Abstract

In this hybrid critical-creative paper, I explore disability poetry and crip poetics via my manuscript, Body Work. Poetry provides a site to explore crip experience because, as Petra Kuppers (2007) argues, "poems and their performance of meaning clasp something of crip culture's force" (p. 103). Here, the "instability of language" (Kuppers, p. 89) provides a way of understanding chronic illnesses as "dissonant disabilities" (Driedger & Owen, 2008). In placing chronic illness in a disability studies framework, and via crip theory, which critiques the common sense naturalness of ability and heterosexuality, I investigate how chronic illness demands ways of understanding that intelligently address mind and body unpredictability. In close, I will revisit Robert McRuer's notion of "critically crip" arguing that any claim to crip be enacted with intentional criticality.


There is a particular pleasure in rethinking categorical understandings of bodies and minds— whether it is in the mode of crip, queer or feminist theorizing—and I, like others, suggest an even greater satisfaction in inextricably connecting these perspectives. Alison Kafer (2013) suggests that while some may flinch at the harshness of the word "crip," "This desire to make people wince suggests an urge to shake things up, to jolt people out of their everyday understandings of bodies and minds, of normalcy and deviance" (p. 15). For me, naming not only one's theoretical perspective, but also oneself, as "feminist, queer, crip," does not induce anything akin to a wince. Instead, it speaks to intimate connection, to bringing together what many of us love fiercely. Yet this desire to jolt people should remain a central concern of crip theorizing and activism. In fact, this desire to shake things up remains strong as I query commonplace understandings of the proper place of chronic illness within discussions of disability culture.

The claiming of disability, for those who identify as chronically ill, remains a site of tension. In their introduction to Dissonant Disabilities: Women With Chronic Illnesses Explore Their Lives (2008), Driedger and Owen ask: "Can women with chronic illnesses identify as people with disabilities all the time or only sometimes?" (p. 8). This is a complex question because while chronic illness can be a source of disability for some, for others it is unpredictably so. In fact, if I am not currently experiencing unmanageable symptoms, what is my relationship to chronic illness? What is my identity in relation to disability? As such, I seek to highlight how poetry provides a critical site to explore these questions through crip experience and embodiment. In this hybrid critical-creative paper, I explore disability poetry and crip poetics by turning to my own manuscript, Body Work. The genre of poetry is able to illustrate why chronic illness is a "dissonant disability" (Driedger & Owen, 2008) by experimenting with innovative formal techniques on the page to show both what can be said, and what is left unsaid, about the disabling effects of disease.

What I wish to explore is engendered by fierce love and fuelled by curiosity. I am querying what the poetry and poetics of disability might offer, as a mode of writing, theorizing and community making, for those of us who identify as chronically ill. Uncomfortably, my exploration is self-referential for I'm obliquely curious as to why I decided to write to my experience of life-altering illness, and the protracted nature of chronic illness, through the genre of poetry. This predicament is not, in fact, straightforwardly resolvable. Yes, before diagnosis I wrote poetry, and I continue to do so. But I have never been an obviously confessional poet and if there was anything in my life that I most wanted to keep private it was, in the beginning, my struggle with chronic illness. Whereas my first collection of poetry, Surge Narrows, was concerned with writing desire in wild and urban places, my second collection, Body Work, explicitly undertakes to write the undoing of the body via a crip poetics. This piece, then, is written in four dictions, maybe even four voices. Throughout, there is a preoccupation with theoretical concepts such as "dissonant disabilities," "unhealthy disabled," "reparative reading" and "critically crip." And I write a personal narrative, a story of my own experience of chronic illness, which weaves its way in and out of the argument. Also included is poetry written out of crip experience in the mode of a poetics that explicitly engages with innovative or experimental techniques. Here the footnote functions as another poetic voice, as this "found poetry" is made up of lines of prose taken from Anita G. Jablonski's Skin: A Natural History. While it is my intention to crip chronic illness in these poems, in the end I also understand that meaning making is co-created with you, reader, as you distil these words through a crip perspective or as someone willing to be nudged, winced even, into another way of understanding the world. In these poems, language play is brought to the fore, as there is pleasure too in evoking playfulness, in claiming what might otherwise be understood as a personal tragedy as a site of unexpected whimsicality.

Dissonant Disabilities

I want to establish why chronic illnesses can be understood as "dissonant disabilities," what I understand as both a theoretically rich description and a generative point of departure to explore the poetry and poetics of disability. When I first found Diane Driedger and Michelle Owen's anthology Dissonant Disabilities I had been diagnosed with an autoimmune disease and seriously ill for at least a year. In that first year of being unwell—a time where the search for a tolerable biomedical treatment plan to serve symptom management seemed illusive—I struggled.

