Although pain is intangible and subjective, it is emphatically not unshareable.
In 2010, I began seeking answers to what I had long felt. Through a series of appointments, X-rays and MRIs made knowledge of my body – the shadowy unknowable finally exposed by the light of the clinical gaze. The result was a series of spectral images revealing undeniable spinal deformity, growth gone wrong. The ease with which revelation slides into correction felt perverse: its presumed obviousness, its unquestionability, its speed in reducing me to a therapeutic object knowable within the comfortable parameters of a diagnostic manual. All without ever requiring or even wanting me to speak. Without ever inviting me to describe the pain with which I have lived for almost two decades. The photo film, the textbook, the chart spoke on my behalf. Michel Foucault explained this phenomenon in terms of a transformation in medical practice beginning in the eighteenth century: physicians went from asking “What is the matter with you?” to “Where does it hurt?” – a marked shift in value from the patient’s narrative to the clinician’s “objective” readings of cell, tissue, organ, and system.2 This increasing reliance upon imaging technologies and clinical expertise to determine a condition is an extension of a historical “alliance . . . forged between words and things, enabling one to see and to say,” in which diagnostic medicine penetrates beneath the flesh to unearth its pathological secrets that even the patient himself does not know or may even work to conceal.3 After all, the body does not lie, but the patient does. This exposure, this dredging up of the body’s secrets is the diagnostic act whose results envelop the patient entirely. The patient becomes their results, at the mercy of those who can interpret it for them.
A primary reason for the devaluing of patient narratives is a dynamic that Elaine Scarry describes as unique to pain’s “remote character of some subterranean fact, belonging to an invisible geography that, however portentous, has no reality because it has not yet manifested itself on the visible surface of the earth.”4 Diagnostic imaging realizes that pain by bringing it to light from its hidden recesses within the body. Yet even when it manifests, the experience of pain remains so idiosyncratic to the individual that the relationship between a body in pain and its witness is one of an unbridgeable ontological difference – their realities remain separate from and inaccessible to one another. For Scarry, pain is thus characterized by a fundamental “unsharability,” for it “does not simply resist language but actively destroys it.”5 Not only does pain prevent its own communication between two bodies by disrupting or breaking language as a medium but, as Scarry argues, it can only be approximated by an already limited vocabulary that tries to limn the visceral outlines of crude feeling. Such grasping for a means of expressing pain typically takes the form of a reversion to a prelingual state of cries or exclamations (ouch!), which only exacerbates the body in pain’s presumed unreliability. In the medical encounter, physicians have come to assume pain interferes with the patient’s judgment and perception, all of which risks jeopardizing the attempt to interpret “objectively” the body’s symptoms. If pain as a bodily event is antithetical to language and the body in pain can only partially represent through limited metaphors or misrepresent the “truth” of that pain, the body in pain’s story can only be at best supplementary – a verification of what a laboratory test or x-ray image already knows to be true – or at the very worst, a liability, a tall tale, a waste of time and money.
As Melanie Yergeau has argued, the reductive assumption that the cognitively disabled are incapable or outside of language – that they are arhetorical – frequently underpins the dehumanization of neurodivergent people.6 If autism is frequently defined by psychologists and behavioral scientists in terms of an involuntary discursive lack, these professionals also perpetuate the troubling belief that autistic people cannot narrate their own lived experience and are therefore not worth listening to because they supposedly lack a fundamental quality of human subjectivity. Scarry’s theory of pain’s antithetical relationship to language risks reproducing similarly reductive assumptions of people living with pain, many of whom express similar feelings of neglect and isolation when attempting to navigate the medical establishment. I believe it is this long-standing distrust of pain and the curative impulse to eliminate it as an undesirable state of being that has animated the recent opioid epidemic in the United States. Western medicine’s assumption that wellbeing is synonymous with being pain-free has allowed for only two narrow responses to pain: amelioration or annihilation. But what of those whose pain cannot be medicalized or those who reject the therapeutic salvation of pain killers? They are presumed to be misguided precisely because of their pain or more nefariously exploiting that pain for self-gain. It’s the pain talking. Sometimes softly, sometimes loudly. Yet why does this prompt distrust and dismissal rather than an invitation to believe and listen?
