Exquisite Adjustments

For over a decade, I have been an outpatient at between five and seven separate hospital clinics. The polyphonic nature of my illness and impairment begs a throng of specialists to interpret each voice it speaks. I am grateful; at times, I am overawed. As a solo immigrant to Australia who arrived here in debt – much of which was incurred by paying for private radiology and specialist appointments – I am humbled by the access I now have to public care and subsidised medicine. However, I also, often, feel smothered by my own gratitude and by the system that expects it from me, relentlessly. The unspoken rules of clinical culture require the mutual exclusivity of grace and rage: you aren’t meant to express anger or resistance concurrently with stoic thankfulness. And yet I feel these things in tandem. I’m persistently, politely submissive to diagnostic rigours and clinical treatments, but also horrified by the frequent objectification, condescension, and assembly-line rush. And I’m starting to realise that others experience this complicated combination of feelings too.

It has been, and still is, incredibly difficult to know how other people with illness and impairment are feeling. I find modern medicine in Australia – and the experience, more generally, of being a person with chronic illness and impairment here – deliberately, painfully isolating. Nowhere at my hospital, as far as I know, is there anything resembling a peer network for patients. One of my therapists has decried this lack of connectivity to me, having identified a number of her other clients with similar feelings and symptoms who were also suffering from the stigma that comes from the assumption – ostensibly held by many, if not each of us – that we are alone in our difference, singularly aberrant, the only one. ‘I wish so much,’ she said one day, ‘that you could connect and communicate with each other.’ But, as it stands, this is not how it works. You show up, wait, and advocate for yourself alone.

The only significant way in which you are together, with other patients, is in the shared solitude of the waiting room, or as implied members of the same statistical figure, de-identified on the page. One treating doctor advised me that fewer than 1% of people who share my autoimmune condition have experienced disastrous brain injury as a result of taking a particular medicine. To support this, she referenced a pamphlet published by the pharmaceutical company who manufactures the drug in question. Apart from my concerns around the reliability of that Big Pharma-penned figure, I thought: so there we are. There we are: the invisible, lumped-together, lucky 99%, and also the 1% whose brains lost that terrible lottery. But who are we, really? And what would we say to each other, if we were realer than numbers?

 We (a collective term I use precariously to describe people who experience illness and disability) are grouped together in so many ways that don’t help or matter: in questionable, terrifying statistics; in stereotypes; at the receiving end of indiscriminate assumptions. We navigate cultures and attitudes that, as Esther Ottaway puts it, ‘communicate to the disabled and chronically ill that we are failures. That we are weak people, just not strong-minded enough or self-disciplined enough to be healthy’. But on the other side of harmful, broad-brush labelling, we are individuated in ways that increase loneliness and stigmatise difference. This isolation is often compounded by overlapping factors that, as Andy Jackson writes, may range from ‘introversion’ and ‘habit’, to ‘a bruised psyche, having felt the punch of too many stares and remarks’, to the ‘capitalist, neoliberal insistence on self-reliance’.

Navigating these conditions, I experience a solitude that makes me feel exceptional in all the ways I don’t want to be: an oddity. The only, unreasonable one requesting adjustments. When I speak about my experiences of health, illness, and disability, I speak mostly, almost exclusively, to my doctors – rather than to my peers. In fact, more often than not, the doctors do most of the speaking: I listen, learn, obey. Down the corridor, other patients are held at a distance, silent while they wait.

Raging Grace: Australian writers speak out on disability started out as poet and teacher Andy Jackson’s submission for RMIT University’s inaugural Writing the Future of Health Fellowship. Jackson’s proposed project zeroed in on what I’ve discussed above: the unhelpful ways that people with illness and impairment are mashed anonymously together, kept apart, and/or prevented from speaking amongst ourselves or in concert with each other. Considering the diverse conditions that we privately, presently live with – our ‘subterranean nows’ – he began reflecting on how we might co-design brighter ‘possible futures’. He titled his application ‘The Future of Health is Collab/Oration’, neatly bundling up two vital points: that we need to be together in different, better ways, and that togetherness – as it relates to health futures – has to involve shared speaking. 