In that first year, I thought spontaneous remission the only thing to make my life "normal" again. Then, I understood illness as something of a personal failure. It felt like the sum total of the worst thing I could imagine. And I feel intense discomfort now in revealing my thinking back then. Although I no longer understand illness to be the worst thing to have ever happened to me, I would never say illness is a "gift." For me, that phrase is too trite to grant the respect of intellectual consideration. For the phrase, "illness is a gift," to be a true one, personally, I would have to accept all that illness brought in its wake as a kind of gift and, thus, these gifts would have to include: the gift of hands shaking so badly holding a cup or pen unpredictable, the gift of muscle weakness that made a short walk nearly impossible, and then there are the gifts of relationship dysfunction, accompanying support system loss and financial uncertainty. I'll save you the details on the gift of lack of bowel control. I never did achieve that mythic "spontaneous remission" I had read so much about, and hoped for, back then. So that is not what remade my life, and it is certainly not what enriched it.

In those first years of living with autoimmune disease, I first refused and then reluctantly came to terms with the fact that illness, for me, was not only too often distressing, it was too often distinctly disabling. My new role of "patient" was profoundly uncomfortable, especially as I had constructed a rather narrow identity complicit in tacitly espousing "compulsory able-bodiedness" (McRuer, 2006). In living with chronic illness, I came to understand my own dialogue of self-worth—my own self-conception—as unwittingly ableist. But I do not believe such a disproportionate investment in able-bodiedness is an inevitability of living much of one's life as normatively nondisabled. In fact, we have a collective responsibility to refuse compulsory able-bodiedness, and I am buoyed in witnessing instances of resistance. But the reality of chronic illness is that it is disruptive and too often persistently so. It defies traditional biomedical understandings of disease because "chronic illness is about being both sick and healthy—at the same time" (Moss & Dyck, 2002, p. 14). Such a reconceptualization suggests that the protracted nature of chronic illness must be examined in relation to dominant discourses that continue to understand disease most often as acute, but not ongoing. Given that I was living in dissonance, simultaneously well and unwell, I had a new awareness that I had as much to unlearn about disease as I did to rethink how illness and disability were now an ongoing part of my life.

Increasingly, what I desired was not the rejection of disability but the embrace of critical disability studies as a guide to living, theorizing and writing in my newly discordant body. Next, I wanted to find the academic literature that might theorize chronic illness from disability studies frameworks, and if I could not find that scholarship then I wanted to write it. If crip theory can bring concepts such as "compulsory abled-bodiedness" (McRuer, 2006) and "compulsory heterosexuality" (Rich, 1980) together, I was seeking to understand not only what this might say about my own identity but about how to understand chronic illness through such a mode of theorizing. When I had first needed it, queer theory had provided me with a useful frame to understand my experience of desire, and thus to destabilize categorical notions of "heterosexual" and "homosexual." I have long understood queer to function as so much more than a synonym for "lesbian" or "gay," and the subversive potential of queering sexuality remains. Eve Sedgwick's 1993 assertion that "what it takes—all it takes—to make the description 'queer' a true one is the impulsion to use it in the first person" (p. 9). With this knowledge, why was claiming "crip" proving so difficult? Then, it was much more complicated than a diagnosis of chronic illness might suggest.

At that time, during active autoimmune disease, unlike many people with disabilities, I was sick and unsure if I would ever be well again. I lived with enormous uncertainty where the future was concerned. In those early years of truly struggling, ironically, others did not recognize me as ill, and I certainly was not understood to be a person with a disability. Because my illness was seemingly "invisible," although I experienced both physical and cognitive impairments, I felt written out of disability culture because I did not see my experience reflected in the images and words with which I was engaging. When I happened upon the term "dissonant disabilities" to describe chronic illnesses, like Driedger and Owen, I became further convinced that chronic illness requires study not only from disability frameworks but demands articulations about the lived experience of ongoing pain and fatigue. Often, this research and writing takes place in the context of being rendered invisible as a person with a disability. Overwhelmingly, I also came to understand that the best people to do this scholarship are those living with chronic illnesses, not because other researchers are unable to uncover the realities of dissonant disabilities, but because I came to value reading work that was as disruptive, unpredictable and unruly as the bodies and minds from which the work emerged.