When I encountered Scarry’s work in graduate school, I was at first relieved to have a framework for why my pain meant so little to the people who claimed to be invested in my care. Her theories of pain also helped to explain the feeling of distance between my body in pain and the bodies around me that seemed to be so much less encumbered by what shortened my breath, by what made me stumble and ache. But I was also bewildered by Scarry’s universalizing claim for pain’s unknowable certainty and that it necessarily shattered language. In my experience, it was not so much the inability for pain to be expressed but rather an unwillingness or unpreparedness of most non-disabled people to invest energy and attention into narratives of pain that may be uncomfortable or frustrating to encounter. For as long as I can remember, my pain has been effusive, for as Joanna Bourke notes, “pain-talk is swollen with metaphor, simile, metonym, and analogy.”7 Despite Scarry’s figure of the person in pain reverting to a state anterior to language and having to point at cartoon faces on a pain scale to convey the extent of that pain, is it really that pain eludes (or to use Scarry’s own violent choice of verb, “shatters”) representation or is it that we have not thoroughly attended to pain’s languages and forms, its poetics?8
My attempts to answer this question drew me to both disability theory and disability poetry. I had always been invested in writing about the body, but as I encountered the work of writers who identify as disabled, I realized how differently these writers were conceptualizing embodiment in and through language. Lamenting his own frustration with traditional poetic forms, Jim Ferris defines crip poetry as that which
centers the experience of disabled people; it shows disabled people taking control of the gaze and articulating the terms under which we are viewed. This is a revolutionary transformation right there, but crip poetry carries in it the potential for an even more radical transformation – a transformation in consciousness, not only the consciousness of the poet and the reader, but the potential to transform the world, to make the world in which we live roomier, not only more transparent and known, but to make space in the imagination, and so in the culture, for the wide and startling variety of rich and fulfilling ways that real people live and love, work and play in this world.9
Ferris defines disability or crip poetics in terms of how it actively challenges biomedicine’s presumptuous belief in its own infallible understanding of how bodies are supposed to look and function. The rise of disability poetics has cleared space for writers who have long struggled with the strictures of the canon, which rarely includes disabled writers or recognizes disability’s presence in the lives of many canonized writers. Crip poetics resists an ableist tradition of bodily representation in favor of rewriting cultural narratives by turning explicitly to lived disabled experience. Like the term “queer” in the LGBTQ+ community, “crip” derives from activist reclamations of “cripple,” an ableist slur referring to physically disabled people, but now often serves as an umbrella term for the disability community. Thus, to claim crip is to identify with a politicized community identity that refuses compulsory non-disability as a prerequisite for social and political inclusion and that challenges stigmatizing assumptions about disability as always requiring medical intervention or correction.10 By problematizing “what we think we know about disability,” a crip approach raises the question if disability can be “known” through the stable, predictable ways in which ableist cultures want to reduce disability.11 Crip poetry instead “think[s] from the critical, social, and personal position of disability” to expand the reductive cultural imaginary surrounding disability by reimagining disability beyond the sentimental, tragic, or inspirational.12
More recently, disability scholars have intervened in the interdisciplinary subfield of pain studies by making a case for understanding chronic pain as a form of disability.13 If pain and its relief “has incited a steady struggle over who has the right, jurisdiction, and authority to say who is in pain,” disability scholarship on pain centers the lived experience of people in pain without insisting on the pernicious narrative of overcoming that gets attached to disabled people.14 The expectation that disabled people in pain must be “good” in that they actively work to alleviate or at least come to terms with their pain individualizes what are often larger structural problems that produce and exacerbate pain. This is especially the case for multiply marginalized people already more likely to be exposed to harm, negligence, and trauma and less likely to have resources to address their pain if they are even taken seriously at all by medical professionals. Margaret Price has called for an urgent “need to think and talk more carefully about pain – not in order to overcome it, but in order to overcome the many oppressions that attempt to annihilate us for feeling pain.”15 As opposed to blaming those in pain for their pain, disability activists and scholars have worked toward reframing pain as a unique way of knowing and inhabiting the world, or to use a term from disability theory, a cripistemology.16
Theorizing pain’s cripistemologies means refusing pain’s calcification into merely the unbearable or the pathological; rather, it is an attending to pain’s own inconsistencies, its dissonances, its contradictions, and even its pleasures, to produce knowledge about pain that “builds from pain” itself.17 For Alyson Patsavas, investing in cripistemologies of pain is an ethical project of new knowledge-making with profound ramifications for the ongoing crisis in pain management:
It is my hope that cripistemologies materialize in ways that permit us to think pain otherwise, to produce painful new knowledge, but also construct analyses about pain that are less painful, and less dangerous to those of us in pain, and in doing so, to re-imagine our (shared, pained) futures.18
Pain’s reduction to an abject state forecloses possibilities for pain as anything other than suffering. Patsavas calls instead for new ways of attending to pain on its own terms even if they contradict or undo received narratives of pain put forth by biomedicine. Such cripistemologies, grounded in painful experiences and histories, do not exploit that trauma by reproducing it but build upon it toward new forms of care that can improve the lives of those in pain. A crip poetics of pain then is a literary means by which such painful new knowledge can be developed toward a more compassionate imagining of shared, pained futures. But what does a crip poetics of pain look like? Does my pain have its own poetics?
My earliest attempts at poetry were during a high school creative writing workshop, where I was still writing primarily short fiction. Because the course was not divided by genre, we were constantly exposed to vastly different literary forms and asked to integrate approaches from other genres into our own experimental pieces. While free verse was expectedly the dominant poetic form among the pieces shared, there was an intense fascination among my classmates with highly structured and constrained forms like the sestina or the sonnet. At one point, it became a contest among the aspiring poets in the room to write in the most archaic forms they could find: the alexandrine, the villanelle, the pantoum, the ghazal. My own discomfort with poetry at the time aside, I resented the competitive ethos increasingly pervading what should have been a safe space for experimentation, as well as the elitist implication that mastery of traditional poetic forms necessarily meant a more capable poet. Like Jim Ferris, who always found such received forms “baffling” and overwrought during his own formation as a poet, I struggled to understand why my peers reveled in what so often felt like a torturous manipulation of their experience to conform to unforgiving parameters set by traditions not even their own. 19 I understood the challenge and even pleasure of working within a form’s limits, but why not imagine a new form that fits the content, especially given how many poems were intimate explorations of pain and embodiment?