Jackson was awarded the fellowship, but that’s also when the whole thing stopped being exclusively about him. To form an editorial team for the emergent project – a volume of co-produced poems, essays, and artworks by twenty-three artists – he partnered with Iutruwita/Tasmania-based poet and editor Esther Ottaway and Kerri Shying, a writer of Wiradjuri and Chinese-Australian ancestry. The editors’ names appear in alphabetical order on the cover of the anthology, and the three sections of the ‘Forward in three parts’ are prefaced by numbers rather than names. And so, from the outset, and within the first few pages, notions of individual ownership and attribution are challenged. For the most part, we are being set up to read without knowing who’s done (all or which parts of) the writing; we are being encouraged not to know which body to assign a set of words to. If we are tempted to flip forward to sneak a peek at the author’s name – or if we make an effort to divide and assign the parts of a co-authored work to specific individuals – then we are prompted, I think, by the book’s insistently collaborative architecture, to question our own reasons for doing so. Jackson reflects on what the exercise in extended, collaborative co-writing taught him: ‘I wrote things I would never have written alone,’ he says, ‘perhaps because I learnt a little more about how to listen (and how easy it is to assume)’. The whole design of this book brings the reader into confrontation with the mechanics of assumption: the whys and hows of the compulsion to locate, identify, isolate, and assign.

So Raging Grace begins, and so it continues: doing its radical work not just through content and theme, but through form. Its co-construction challenges everything we might conventionally assume about what it means to be alone – lone patient, sole author, problematic individual body – and, equally, what it means, or could mean, to be together, in ‘capacious solidarity’. This is a solidarity constituted by ands and buts – punctuated, Jackson writes, with ‘[a]mpersands and ellipses everywhere’ – and Shying appends an associated word of warning to readers. ‘It’s a mistake,’ she advises, ‘to assume consensus in a room of people with disability.’

In his fellowship application, Jackson rejected the assumption that impairment-related disadvantage exists in a vacuum – or can be primarily blamed on, or located within, the ‘problems’ of individual bodies. Difference exists because people co-exist, showing up each other’s uniqueness by virtue of juxtaposition; and disability only exists to the extent that we fail, in our collectivity, to accommodate difference. ‘Disability may be experienced in individual bodies,’ Jackson writes, ‘but it is created and amplified (and potentially alleviated) by social forces and relationships’. He is alluding here to the social model of disability, which posits that disability is generated when a person with an impairment encounters environmental or attitudinal barriers, and experiences disadvantage as a result. Colin Barnes writes that, according to this model, disability is recognised as a ‘complex form of social oppression’ generated when impairment meets barrier.

In other words, the social model defines the ‘problem’ of disability as encounter-based – something arising from interactions between the self and the world – rather than body- or pathology-based – a problem that exclusively comes from, and belongs to, unfortunate individuals. The latter, body-based, it’s-your-problem-and-your-problem-alone paradigm is premised on the medical model of disability, which, Deborah Marks explains, ‘focuses on individual pathology and attempts to find ways of preventing, curing or (failing these) caring for disabled people’. The medical model dominated Western medical definitions of disability, and related policy-making, throughout the twentieth century. As Barnes has shown, before the release of the World Health Organisation’s consultatively re-designed International Classification of Functioning, Disability and Health (ICF) in 2001, its predecessor – the International Classification of Impairments, Disabilities and Handicaps (ICIDH) – relied heavily on the medical model’s position that disability is ‘almost exclusively […] an individual medical problem or a “personal tragedy”’. As Vanessa Alford and her colleagues have argued in the International Journal for Equity in Health, the ICIDH therefore failed to ‘capture the impact of the social and physical environment on functioning’. Despite these critiques, Western understandings of disability remain largely informed by the medical model, which continues to serve a dark, conservative purpose: by holding to the idea that people with impairments are their own self-contained, pathologies, it provides an excuse not to pursue progressive, equity-enhancing change. Marks adds that it also allows so-called ‘able-bodied’ people ‘to keep anxieties about their own vulnerabilities at bay’, by pointing ‘to “Others” who have a problem’.