I am reminded now, as I was stunned to learn back then, how little writing about women with chronic illnesses exists within the academic literature (Driedger & Owen, 2008). Importantly, Pamela Moss and Isabel Dyck's 2002 text, Women, Body, Illness: Space and Identity in the Everyday Lives of Women with Chronic Illness, makes a substantial contribution to the discourse. Here they propose a "radical body politics" to better understand how women with chronic illnesses negotiate identity formation and daily spaces in everyday life (p. 9). This theorizing emerged out of Moss and Dyck's qualitative study where they sought to re-embody—"spatially, materially, discursively, politically, (p. 10)"—chronically ill women "as ill bodies in a healthy society" (p. 10). Moreover, I want to suggest that any "radical body politic" of chronic illness demands an examination of how gender, sexual orientation, race ethnicity, socioeconomic status and age influence the diagnosis and treatment of disease; therefore, the difficulty of living with complex diagnoses. More importantly, this frame of "radical body politics" illuminates how biomedical definitions of chronic illness do not adequately give voice to the intensity of living with an unrelenting state of bodily uncertainty, nor how this affects identity formation. Here, then, is where I see the role of poetry, because as a genre it provides a space for the deeply subjective articulation of experiential knowledge. Poetry, too, is radical in that it often defies the very genre that is supposed to lend it definitional stability.

In re-examining why I chose to write to my experience of chronic illness through the genre of poetry rather than exclusively first person narrative, perhaps I should disclose that I have written to the experience of "performing patienthood" (Nielsen, 2014) in prose. In this piece, in part, I wanted to engage with Judy Segal's (2007) argument against personal narrative. Segal argues that while personal narrative remains the most available genre to write about difficult personal experiences, especially of breast cancer, we would all be best served in resisting this urge because too often we simply contribute iterations of "the standard story." In contesting this idea, I argue instead that restrictive cultural politics engender the telling of normative stories, and this is especially true in relation to mainstream breast cancer culture. Personal narrative, as a genre, is wildly diverse. Thus, in writing to my own experience of chronic illness, not breast cancer, I was attempting then, as I continue to do now, to put theoretical argument into narrative action. I wanted to resist the confessional mode as well as the standardized story, but I did not want to refuse engagement with the deeply personal. While poetry could be considered my "go to" genre that does not mean creating representations of chronic illness in poetic form is uncomplicated. For me, poetry provides a tangible site to explore the complexity that is crip experience because, as Petra Kuppers (2007) argues, "poems and their performance of meaning clasp something of crip culture's force" (p. 103). I wanted to tap into this force field to explore how very much in flux my health, ability and identity were. Here, the "instability of language" (Kuppers, p. 89) provides a way of understanding chronic illness as a dissonant disability. Dissonance, what some might describe as "unpleasant noise," is, to me, pleasing in its incongruousness and discordant sensibility. In the following long poem, "Symptomatic," I explore ways of thinking about symptoms of disease and, in so doing, resist the idea that biomedical language is the best way to name and describe.

Symptomatic

Tremors

First morning, thought: atmospheric. Unpredictable
currents, external. Jackhammer and roadwork—
caffeine? Thought fault line and quaking;
geologic, tumult. Thought semitrailer and traffic.
Thunder, galvanic. 1
Waited, felt chemical.

  • 1. Our skin, like so many other parts of the body, is a compromise hammered out at the negotiating table of evolution.

Onycholysis

Of finger, nail loosen-
ing from root. Of
rootless, itinerant. Of
roving, rambling, travel-
ing from nailbed. Of
peripatetic, nomadic.
Of drifting, slipping. 2

  • 2. Our skin is not perfect, but it does a remarkably good job. Our fabric doesn't wear out, our seams don't burst, we don't spontaneously sprout leaks, and we don't expand like water balloons when we sit in the bathtub.

Photophobia

Dissimilar to fear, irrational or otherwise,
not the pang of public places but can't.
Can't daylight or florescent. Can't sun. 3
Can't light-filled, luminous. Can't gleam.
Can't glimmer. Can't flash. Can't flume.
Can't bear to. Can't look away.

  • 3. Our skin has the amazing ability not only to serve as a protective shield against the damaging effects of sunlight but also to utilize some of that same sunlight to the body's vantage, by beginning the process of producing vitamin D right there in the skin.

Emotional Lability

Indifferently, indefinitely smashing
plates. Bull in glass house. Gauche,
tactless. Pressed between pages. Clinical,
capricious. Performance unremarkable,
unexceptional. Predictable. 4

  • 4. Skin is made up of layers with different physical and chemical properties. This laminar, or layered, construction gives the skin its resistance to abrasions and punctures and allows it to avoid absorbing most substances.