Years later when I was just beginning to experiment with verse, my chronic pain intensified. During classroom freewrites, I found myself no longer able to do the cognitive gymnastics necessary to reproduce the poetic forms my former high school classmates fetishized. My pain was interruptive as much as my fog obscured the clarity. I needed to envision my ideas within structures that always felt imposed upon my own ways of thinking. During days of acute pain, the confinement of my experience to meter or rhyme felt impossible, if not more painful. In a bout of frustration, I started to mark the sensations of pain whenever they emerged in the act of writing. Playing with the ways we commonly denote line breaks and stanza breaks in literary criticism, I would insert a slash or double slash where pain interrupted or arrived upon the scene of writing. These experiments, about which I never felt confident, ultimately became a preferred form for my poems for how it witnessed my pain most honestly. While reading crip poetry, I learned to trust in my pain as not only real in how it shapes my engagement with the world but also as itself poetic. Rather than disavowing pain’s presence in the labored performance of an able-bodied “I” in my poems, I followed the lead of crip poets playing with how the disabled body could be enfleshed in the poetic line.20 Crip writers like David Wolach and Jay Besemer model how poetry can capture the unexpected sensations and situations of pain irreducible to suffering.
David Wolach’s occulations begins with the assumption that the body has “always been a site of occultation, a deluded witness,” and thus carries a palimpsestic record of “hidden, often invisible ‘marks’ left by social forces not benign.”21 Wolach’s poetry serves as an “investigatory-somatic” practice that reclaims self-knowledge from the invasive dominance of the medical gaze that seeks to know bodies in order to control them. Rather than alight on any singular definition of his disability, he toggles between his affective and sensory experiences of losing motor function and the more diffuse political body that exists beyond the fantasy of the bounded individual. This attention to the individual’s relationship to the social and the structural makes his work particularly crip. For example, poems like “3. (corporeal self punishment)” deploy strikethroughs to reveal the occulted qualities of the body and the poem (or body-as-poem or body of the poem) that persist even under erasure:
to think of the body, or poem, as shorn predicament, where its languages, this predicament’s public utterances, are not only muted and constricted and shaped by the catastrophes of late capitalism (including the medical industrial complex), but are also in some ways necessarily complicit in the making (narrating) of catastrophe.22
The “shorn predicament” Wolach describes refers both to the poem’s fragmentary form, and also the disabled body itself broken under the strain of social and political forces. The strikethroughs draw attention to the absent presence of disability that persists even under erasure, while gesturing to what follows as a replacement, repetition, or remnant that resists that erasure. The reader is invited into Wolach’s games of linguistic disorientation that “shakes us up, produces rather new feelings and behaviors” even during seemingly unfeeling states of banality or distraction that characterize life in late capitalism.23 Pain’s omnipresence is not marked by shattered language but instead by a proliferation of language made uncanny.
In witnessing his bodily transformation and its vertiginous states of becoming, Jay Besemer’s Chelate (2016) meditates on the fraught process of hormone therapy and its relationship with debilitating illness caused by bodily toxicity. Besemer uses chelation, or the injection of ethylenediaminetetraacetic acid (EDTA) into the bloodstream to bind and remove heavy metals, as a concept metaphor for thinking about medical transition similarly predicated on the deliberate intake of chemicals to produce bodily transformations. Like Wolach, he deploys a similarly crip method of formal disorientation: the entire book is composed of tight paragraph-like stanzas punctuated by colons. These colons both interrupt and aid the reading process, provocatively generating a simultaneously dissonant yet associative effect between phrases and words:
the origami contrivances are burning : dead
languages crisping & blackening between us, autumn
leaves destroyed in a fish-gasp of protest : our cross-
wired failure : what I need & intend are signals from
beyond the rim of your galaxy : the tune you want
me to play is impossible for one of my species : so be
it : no more false deaths : down payment for the big
one : this departure is also the arrival ::24
What begins with vegetal images of the burning “origami” paper and languages likened to dead “autumn leaves” transitions abruptly to the scale of “galaxy” and “species.” Like Marlena Chertock’s Crumb-Sized, a speculative collection of poems about skeletal dysplasia and chronic pain that similarly turns to images of outer space, Besemer’s interweaving of earthly and cosmic via a series of enjambments invites entirely different readings depending on whether one reads by the colon breaks or by the line.25 Without conventional punctuation, phrases and fragments come into focus as blips of meaning rather than as full declarations of complete thought. As Besemer describes of his own embodied poetic practice and his body in transition, meaning is consistently made, unmade, and remade: “open the words out into small instants of occurrence: short, declarative : hardworking ::”26 The disjunctive experience of zooming in and out between individualized “instants of occurrence” and larger subtitled sections witnesses a crip selfhood emerging in “small instants” rather than linear progressions toward normalcy or healthiness.
Both writers complicate Scarry’s belief that pain necessarily breaks language as an unsharable enigma. While they may disorientate the quotidian by “deforming” the poetic line, I argue against an otherwise ableist reading of this as the destruction of language itself or a compensation by reforming the body in verse. The “disrupted language flow” and “sense of unorthodox kinetic experience” that characterize this body of work evoke the process of coming into painful cripistemology: they invite the reader to share the experience of navigating painful episodes or bodily changes even if it arrives at no clear sense of resolution.27 Because the realities of pain and chronic illness cannot be directly shared, Wolach and Besemer invent a crip grammar uninvested in representing those realities perfectly, instead actively inviting misreading or rereading without the comforting reassurances of conventional word order or defined meaning. They both refuse the certainties of biomedical knowledge about their bodies by inhabiting the linguistic excesses of clinical language untethered from their positivist moorings. What emerges is fleshy jargon that thickly describes what Stephanie Heit refers to as the “changeable fluxes in energy, interest, concentration, capacities” that constitute her crip experience.28 Disability poetics creates a collective experience of shared uncertainty, of contingency in the face of disability’s vicissitudes.