This is both telling and ironic, since, to paraphrase a former academic colleague, disability is the only club that anyone can, and is overwhelmingly likely to, join at any time. Disability comes for us all: as we age and become frail, or have life-altering accidents, or experience illness, we encounter the barriers in society that preclude equitable accommodation of these realities. The medical model is fear-based: fear of the odd, the strange, the contagious and contorted, and the fear of joining those ranks. Leaving concepts of hyper-individuality behind to embrace universal vulnerability – as well as inter-dependence – can be an intimidating proposition that the medical model quashes by othering and stigmatising those with illness and/or impairment. There is a healthy majority to which you do not belong, it says, and that’s on you. ‘Individual effort and the ability of the body to reflect your own efforts rather than chance,’ Shying argues, ‘is central to Western dream-spaces’. It’s lucky, she adds – and certainly no coincidence – that most of us who experience impairment and disability are ‘the long-distance runners of fear’. Our experiences require a sustained engagement with fear: ‘vulnerable we are,’ Shying writes, ‘in a world unused to the combination of power and vulnerability’.

Rejecting the medical model’s way of thinking, the social model of disability is generally where we start, when those of us with direct or indirect lived experience talk about illness and impairment. (Note that this is not the only starting point: see also the Human Rights model of Disability and Disability Pride or the Pride Model for other, interrelated perspectives.) But despite the social model’s widespread adoption, there are many threads of disagreement, debate, and dissonance that proliferate in these conversations.

Vibrant variation, and sometimes friction, emerges when people who experience or research disability converse together. When Jackson invokes the goal of ‘capacious solidarity’, therefore, I don’t think he’s calling for greater consensus. This solidarity doesn’t require consistency or agreement. Rather, we need more room – spacious, vaulted capacity – for wildly different points of view and individual opinions. Or as Jess Kapuscinski-Evans and Angela Costi put it in their poem, ‘Trees’: room for the biodiverse plurality of it all, given ‘space to grove’. 

The writers in Raging Grace acknowledge and refute the systemically isolating force of the medical model, and, as Shying identifies in her ‘Forward’, its alignment with the ‘hyper-Capitalist Western’ idea that the best, and most normal, way to be human is to fit into ‘the mould of “individual work unit, ready for action”’. Sometimes, the writers attend to this topic with glittering humour, lampooning the notion of optimal health as a pull-your-own-socks-up affair. ‘This child could grow            a tail if it wanted to,’ Sarah Stivens and Kit Kavanagh-Ryan write in the collaborative poem, ‘Congenital (trans planted)’. ‘In the nineties,’ Ottaway and Rachael Wenona Guy posit ironically in ‘The shamed body addresses is owner’, ‘real women / wore power suits, did step aerobics / and made up their minds to get over cancer’. Other pieces turn a wry, darker lens on the intersections of Western medical models and capitalist norms, where responsibility for getting ‘better’ is placed on the individual alone: as though overcoming impairment or illness were on par with the endeavour of an employee striving to meet key performance indicators. ‘[C]hild medical intervention is all about normalisation,’ Kavanagh-Ryan writes. As a young person in this system, for example, she was told that:

Loneliness blooms like a cloud on the basis of the assumption that as individuals we have failed to ‘overcome’ due to lack of effort or will or commitment. Last-ditch survival strategies can compound this isolation: ‘I have learned that you survive this medical system by pretending, going along,’ Jasper Peach writes with Guy in ‘Selections of Memory from Double Pneumonia / Selections of Memory from the Psych Ward’. ‘You crawl deep inside some cavern of yourself and wait it out like a wounded animal’. Connective storytelling offers a way of resisting medical systems that encourage multifaceted isolation, but it isn’t a mode of communication that’s commonly accommodated in Western medical contexts. Jackson and Costi write, for example, about one attempt to overcome aloneness by theorising connective storylines – only for this effort to be rejected by clinicians who prefer to restate the body’s status as a one-off unit. ‘I visited a distant aunty in Cyprus who was said to grow nuggets under her skin’ they write in ‘Rare’. But ‘I was told, your aunt’s angiolipoma is not related to your colony. My body is viewed as an isolated island’. Were it written by an individual author, this anecdote might serve purely as poetic complaint: a lament for rejected storytelling in a medical context, resulting in reinforced isolation. But relaying this experience in the vehicle of a co-authored poem, whose constituent parts cannot be reliably divided up and assigned to individual authors, does something different. It reclaims access to relatedness, to a family of experience, that the patient as ‘isolated island’ was denied: two authors have put their names to this, turning I into they with political and poetic purpose. In ‘Coalescent’, one of the book’s most polyphonic pieces, Jackson, Beau Windon, Michèle Saint-Yves, Robin M Eames, and Ruby Hillsmith more directly critique the idea that we are individual units of ownership and production, or that our value lies therein: ‘Writing           alone, it felt as if the letters / were the labours of my deviant        bones […] Yet my worth was                         never a possession / never private property’.