Polyphagia

Full: illusive. 5 An idea refusing
illumination—conjecture at best—
a failed twenty minute rule; theory
absenting practice, phenomena not
of this appetite, this stomach which begins
and ends, day in and day out—empty
as most questions.

  • 5. The skin’s outermost layer, the epidermis, shields us from environmental oxidants and heat, while it also resists water, abrasion, stains, microbes and many chemicals—a list of qualities that makes the epidermis sounds more like a revolutionary new type of carpeting than a natural material.

Muscle Weakness

Unpredictable, will forte. Will
force. Will elastic and tension. 6 Will
brawn, vigour. Strapping. Will
stature, form, shape. Will
build. Will certainty. Will depth.

  • 6. At least as far a primate skin goes, our epidermis is tough stuff.

Hyperreflexia

Firecracker, when? Kneejerk and
how! Flying from socket, out
of joint. 7 What knocks? What rasps?
What squirrels? What wasps?

  • 7. Probing beneath the epidermis, we reach the second of the skin's two primary layers, a thick layer of dense connective tissue called the dermis. This is the layer that really imparts toughness to skin.

Somnolence

Sleep ever present. Sleep: sandwich,
book. Sleep standing and timepiece. Sleep
wild onion and timbre. Sleep cello, brogue.
Sleep wingspan and jog and splendid. 8 Sleep
wink-wink and awkward. Sleep potato and
hum. Sleep soundly, sleep rough. Sleepily.

  • 8. The dermis is a composite tissue that gets its strength and toughness from a combination of collagen fibers and elastin fibers. Collagen acts just the way it looks, like tough little ropes of protein holding the dermis together. Interwoven with the collagen is a network of abundant elastin fibres that restore the skin to its normal configuration after stretching.

Hypertensive

Ask leaping heart to put down
roots, stay put. 9 Roost: now's
time to settle. Settle, settle, snapper
ticker. Animal, mineral, vegetable,
blood pumping organ grinder. Heart
on the brain, percussive in throat.

  • 9. Our sensitively expressive faces permit us to convey subtle nuances of information about what we are feeling. Through these expressions, we not only have compensated for lacking body hair that can fluff and bristle but also have developed ways to convey even more information.

Disability Culture Poetry and Poetics

Let me ask a different question: Is there space for poetry about illness, a poetics of chronic illness, within disability culture poetry? The answer is not straightforwardly "yes." I hear Petra Kuppers (2007) when she says she aims to investigate what might unite what she terms "disability culture poetry" and asks "Is it enough to call someone 'a crip culture poet' without naming that thing, that condition, that institutions use to label us with?" (p. 94). I, like Kuppers, wonder if it might be most generative to think about what unites us as, I too, want to leave the specificity of disability out of a discussion of who might be termed, properly, a "crip culture poet." I also wonder if crip poetry and poetics, might be aslant to disability culture poetry if crip culture parts ways with disability culture through actively destabilizing the binary that cleaves "able" bodies from "disabled" ones.

From the beginning, as I wrote and revised Body Work, more often unwell rather than well, I was aware that I may be able to illuminate this experience more effectively in poetry than prose. Prose felt pedestrian, a word when used as a noun signals ableism. Yet the dictionary reminds me that used as an adjective it means "dull" and "unimaginative." Chronic illness can be dull as much as it can be, at times, dreadfully unimaginative. But then, I did not have a heroic recovery and I have no triumph story to tell here. Perhaps that narrative arc would have made a more interesting story, especially to a certain audience. Even if I had access to that reality and narrative, I would resist telling that story. What I can relate in prose is a dull story that has some relationship to medicalized modes of understanding how to remedy disease and thus disability: My body was surgically forced into remission. Recovery took longer than expected and it remains incomplete. The other details are almost exhaustively as disinteresting as these ones. But what is important now is the strong affinity I feel with crip culture, and certainly with crip poetry and poetics. Is this enough? I recognize the disabling nature of chronic illness: my own, others, and I read it on the pages of Body Work. Certainly, the act of naming and claiming identity is serious business as I've explored. But rather than ask after the particularities of disability, why not question one's relationship to disability instead?