* * *
As I would learn from one of my chiropractors, my body was quietly betraying itself. But his mounting frustration really stemmed from how my case betrayed him and his training. No amount of sessions on the gravity table or manual adjustments could fix what was structural to my body. At least, not without great cost: multi-stage complex surgery with double-digit percentages for possible paralysis and unexpected complications even with six months to a year of physical rehabilitation. I was, for all intents and purposes, incurable.
My chiropractors, spine specialists, and physical therapists all operate on what Alison Kafer has termed “curative time.” This teleological temporality depends on “an understanding of disability that not only expects and assumes intervention but also cannot imagine or comprehend anything other than intervention” as it proceeds along a set trajectory from diagnosis to prognosis to treatment to recovery.29 While some stages may be longer or shorter, the progress narrative still marches toward inevitable cure. The curative imaginary affords no place for the incurable or the chronic who cannot be rehabilitated or at least normalized by medicalization. These unruly bodies are condemned as being “out of time, or as obstacles to the arc of progress” oriented toward eugenic futures where illness and disability are to be purged all together.30 For those whose pain has no end, they remain perpetual problems because they do not stop hurting and nobody seems to know why.
The need to stop hurting has also inspired much of the genre of disabled life-writing since the twentieth century. Many of these works tend toward the reparation or “healing” of what Arthur Frank has famously described as “narrative wreckage” or illness and disability’s interruption of an individual’s narrative of their own life.31 Though these writers write toward a new narrative of their lives that attempts to reconcile their selfhood with their bodily experiences, these memoirs and accounts are predicated on a narrative reenactment of cure even if they end in the individual’s coming to terms with their chronic conditions rather than full recovery. The narrative typically hinges upon the revelation of a condition previously undiagnosed and the acceptance of a new life and identity constituted by this diagnosis and treatment. While I do not seek to undermine the necessary personal and cultural work these narratives do, I share the concerns of many disabled people who see these narratives as perpetuating a series of unfair expectations that disabled people either get better or get used to their suffering. From Anne Boyer’s The Undying: A Meditation on Modern Illness to Lisa Olstein’s Pain Studies to Esmé Weijun Wang’s The Collected Schizophrenias, a newer generation of life-writing has emerged that dwells in illness and disability without moving toward the reparative; these works directly critique the cruelty of curative teleology by undermining the certainty of any of its stages.32 Their non-linear, recursive accounts expose the teleological “next step” as hardly inevitable or predetermined, but in fact a contrivance of the medical-industrial complex that profits from the transit of pained bodies through these identifiable stages.
Crip writers often underscore the aporias of diagnosis to reveal its partiality – in the sense of both incompleteness and bias. Molly McCully Brown’s The Virginia State Colony for Epileptics and Feebleminded imagines the lived experiences of those institutionalized at the Colony, which sterilized patients diagnosed as “defective” without consent from 1924 to 1956. In “A Dictionary of Hereditary Defects,” Brown reproduces what resembles the textbook language of eugenics underpinning the operation of the Colony:
the comparison of its and normal children must almost be
a comparison between two separate species.
It’s shocking, really, how many ways
a being can go wrong before they’re even born
into the world.
Cretinism: you are caught between human and animal.
Heavy and flat-faced. You have hoofs for hands,
a cow’s wide tongue.
Epilepsy: you are destroying yourself from the inside out.
Feeblemindedness: I could shout into the cavern of your mouth
and hear my own words echo back off the high walls of your head,
over all the blank space of your brain. This is the most useful
noise that you will ever make.
Idiocy: you cannot even reproduce my echo.
You are living, yet already your body
has started to decay. It knows
you are not for this world.
You go limp or spastic,
turn to stone or slime.33
Each diagnostic entry is accompanied by a definition that the reader discovers is not clinical but instead the implicit ideological justification for the Colony’s invasive (mis)treatment of its “inmates.” Brown reveals the way in which every diagnostic term obfuscates its own social and cultural assumptions. Each of these conditions are understood to make the disabled monstrous (i.e. an animal-human hybrid) or unproductive (i.e. the only “useful” sound the feebleminded make is echoing the clinician). Diagnosis confines the disabled to an abject state of species difference from the “normal child.” This state of “wrongness” feels predestined even before birth and forecloses any possible future for the “defective” (“you are not for this world”). Lennard Davis demonstrates how diagnosis has always been a “profoundly ambivalen[t]” concept given its etymology where the Greek prefix dia means “through” or “across” and gnosis means “knowledge”: “If you gain knowledge ‘through’ something, is the knowledge gained of the subject or the object? If the object is the means through which you know, then is the knowledge of the subject or the object? What makes the knowledge ‘thorough’ in that case?”34 Brown undermines the power dynamic constituted by diagnosis by showing how the knowledge contained in the “Dictionary” says far less about the diagnostic object than it does about the subject doing the diagnosing. If “normal children” are to be defined by and against “idiots” and “defectives,” Brown questions the validity of diagnosis as somehow independent of these ableist views that always already shape diagnostic criteria. Diagnosis in this eugenic context is not open inquiry but a closed fatalism that permits no viable life for the “defective” who is “not for this world.”