Katerina Bryant and Jackson do point out that, for many of us, solitude and retreat – though often turned to out of necessity rather than choice – have been useful, positive spaces to inhabit, writing that:

There was a brief period during which the normalisation of remote participation allowed a way out of isolation into inclusion. ‘I heard the talk about missing events and replied that I’d never been to so many book launches. Now, they were online; I could be there,’ Bryant and Jackson write. However, they note, this was short-lived, and the mass return to in-person modes of participation compounded isolation in new ways: ‘[w]hen the pandemic continued … the doors started to shut. I was alone in a new way. I could not leave the house, but now people didn’t understand why. Events shifted to in-person, and I could no longer listen. I felt the gap widening’. The impact of this on people who experience disability – and their vocational, aspirational futures – was and continues to be brutal. ‘My employment future: forever 21C-’ Ottaway writes in ‘Perenially Gaslit, the disabled reject humanity’. ‘[P]ower positions for the full-time only / and no more Zooms to reach me in bed: / the pandemic’s over now’. All of this – the heaviness of carrying difference and experiencing associated exclusion – threatens to result, as Jackson and Costi phrase it, in a ‘myopia about the future’ and ‘impaired ability to dream’.

With skewering clarity, Raging Grace explores how people who experience disability are not only isolated from peers and society, but also subject to the division of the body into multiple, alienated parts. Doctors, Gaele Sobott writes in ‘Rage: Mind the Gap’, ‘fetishise my body parts, my organs, breaking me into smaller and smaller pieces. I bounce from one specialist to another. The gaps between specialists fascinate me’. In ‘Grace: We need what we deserve’, Alex Creece describes this as a broken, toxically atomised approach to communities as well as individuals: ‘[w]hen our care is segmented into discrete parts – minds, bodies, skin, eyes, teeth, whatever – with varying levels of accessibility and affordability, we are not healthy’. Clinical atomisation sets up the idea of body-as-battleground, or something like a ship constantly subject to the threat of mutiny by problematic parts – ‘[a]s if’, in the words of Ottaway and Guy, ‘my very matter was in argument / with itself’ (‘The dysautonomia dialogues’). Treatment informed by this approach culminates in painful self-division, or what Peach and Guy call ‘a newfound brokenness’, rather than holistic healing. It also can position the person experiencing illness or impairment in a role akin to prison warden, partitioned from and tasked with observationally disciplining their own supposedly unlawful parts. ‘I’m told to monitor you,’ Leah Robertson and Costi write, in a poem that explores the experience of surveilling a body said to be made up of aberrant segments:

For Ottaway and Guy, the resulting alienation can go so deep that subjugated parts of the body are prompted to speak up for themselves and talk back to the supervising self, saying:

In the same poem, the parts of the self that have been subordinated, and objectified as unnatural or disease-ridden, plead in the voice of someone abusively hidden out of shame: ‘You speak my names’, these parts say here, ‘but will you introduce me / to your friends?’

Several of the writers in Raging Grace respond to this by imagining something like compassionate reconciliation – or at least, a rejection of the role of master/warden/combatant. In ‘Uncertain Parts’, Robertson and Costi tenderly address their stigmatised components, writing:

Jackson and Costi recognise that this reconciliation isn’t an easy project. It can feel exploitative rather than reintegrative, more like mining stigmatised veins of the body for utility than resisting that stigmatisation in favour of self-solidarity. While there’s a certain pay-off to finding value in the individual nuggets you excavate, it leaves you longing for the sense of something more holistically accommodating:

Capaciousness is called for here: the point isn’t to amalgamate all parts into perfect synthesis, but to see and give equal weight to divergent participants – honouring both difference and collectivity while challenging hierarchies. Ottaway and Guy imagine what it would be like for the segmented body to reclaim a common language it might share with itself. What’s perhaps so deeply moving is their  acknowledgement of the fear involved in wanting this – it is often easier to lean into inevitable, perpetual division than to risk the hope of harmony: ‘[I]t was only at night’, they write, ‘that I sensed some terrifying possibility / that there might be a song / that might belong to us’ (‘The shamed body addresses its owner’).

