’t have.

Eventually the pointlessness of it ate away at my resolve. I was polite, direct, with perhaps just a hint of impatience. “I’m sorry, I really have to go, I’m really fine, OK?”.

She was stunned, almost mortified. “Ughh, I was only trying to be helpful!”. I’m reminded that my body seems to raise all sorts of questions that “demand” answers, and that fundamentalism is not limited to religion.

Fast-forward to just a few weeks ago. I’m in the middle of a busy period, wrestling with a thesis and other obligations, rushing into the local supermarket to pick up a few essentials. I only notice my own low-level stress when the little girl in the pink princess outfit cuts me off, running obliviously through the aisles – “Daddy! Look at me!” – and I’m instantly irritated. I try to avoid them, head down another aisle. Of course, being tired, I become indecisive and end up staring at a wall of condiments, unsure.

Suddenly, there’s “Dad” at my side. “Uh… hi…”, he says, casually but nervously, “my daughter was just asking me about your back, and I told her it’s better to ask than to stare, so I’m sorry to bother you, but is it ok if I ask you?”.

At these moments, a certain texture of solidity in my body comes up against a fluid world. I’m face to face with my own reluctance to engage, but underneath there is a way of being that accepts, even relishes, interconnection and the blurring of boundaries. Decision time, in a split second.

I tell them both, as simply as I can – yes, this is my spine, it’s just more curved than straight, and I’m healthy. Everyone has different shaped bodies. The little princess smiles, shyly looks down at her feet, then around the store. She’s obviously happy to meet someone unusual, but just as obviously awkward and a bit bored now.

Dad tells me they’ve asked other people before, and apparently she likes to hug people goodbye. Sure, why not? So, a hug and a brief chat later, we go our separate ways. Through the aisles and towards the checkout, with a slight crack in normality.

For a long time, though I wouldn’t have said it this way, I deeply resented my body and the kind of attention it attracted (and continues to attract). I wanted to be invisible, to move through the world with the anonymity I imagined everyone else had. Peoples’ eyes were like the rays of a harsh summer sun, the intensity magnified through the glass of my own discomfort. They burnt and hurt.

And nothing on earth consumes a man more quickly than the passion of resentment.

Friedrich Nietzsche, ‘Ecce Homo’

I have come gradually, fitfully, with some reluctance, to a realisation that this is the life and the body I have. Autonomy and self-determination is a mythical horizon. The love and support that I have been given over the years is evidence of that – without it, I would still be rushing back to the shadows, wishing for the impossible. In the face of the current neoliberal economy and consumerist culture, in spite of my own self-doubt and fragility, I want to build the connections that nourish myself and others. I want this life.

So, I think that being strange carries a kind of responsibility. There is no prescription, but I would suggest two guiding principles – openness to the unpredictability of the encounter, and respect for the particular embodied subjectivity of the other person. These principles go both ways of course.

For those of you who are strange and are often approached by strangers, I can’t tell you how to respond, though. We all have to find our own way of dealing with this “responsibility”, whether it be a repertoir of answers or a reserve of attitude that we draw on. Each body is unique, and each person makes their way through difference with their own temperament and aspirations. After all, we are more than what makes others stare at us.

For some other thoughtful and useful perspectives, try Carly Findlay’s blog post, Carly’s guest blogger Bailey, and Haley Morris-Cafiero’s provocative photography project.

Feel free to suggest other links or your own suggestions or insights – I’d love to see them.

thirsty for water

When I was young, I swam competitively, but gave it up after spinal surgery at age 12. A long time out of the water would have meant a long time clawing my way back to form, and I really wasn’t passionate enough about it. What I was ambivalent about, of course, was the training, not the water (or even the competition, to be honest). The water was always a magical and transformative place, a place within this world that somehow also transcended it. Swimming, I could leave my mundane and awkward embodiment behind, and completely enter into my body and its potential.

Last year, I went for a “Salamander” with artists and activists Petra Kuppers and Neil Marcus, in Berkeley California. I wholeheartedly recommend you reading Petra’s book “The Scar of Visibility“, the book they wrote together “Cripple Poetics: A Love Story“, as well as taking what opportunity you can to see their performances and videos (maybe start here, with Neil’s brilliant “Disabled Country“). Anyway, the Salamander. They describe it best on the site dedicated to documenting some of the outcomes of this project.

Salamander is a community performance project. We use underwater photography, dry performance workshops, creative writing, clay work and video to go under, to find our disabled beauty emerging from the deep, the wild aesthetic of water, deforming ourselves through sleek unhinged control.
Since May 2013, disabled people and their allies from around the world have climbed into pools and oceans with us, and we float together, enjoying complicated freedom, companionship and adventure. And we give ourselves to the pressures the waters exert on us.
There is little instruction in Salamander swims: the water is the director, the choreographer, as we twist freely in gravity, trusting each other, exploring the integrity of our bodies. We also chat while we are in the water, and explore the easy flow of communication in the fluid medium of supportive water. The emphasis is on play and process.

Here’s the poem I wrote soon after the swim (with a little re-writing, as I can’t help myself…!).

Salamander

Berkeley, California

with Petra Kuppers and Neil Marcus

Squint into this, I would have

said to myself, knowing the key

ingredients and their venom.

A public swimming pool.

A camera. This body. I don’t need

to spell it out. Prose says it’s all there,

always fizzing in the marrow.

The enjambment between us proves

everything blue, all water. This

is a series of dances

we invent as we go, each

the length of a full breath.

One body passes over me, another

winds around my torso, sinuous,

amphibious, tender, muscular,

substantial. Deep animal

play, human mind turned

against itself and for the new human,

submerged in the way we move

together fluidly, or bump

against bone with apologies and

laughter, then dive down again

into the depths where thresholds

blur and the future

opens like lungs…

Clouds move in as I climb out

and become singular again,

rubbing the towel against my body,

but leaving a few drops behind.

I know two things –

it’s too cold to stay here all day

and the world is thirsty for water.

Life keeps hurtling forward. Memories can feel distant. But though we leave the water, we carry it always inside us. I want to remember this.