Accompanying Brown’s subsequent poems in the collection – “The Cleaving,” “While Under,” and “Numb” – are facsimiles of typewritten case notes for Edith Miller, Dorothy Campbell, and Frances Carr, all of whom have received an “Order for Sexual Sterilization” on the grounds that these “inmates” are “insane,” “idiotic,” “imbecile,” “feebleminded,” and “epileptic.”35 These documents similarly critique diagnosis by showing its one-sidedness and how these “hereditary defects” elaborated in the previous poem can be conflated to assume that the “inmate” will be “the probable parent of socially inadequate offspring likewise afflicted.” Rather than truly knowing these “inmates,” the diagnostic process of knowing “through” them, to put this in Davis’ formulation, is hardly thorough at all. In the end, the knowledge produced is the obvious, something that could have been learned from simply listening to the “inmates” themselves: “The doctors tell you all the things / you know about yourself / as if it’s news. // ‘You are unwell. / You are in pain. / Something is wrong.’”36 Diagnosis throughout Brown’s volume is exposed as a sham performance of epistemic certainty used only to forward a eugenic agenda that has already decided in advance that disabled life is expendable. It merely seeks confirmation of what it already knows. In contrast, Brown’s persona poems reinhabit the disabled subject’s lived experience of marginalization by medicine to assert a self-knowledge that eludes diagnostic categories. Brown reverses the dehumanizing abstraction of disabled life in these case files by investing the personas she inhabits with an interiority that challenges their reduction to their bodies.
Disabled poets have responded to such eugenic dehumanization by insisting on the value of their own crip knowledges, which exceed the reductionist qualities of biomedical diagnosis and the progress narrative of cure. Fully aware of the chronicity and incurable qualities of her conditions, the speaker in Jesse Rice-Evans’ poem, “What I’m Losing,” meditates on her “speckled neck [as] a reminder of what I’m losing; a sliver more / every day, flawed bodies are forgettable usually but how I am both / withering and widening is chipping away at me in ways foolish / and restless no settling, no forgiveness.”37 The unrelenting march toward curative wholeness, with its saccharine sentimentality, gives way to a “restless” crip temporality defined by her body’s changes known intimately. The speaker cries because she believes her life to be grievable – worthy of mourning in opposition to the idea that “flawed bodies” are “forgettable usually” when they do not repair or recover. To inhabit this chronic state of both mourning and disability is her way of refusing to forgive ableism’s cruelties and positing a counter-eugenic narrative in favor of a disabled life that has the right to mourn.
Inhabiting chronicity is a unique feature of disability poetics, which puts crip time into practice through formal experimentation. Defined by disability scholars as a resistant orientation to normative time, crip time usually refers to flexibility about timeframes like delayed start times for events or extended time for the completion of tasks. But crip time at its most radical explodes time as we know it, or as Alison Kafer describes it, “rather than bend disabled bodies and minds to meet the clock, crip time bends the clock to meet disabled bodies and minds.”38 Kay Ulanday Barrett follows the arrythmias of their chronic pain that emerges on the page in a series of gaps that pervade the poem:
Literally beginning the poem with how “chronic pain wakes them up,” Barrett sets the pace of the poem in terms of that pain whose presence is marked by the irregularity of the spaces between words and phrases but paradoxically resolve in even line breaks. The “long dragging” of reading the poem contrasts with the brevity some of the lines, many of which are fragments. If “disability and illness have the power to extract us from linear, progressive time with its normative life stages and cast us into a wormhole of backward and forward acceleration, jerky stops and starts, tedious intervals and abrupt endings,” Barrett’s poem arrhythmically leans into the idiosyncrasies of pain’s crip time that, like Woloch’s and Besemer’s work, the reader experiences intersubjectively in the act of reading.40
Arrhythmic verse is but one way of achieving what Petra Kuppers aptly calls “cripping the act of reading.”41 Frustrated with the conventional confessional mode of many illness narratives, Emilia Nielsen turns to poetry “to put theoretical argument into narrative action” because “it provides a space for the deeply subjective articulation of experiential knowledge.”42 Nielsen’s project in Body Work (2018) is to articulate in crip terms chronic illness related to breast cancer. Drawing on Driedger and Owen’s concept of “dissonant disabilities,” Nielsen queries how identification with chronic illness as a disability shifts in relation to symptoms and therapeutic regimens. Her poetic experiments throughout the collection attempt to find a form “living in dissonance, simultaneously well and unwell.”43 Divided into six sections, Body Work plays with form through the kinds of breaks and gaps that Barrett employs but also through the use of footnotes, hybrid words, and parentheticals that resemble biomedical discourse. Section III, “Undone,” is composed of two separate lines bisected by a divider that cuts across every page in the section, all of which forces the reader to either read one line at a time through the section or attempt both. This contrapuntal back-and-forth between paratext and the main poetic bodies of each section slows and disrupts the reading process, especially as the formal experiments change from page to page, section to section. By foregoing consistency in form, Nielsen leaves open how the story of her body is to be read, be it at the crip pace of her own writing or the reader’s reading, without “try[ing] and easily repair[ing] what remains in tension.”44
This crip reorientation toward recognizing the ableism of the clock rather than presuming the deficiency of bodies catalyzed one of the most dramatic shifts in my own poetic practice. Learning to attend to my body’s time, which I soon realized did not conform to any systematic “writing practice” or the temporality of writing for publication, meant learning to write differently, more compassionately for my body in pain. Turning to poetry was at first a response to the ableist demands of academic time that intensified my scoliosis-related disabilities in graduate school.45 In the “publish or perish” model of academia, I found poetry to be a liberating practice untethered to the conventions of literary criticism and instead open to speculative and creative thinking that did not necessarily result in fully-formed arguments and page counts. Particularly when my brain fog became too thick to write portions of my dissertation, poetry offered a different pace and mood of thinking that was more accommodating of my neurodivergence. In their own meditation on brain fog, Mel Y. Chen has suggested that “cognitive or intellectual disability – and its broader matrix of cognitive variation – represents the near unthinkable for academia” to the extent that academic culture actually works to produce what they have aptly termed “disciplined cognators” trained to think and react quickly.46 To put it in Chen’s terms, poetry enables me to write as an “undisciplined cognator” – one whose fogginess may impede normative performances of academic “rigor” or argumentative coherence but may instead produce crip forms of knowledge and expression unwilling to be at the mercy of deadlines and time constraints already incompatible with the extended processes of intellectual labor.