For the academic and artist Allison Bennett, there is a point of identification – a possible, flowering solidarity – between those who have been treated (or whose body parts have been treated) as objects, and forms of matter conventionally classified as inanimate. Their photowork vegetal / digital (2022/23) encourages audience members to think of and interact with ‘flowering street-trees’ as sentient, responsive life-forms. It’s an artistic exercise in the application of a ‘neuroqueer phenomenology’ that both interrogates ‘the agency of things’ and challenges ‘the culturally constituted hierarchies of objects and subjects’. The bundling of neurodivergence with queerness into the term ‘neuroqueer’ is more than a ‘rhetorical gesture’, Bennett argues, pointing to research which found ‘that autistic adults are eight times more likely than their neurotypical counterparts to identify as LGBTQI+.’ Further to this, queerness and neurodivergence share a clinical inheritance of subjection to attempts at disciplinary, ‘corrective’ normalisation. As Bennett points out, both gay conversion therapy and Applied Behavioural Analysism were developed by the same psychologist and frame the ‘gay or autistic subject as non-human, as needing to be “made human” through intervention’. In a radical inversion of this framing, some theorists such as Melanie Yergeau propose that ‘autistics side with the object’. Bennett draws on Yergeau’s work as well as on Devon Price’s observation ‘that many autistics tend to “object personification”, to ascribe feelings and agency to objects’. 

Echoing this perspective, many of the pieces in Raging Grace explore the act of ‘siding with the object’ in ways that playfully and imaginatively extend the concept of ‘object personification’. It’s impossible, and perhaps unimportant, to determine whether this practice is limited to those writers who identify as neurodivergent. What is apparent is that many of the disabled authors in this collection ascribe personal and political significance to what political theorist Jane Bennett describes as ‘experiences of a world populated by animate things rather than passive objects’. When Gaele Sobott imagines a ‘future where we keep the best of what works in Western medicine but transformatively analyse and restructure its dehumanising, toxic aspects’ – its ‘hierarchies and elites, racism, and underlying eugenic perspectives’ – she anticipates that ‘[i]t will be a future where we reconnect to traditional ways of knowing that link us to the earth and non-human life’.

Being separated from one’s objects – or having one’s objects be dispersed – can be an experience that mimics the clinical, hierarchical atomisation of one’s own parts. In ‘Objects of Illness / Recovery: An Alternating Collaborative Essay’, an illustrated piece about the state of things after a flood, Jacobson and Bryant recount that ‘[m]y objects were splayed across three different suburbs, and I felt fractured’. Reflecting on the now-unknown whereabouts of a Yiayia’s hairbrush, Bryant and Jackson question the proprietary nature of subject-object relations, while observing how things play an active role in our experience of the world. ‘My belongings (who belongs to who?),’ they write, ‘build the routine of a day contained in my home’ (‘Pensive Air: An essay in two voices’). Peach and Guy use the confiscation of objects as a way of expressing the dehumanising effect of having one’s personhood and dignity deleted in hospital. ‘My phone and laptop are taken,’ they write, in a short, straightforward sentence that nonetheless, somehow, heaves with the weight of a particular grief (‘Selections of Memory from Double Pneumonia / Selections of Memory from the Psych Ward’).

In other parts of the book, authors dig into plant magic and identify with animals and earth-matter as non-judgmental, gentle allies whose vibrant capacity ‘[w]e are all taught […] as children but then […] are encouraged to forget’, as Kapuscinski-Evans and Costi write in ‘Trees’. There is a sense of wanting to reconnect with a pre-anthropocentric way of experiencing the world, and thereby benefit from a benign allyship with nature. In ‘Instructions for the broken’, Jackson advises those who feel othered to

A porousness arises here with egalitarian regard for one another’s sentience – a blurring of distinctions between self and other, a softening of the sense around where I ends and it begins. It only makes sense that this blurring would resonate with those who carry – and may sometimes or often be subject to the surgical removal of – growths on or beneath their skin. Jackson and Costi think about this in ‘Rare’, reaching to understand that the ‘thing’ or ‘things’ they carry may be more ‘person’ – more equal-footed, sentient part – than first imagined. ‘I still carry this thing around,’ they write at first, ‘stopping now and then to tear another layer of wrapping off, unsure exactly what I will find … Is this shape a heart or an icon? Brain or egg?’ Here, the carried ‘thing’ is imagined as a burdensome parcel whose concealed identity can only be unpacked with fear. But later they warm to the idea of approaching the ‘shape’ with compassion and curiosity. In this later framing, they start tenderly to wonder why and how it came to be a part of them – or even unwillingly trapped in them – saying, ‘This is baby. Doesn’t stop crying. Will never escape my body …. In my fifties, I seek to know its gender, its story, its intention’.

All of this work – the incisive, creative critiques of the medical model and its legacy, including but not limited to the forcing of bodies into capitalistic molds; the identification and description of proliferate forms of isolation; and the radical rejection of subject/object hierarchies in favour of participating in a world of ‘vibrant materiality’ – was forged in the generative atmosphere of the Raging Grace project’s new collectivity. ‘Peers and peer work,’ Shying argues, ‘have been a way inside hidden or hiding populations for a long time; the term describes the non-hierarchical process of knowledge sharing and community building by people who recognise each other as belonging to a shared identity’. This book affords a powerful space for the type of peer work and connectivity that we so rarely experience as disabled people. Part of creating this peer space includes overturning assumptions about what it means to show up with gregariousness and commitment: ‘[w]e were battling to be present,’ Ottaway writes of the group’s Zoom meetings, but adds that ‘[t]hese people totally understood, when I arrived in my dressing-gown, that I was still seriously working on the project’. Rejecting one of the most widely-held, harmful stereotypes about disabled people – that we’re lazy – she notes that ‘[t]he disabled are always working’, and, what’s more, as Saint-Yves and Eames specify in ‘Questing Beast’, ‘[t]he cognitive load’ of the work we do ‘is immense’.

The co-design of Raging Grace helps address a major problem encountered in disabled communities: the all-too-common placing of this cognitive burden on the overloaded, famous few (including, but not limited to, Jackson himself, former Arts Access Victoria CEO Caroline Bowditch, and prominent activist Carly Findlay). Jackson’s hope that ‘this book prompts more books like it’ isn’t just a marker of generous community uplift. It’s a cry for others – including allies – to take up the mantle of doing the work. The more voices that speak and actively listen in this space, the more pressure may be relieved or removed from overburdened community representatives who often battle through danger and discomfort to advance the cause. ‘If I wanted to be safe,’ Jackson and Peach write in ‘Stealth Mode’, ‘I would hide, and I have, but I keep stepping up / to microphones, stages, footpaths. What am I doing here, / acting as if their eyes on me couldn’t hurt?’

I think, also, that the space and collectivity fostered by the project resulted in more and better ways of being inventive, subversive, and safe together than any individual participant could have anticipated. ‘[W]e worked in a symbiotic flow,’ Ottaway notes, ‘using the quorum that was present in each moment, people finding manifold ways to be heard and seen in a web of connection and acceptance and multiform communication that was almost its own organism. I’d never worked in an environment like it’. For Jackson, ‘[t]he writing-together has fuelled a desire for more writing-together, but it has also brought each of us back to our own individual voice, refreshed’.

What are the insights – or rather, radically helpful suggestions on how to proceed as artists, activists, allies, and identifying community members – that Raging Grace offers? First, it embodies a refusal to prioritise certain forms of telling over others, defying generic classification: poetry, prose, and other forms of writing sit alongside each other here without definition or defense. This keeps the door open to more genres of telling – and more space for them to be received – which we need if we’re going to collectively foster a medical system and society that ‘listens to those whom it purports to serve’ (Jackson). This is what’s meant and encompassed by the emergent practice of ‘Narrative Medicine’, which, Jacobson argues, identifies the sharing and receipt of ‘[p]atients’ own writing, artwork, and storytelling expressing live experiences as the answer to creating understanding and empathy’ between doctor and client. The kind of writing that’s in this book needs to get into clinical settings. It isn’t mere metaphor or sidecar embellishment, but perhaps the best way we have to clue professionals in on the sound of the whole-body symphony. There needs to be room for it all, instead of selective deletion, atomisation, or the hierarchical privileging of some narratives over others. In current clinical conditions, Jackson and Costi write, there are ‘[s]o many stories, competing, another survival of the fittest’. We want better. ‘I want every deformed story, scarred, ashamed, to find its niche,’ they continue. ‘All those interrupted ones. Let them hold me as I hold them’.