I found in time that my poetic attempts at inhabitation and description of my pain on its own terms has helped me move toward a more holistic understanding of my disability not so easily localized to my spine but manifesting across my body at different times and places. I have since adopted Merri Lisa Johnson’s identificatory term, “scoliosis-related disability,” which both destigmatizes spinal curvature as defect and better addresses the multiplicity of disabilities that underlie “scoliosis” as a convenient (read lazy) term for diagnosis. If “scoliosis-related disability is episodic, not linear, a matter of intensities, sensations, and situations, not illness and cure,” my poetry – as a collation of pained lines jotted on bar napkins, edges of notebooks, voice recordings, on note-taking apps – tries to lay down into the arrhythmia of these shifting embodied states.47 Poetry embodies crip time, the times of my pain.
* * *
The future of pain requires that we move on to a new, less certain way of thinking.
There is a grimness to futurity, a morbidity at the promise of / an end, a slow getting there; we learn to ache in our own ways…
Does pain’s nature change just because I can now name it? Despite having shared most of my life with pain, I only recently learned the formal name of my disability: kyphoscoliosis. A combination of two spinal deformities – kyphosis (from the Greek kyphos- meaning “bent,” referring to the rounding of the upper back that can create a severe curve colloquially referred to as a “hunchback”) and scoliosis (the curvature of the spine left or right into a “S” or “C” shape) – kyphoscoliosis often manifests in childhood and usually gets identified through routine screenings done in grade school. If diagnosed early enough, physical therapy or bracing can prevent further curvature or even correct it. Yet for many, including myself, the curvature can develop late and without cause – what medical professionals describe as idiopathic. While kyphoscoliosis is referred to as a singular diagnostic entity, it is also a conflation of two separate spinal deformities. Accompanying this complex condition is a host of other conditions related to its effects on my musculoskeletal system from shortness of breath due to the contortion of my rib cage, as well as brain fog, anxiety, and irritable bowel syndrome closely linked with my chronic pain.50 Interconnectedness, even if painfully so.
Without the certainty of origins, a younger me found it easy to speculate wildly, to blame genes and the follies of nurture, to blame my own ignorant self. Why this set of conditions? Why this pain? And if I found out why, what then? I spent years writing toward these origins that I slowly sensed were illusory, if not irrelevant. While I remained fixated on the past, the healthcare providers I met were busy looking ahead: they all see a future where my pain will worsen, whether or not I discover the cause. Some more fatalistic than others, these prognostications resemble the fatalistic definitions from Brown’s “Dictionary of Hereditary Defects”: they seem to imagine nothing else in my future but pain and only pain – a blanketing totality that permits no escape. Admittedly, this future is not entirely exaggeration: I have witnessed so many of my family members with spines that curve and fingers that gnarl. The writing is on the wall, my primary care physician recently warned me. But is what is written only incapacity and dread of its inevitable coming?
Crip poetry has taught me how to imagine futures with bodies like mine thriving in it. Alongside the disabled writers I have come to admire, I find myself returning again and again to works of speculative fiction and poetry, which Margaret Ronda valorizes for their aesthetics that “play on the tense, shifting, unstable relationship between what was, is, and could be, offering other imaginative possibilities that recast present historical tendencies in new light.”51 Despite speculative fiction’s “predominantly narrative modality,” speculative poetry’s “capacities for paratactic leap and temporal play, its nonlinear logics and modes of expansion and condensation” have made it a particularly exciting site for crip intervention.52 Or as I have tried to show, crip poetics has been doing this work all along. I have come to understand crip poetics as engaging in its own capacious project of speculation into more inclusive and accessible futures. Disability poetics is hopeful world-making and understanding how my chronic pain and scoliosis-related disability contributes to that larger project involves an ongoing process of ethical reflection about what it is that chronic pain has taught me. Emma Sheppard remarks that “chronic pain does not require constant remaking of the world and of the self because it creates a new state of being: one becomes a person who lives with pain rather than a person or body in pain.”53 For me, this cripistemological process of learning how to live beside and with my pain has been the work of poetry.
In recent years, my mother has taken to placing a hand on my shoulder when we take walks together during my visits home. Despite her fatigue and sharp pains after about fifteen minutes of slow walking, we make the effort because we appreciate the fact that we can still share this pained experience together. I used to feel like we were taking steps closer and closer to our inevitable loss of mobility – a bedridden end that she has seen happen generation after generation in her family. My mom herself laments what she sees as her increasing dependence to do “something as simple as walking.” This is what compulsory non-disability does: it makes us mourn the loss of something mythical – our independence. But I finally appreciate the interdependence made possible by our shared experiences of scoliosis-related disability across generational lines. Our two bodies connected by her arm on mine, our mutual balancing in careful motion. We teeter, we limp, we backtrack, we stop to rest. This, too, is crip poetry.