Second, Raging Grace insists on the necessity of inventiveness – particularly linguistic inventiveness. Luckily, Ottaway observes, disabled people are perpetually, necessarily creative: ‘[w]e are used to being innovators, rigging workarounds, hacking the so-called “normal” ways of doing things […] So our writing, too, is creative and multifarious.’ As Guy writes in his ‘Afterword’:

Answering this call to action, the authors here do the work of reclaiming, contorting, and/or inventing the words that they require. Among the new language coaxed from rescued roots, my favourites are perhaps the variations stemming from the slang term ‘crip’: a word that, as the authors of ‘Colaescent’ have it, ‘our deviant tongues rewild to glory’. In ‘Dis-topia’, Jackson and Creece use it as a synonym for dazzling profusion: ‘My inbox was crippled,’ they write, ‘in the way we mean it now, / as in abundant, brilliant’. In ‘CRYPTHAND’, Saint-Yves and Eames playfully leverage the sonic similarities between crip, crypt, and cryptic, sketching out potentially meaningful correspondences between that which is impaired, buried beneath the earth, and/or difficult to decipher. Bron Bateman and Jackson use the word on its own to self-define as innovatively resourceful creatives: ‘We are crip – beautiful things. Our tongues create a world of means […] To think, extricate your tongue from what is’. These authors demand that diagnosis involve poiesis: making, newfangling, cripwrangling the deeper, weirder terms we need to tell wholler truths about ourselves and bodies.

Third, and perhaps most importantly, for all the incredible peer connectivity it facilitates, Raging Grace asks that disabled voices be heard more widely – not just by each other. There is a relief in connecting and communing with peers – in all our similarity and wild variety – but without gaining the ear of practitioners and allies, community-talk can become a lonely, defeatist kind of echo chamber. When we aren’t heard more widely, there is reason to despair: as Windon, Jackson, Saint-Yves, Eames and Hillsmith lament, ‘[p]leading with others has got me nowhere’ – and as a result, ‘the gate to my heart is damaged // the gate to my head is gone’. In Peach and Guy’s ‘hopeful reimagining’ of an ideal place of recovery, greater recognition of the fact that we are literate experts on ourselves forms the basis of ‘a shared understanding’: ‘I am respected as a person who has lived in this body for forty-one years’, they envision. ‘The people caring for me do so after listening …. Humility, respect and collaboration are abundant. I am believed’ (‘Selections of Memory from Double Pneumonia / Selections of Memory from the Psych Ward’). Better healthcare requires better listening, but also a two-way engagement in the valued practice of storytelling: Sobott hopes for a future where ‘[m]edical storytellers skilled at researching communal grief and our place in the web of life will inform diagnosis’ (‘Rage: Mind the Gap’). Only then can we start to imagine medical practitioners who will embody Costi’s phrase: ‘[w]e are at ease with your ability to generate these intricate stops and starts across the terrain of your remarkable body. Teach us your pain and we will listen’ (‘Rage: Therapeutic Future – ReQuesting the Beast’).   

‘I always tell people,’ Shying writes in ‘Rage: Joy beyond the futurd’, that ‘I’m living in our future – you are all coming here one day, I just rushed in and got my ticket first’. This is, I think, a nod to that inevitability I mentioned earlier – disability’s place on every individual body’s plate of experience. But it is also a way of pointing out that disabled people are future-forgers, and have already worked out – by dint of necessity, and also by virtue of brilliant crip creativity – innovative solutions for more inclusive, equitable, and flexible ways of being, together and alone, if only you are willing to tune in. Whether or not you do, the future-focused dreaming of crip creatives continues. Even when it seems that we have succumbed to the bulldozer of the mainstream; when it feels incredibly unlikely that we’ll see the changes we want; or when change comes too slowly to believe in – the work represented and embodied by those who contributed to Raging Grace persists. As Peach and Jackson write in ‘Stealth Mode’:

Like Peach and Jackson, my health limits my ability to think in well-worn, backward-facing ways. Instead, my criphood demands creative thinking: to uphold independence and continue engaging with the world, I am required to hack the system, request adjustments, and think new ways of participating into existence. As Windon, Jackson, Saint-Yves, Eames and Hillsmith write, ‘I close my eyes and build the path as I am walking it.’ This work is personal, endlessly imaginative, and exhausting, and when done in isolation, can crush and dispirit. To keep going, I needed to feel less alone. I needed this book, and hope there will be more like it. Even when it becomes difficult to dream of better health futures, this peer work in its capacious solidarity emboldens me to keep inventing, agitating, wanting and demanding more.