While I may never fully know my mother’s pain and she may never fully know mine, this is not the unbridgeable chasm of difference that Scarry imagines in the encounter between two bodies in pain. In fact, if I have learned anything from my own pained poetics, it is precisely an appreciation of the pain of others that opens up new crip models of care that can truly cater to pain’s queer forms. This appreciation is a relinquishing of perfect knowing, a cripistemology that remains vulnerably open to being unable to fully access one another’s pain but still honoring it. In Javier Moscoso’s cultural history of pain, he alludes to Ludwig Wittgenstein’s relational theory of pain as a rejoinder to Scarry’s theory of pain’s unsharability: “Scarry’s great intuition, that pain has to do with meaning, weakened when we accept that meaning should always be referential (which is obviously not the case) and when we miss its collective nature.”54 Wittgenstein’s claim is simple: that we only know pain and the pain of others through language, which constitutes communities of pain as an interdependent, interrelational set of experiences. We may approach pain’s event horizons through language, but the point is not to achieve perfect understanding of each individual experience of pain – this is futile work that gets us no closer to the solidarities we need to achieve the accessible futures we desire.
What remains at stake is a collective project of imagining what living with pain together can look and feel like, rather than working to imagine painless worlds or a world of private pains. Such a pluralistic vision was what David Morris, five years after Scarry’s thesis, speculated would be the future of pain: “a pain that has recovered or discovered its multiple voices,” that “promises not so much a chaos or babel of competing tongues as the possibility that we may learn how to enrich our knowledge of pain by listening to more than one voice.”55
Brian Hurwitz, “Looking at Pain” in Deborah Padfield’s Perceptions of Pain (Heaton Moor: Demi Lewis Publishing, 2003), 11. ↩
See also N.D. Jewson’s “The Disappearance of the Sick-Man from Medical Cosmology, 1770–1870,” Sociology 10, no. 2 (1976): 225–244. ↩
Michel Foucault, The Birth of the Clinic: An Archaeology of Medical Perception (New York: Vintage Books, 1994), xii. ↩
Elaine Scarry, The Body in Pain: The Making and Unmaking of the World (Oxford: Oxford University Press, 1985), 3. ↩
Scarry, The Body in Pain, 4. ↩
Melanie Yergeau, Authoring Autism: On Rhetoric and Neurological Queerness (Durham: Duke University Press, 2017), 4–10. ↩
Joanna Bourke, The Story of Pain: From Prayer to Painkillers (Oxford: Oxford University Press, 2014), 53. ↩
See Eula Biss’s “Pain Scale,” Seneca Review 35, no. 1 (2005) for her incisive critique of the “Wong-Baker Faces” scale originally developed to help children describe their pain. ↩
Jim Ferris, “Crip Poetry: or How I Learned to Love the Limp,” Wordgathering 1, no. 2 (2007): par. 5. https://wordgathering.syr.edu/past_issues/issue2/essay/ferris.html. ↩
I am indebted to Alison Kafer for this concise definition of crip. On the politics of claiming crip, see also Simi Linton’s Claiming Disability: Knowledge and Identity (New York: NYU Press, 1998) and “Coming to Claim Crip: Disidentification with/in Disability Studies,” Disability Studies Quarterly 33, no. 2 (2013): n.p. https://dsq-sds.org/article/view/3705/0. ↩
Merri Lisa Johnson and Robert McRuer, “Cripistemologies: Introduction,” Journal of Literary & Cultural Disability Studies 8, no. 2 (2014): 130. See also McRuer’s Crip Theory: Cultural Signs of Queerness and Disability (New York: NYU Press, 2006). ↩
Johnson, McRuer, 134. See also Paul K. Longmore’s “Screening Stereotypes: Images of Disabled People in Television and Motion Pictures” in Why I Burned my Book and Other Essays on Disability (Philadelphia: Temple University Press, 2003), and Joseph Shapiro’s “Tiny Tims, Supercrips, and the End of Pity” in No Pity: People with Disabilities Forging a New Civil Rights Movement (New York: Times Books, 1993). ↩
For examples of disability studies and pain, see Martha Stoddard Holmes’ entry on “Pain” in Keywords for Disability Studies (New York: NYU Press, 2015), Emma Sheppard’s “Chronic Pain as Fluid, BDSM as Control,” Disability Studies Quarterly, 39, no.2 (2019): https://dsq-sds.org/article/view/6353., and Margaret Price’s “The Bodymind Problem and the Possibilities of Pain,” Hypatia 30, no. 1 (2015): 268–84. ↩
Keith Wailoo, Pain: A Political History (Baltimore: Johns Hopkins University Press, 2014), 11. ↩
Margaret Price, “Desiring Pain, Desiring Distress: Meditations on Disabled Bodymind.” Debilitating Queerness. DC Queer Studies. College Park, MD, 5 April 2013. Plenary Address. 2. ↩
See Johnson and McRuer’s “Cripistemologies: Introduction” for their definition of “cripistemology” and the rest of the special issue of Journal of Literary & Cultural Disability Studies devoted to applications of this concept. ↩
Alyson Patsavas, “Recovering a Cripistemology of Pain: Leaky Bodies, Connective Tissue, and Feeling Discourse,” Journal of Literary & Cultural Disability Studies 8, no. 2 (2014): 206. ↩
Patsavas, “Recovering a Cripistemology of Pain,” 216. ↩
Jim Ferris, “The Enjambed Body: A Step Toward a Crippled Poetics,” The Georgia Review 58, no. 2 (2004): 225. ↩
In Michael Davidson’s overview of disability poetics (Oxford Handbook of Modern and Contemporary American Poetry, ed. Cary Nelson, Oxford: Oxford UP, 2012), he notes that “perhaps the closest link between poetry and disability lies in a conundrum within the genre itself: poetry makes language visible by making language strange.” This is analogous to how “the presumed normalcy of what it means to be human is made strange by the encounter of a nontraditional body with an ideology of able-bodiedness” (5). ↩
David Wolach, “Body Maps and Distraction Zones,” Beauty is a Verb: The New Poetry of Disability. eds. Jennifer Bartlett, Sheila Black, and Michael Northen (El Paso: Cinco Punto Press, 2011), 335. ↩
Wolach, “Body Maps and Distraction Zones,” 335. ↩
Wolach, “Body Maps and Distraction Zones,” 337. ↩
Jay Besemer, Chelate (Brooklyn: Brooklyn Arts Press, 2016), 19. ↩
Marlena Chertock, Crumb-Sized (Los Angeles: Unnamed Press, 2019). ↩
Besemer, Chelate, 84. ↩
Katerina Tsiokou, “Body Politics and Disability: Negotiating Subjectivity and Embodiment in Disability Poetry,” Journal of Literary & Cultural Disability Studies 11, no.2 (2017): 209. ↩
Stephanie Heit, The Color She Gave Gravity (Brooklyn: The Operating System, 2017), 112. ↩
Alison Kafer, Feminist, Queer, Crip (Indianapolis: Indiana University Press, 2013), 27. ↩
Kafer, Feminist, Queer, Crip, 28. ↩
See his The Wounded Storyteller: Body, Illness, and Ethics (Chicago and London: University of Chicago Press, 1995) for his narrative account of illness as rupture and wreckage. ↩
Anne Boyer, The Undying: A Meditation on Modern Illness (New York: Farrar, Strauss and Giroux, 2019); Lisa Olstein, Pain Studies (New York: Bellevue Literary Press, 2020); Esmé Weijun Wang (Minneapolis: Graywolf Press, 2019). ↩
Molly McCully Brown, The Virginia State Colony for Epileptics and Feebleminded (New York: Persea Books, 2017), 56. Italics in the original source. ↩
Lennard J. Davis, The End of Normal: Identity in a Biocultural Era (Ann Arbor: University of Michigan Press, 2013), 85. ↩
Brown, The Virginia State Colony, 58–64. ↩
Brown, The Virginia State Colony, 59. ↩
Jesse Rice-Evans, The Uninhabitable (Little Rock: Sibling Rivalry Press, 2019), 51. ↩
Kafer, Feminist, Queer, Crip, 27. ↩
Kay Ulanday Barrett, More Than Organs (Little Rock: Sibling Rivalry Press, 2020), 55. ↩
Ellen Samuels, “Six Ways of Looking at Crip Time,” Disability Studies Quarterly 37, no. 3 (2017): n.p. https://dsq-sds.org/article/view/5824/4684. ↩
Petra Kuppers, “Performing Determinism: Disability Culture Poetry. Text and Performance Quarterly 27, no.2 (2007): 95. ↩
Nielsen, “Chronically Ill, Critically Crip?,” n.p. ↩
Nielsen, “Chronically Ill, Critically Crip?,” n.p. ↩
Nielsen, “Chronically Ill, Critically Crip?,” n.p. ↩
See my online essay, “Disorientation: On Disability in Graduate School” on Synapsis: A Health Humanities Journal (http://medicalhealthhumanities.com/2017/11/28/disorientations/), “Free and Unfeeling” in Post45: Contemporaries “Pain Cluster” (https://post45.org/2020/02/free-and-unfeeling/), and “Slowness, Disability, and Academic Productivity: The Need to Rethink Academic Culture,” in Disability at the University: A Disabled Students’ Manifesto, eds. Christopher McMaster and Ben Whitburn (New York: Peter Lang, 2019), 11–19. ↩
Mel Y. Chen, “Brain Fog: The Race for Cripistemology,” Journal of Literary and Cultural Disability Studies, 8 no. 2 (2014): 176. ↩
Merri Lisa Johnson, “Cripistemologies: Introduction,” Journal of Literary & Cultural Disability Studies 8, no. 2: 135. ↩
David B. Morris, The Culture of Pain (Berkeley: University of California Press, 1991), 277. ↩
Rice-Evans, The Uninhabitable, 15. ↩
I am indebted to Susan Sontag in AIDS and its Metaphors (New York: Farrar, Strauss, and Giroux, 1989) and Paula Treichler in “AIDS, Homophobia, and Biomedical Discourse: An Epidemic of Signification,” AIDS: Cultural Analysis/Cultural Activism, 43 (1987): 31–70 for their reminder that AIDS is not only carelessly conflated with HIV but also flattens what is actually a series of different illnesses and opportunistic infections that affect immunocompromised individuals. ↩
Margaret Ronda, “The Social Forms of Speculative Poetics,” in Poetry’s Social Forms, eds. Margaret Ronda and Lindsay Turner. Post45: Contemporaries, n.p.https://post45.org/2019/04/the-social-forms-of-speculative-poetics/. ↩
Ronda, “The Social Forms of Speculative Poetics,” n.p. ↩
Emma Sheppard, “using pain, living with pain,” Feminist Review 120 (2018): 65. ↩
Javier Moscoso, Pain: A Cultural History (Basingtoke: Palgrave Macmillan, 2012): 5. ↩
Morris, The Culture of Pain, 283. ↩
Image: "ths moment in space," by bill bissett, 2020.