Kuppers asks in her inquiry into disability culture poetry if a certain mode of confessional writing practice, one that functions to reveal particularities of disability, need be an integral part of crip cultural poetics. She admits the squirm factor stirs in her when writing appears overly confessional, naming individual conditions, diagnoses, thus using "the doctor's language" (p. 91) to name and profess one's disability. Instead, Kuppers intervenes into this mode of writing and reading, naming her practice as a process when she says: "I am cripping the act of reading" (p. 95). This, for me, is an active practice of engagement, and one where the poetics of chronic illness might forge space within disability culture poetry. I risk the paranoid mode when I mention that in the notable anthology, Beauty is a Verb: A New Poetry of Disability (2011), the editors say they primarily chose "poets with a visible disability" (p. 15), stressing while HIV/AIDS or cancer fit within a social model of disability "they could be arguably classified as illness" (p. 16). As such, no poets were selected specifically because they were writing about chronic illness as disability. This decision, made explicit in the introduction of the anthology, continues to sting for it reinforces the view whereby disease is not directly understood as disabling and the politics of visibility render some among us disabled and others, not so much. I am also reminded, by Eve Sedgwick, that "it is sometimes the most paranoid-tending people who are able to, and need to, develop and disseminate the richest reparative practices" (p. 150). I mention this curatorial decision because it can be read to reveal an ongoing tension within disability studies even if, for some, there no longer seems to be a need to discuss where chronic illness fits within a discussion of disability. My solution is not to try and easily repair what remains in tension, but then neither is my solution to stay silent because I continue to seek a place within crip culture.

Kuppers seeks community through the act of reading disability culture poetry and, as she says, finds crip culture "in a poem as a field of forces, language in play, singularity" (p. 95). This intentionality resonates with Sedgwick's call for "reparative reading" as Kuppers's reading is motivated by curiosity and connection. "The desire of a reparative impulse …is additive and accretive" (p. 149), Sedgwick argues. Yet reparative readings are too often viewed with suspicion, contributing to a mode of scholarship Sedgwick asks us to reconsider. She maintains that reparative readings are smart readings but "The vocabulary for articulating any reader's reparative motive toward a text or a culture has long been so sappy, aestheticizing, defensive, anti-intellectual, or reactionary that it's no wonder few critics are willing to describe their acquaintance with such motives" (p. 150). I, for the record, am willing to admit my acquaintance with such a motive. In fact, I desire more than an acquaintanceship but a fully-fledged relationship with reparative reading. Sedgwick stressed that there is much to be learned from reparative reading practices: "What we can best learn from such practices are, perhaps, the many ways selves and communities succeed in extracting sustenance from the objects of a culture—even of a culture whose avowed desire has often been not to sustain them" (p. 150-151). In the context of this argument, the poetry of chronic illness is sustained by disability culture poetry even if disability continues to have an uneasy relationship with illness, particularly chronic illness—that seemingly invisible, discordant state—to be sure.

The following long poem, "Surgical Diary," was written with other poems of a similar theme, surgery and recovery, in mind. I wanted to play with any expectation that a poem about something as concrete as medical intervention be required to give intimate details of the diagnosis, the body or what seemingly was in need of fixing. This poem resists the notion that surgery fixes imperfect bodies because it cherishes imperfect things: a sweater without a button and a person that cannot sew the button back in place. It also refuses the idea that the "natural body" is one without modification or that a radical crip might refuse an attempt to cure pain, fatigue or other impairments. Whereas the theme of this poem might be a difficult one for some, and the dynamics of the surgical theatre are loaded with potential triggers, "To a reparatively positioned reader, it can seem realistic and necessary to experience surprise. Because there can be terrible surprises, however, there can also be good ones" (Sedgwick, p. 146). Perhaps the surprise here is in the reminder of how the skin aims to keep us whole, and when this protective barrier is broached, strives to mend us back together. The skin seeks to repair but never aims something as crude as the false promise of "cure."

Surgical Diary

Note 1 10

Send me a button; one button in
particular. A blue one missing
from something essential. (Shelter,
regeneration.) Inextricable from
being stitched together, skin
hemmed just so.

  • 10. Many anatomical specializations are responsible for the exquisite tactile sensitivity in primate fingers.

Note 2 11

That I have neither visible stitches
nor memory of what transpired in those
immediate moments before and after
remains, unreassuringly. Told twice,
three times: better not to remember.
Don't want to be sheltered from what
I can't know. (Some)body remembers.

  • 11. The skin houses the body's most ancient sense, touch.

Note 4 12
I will stitch the button back to
where its absence is clearly marked:
palimpsest. My body is dissolving
the threading that will remain
(un)knowable to me. This skin,
matrix-building. This body, that
is—and isn't—me, restructuring.

  • 12. The sensitivity of human fingertips is remarkable, and it is particularly acute in people who have lost their eyesight.

Note 5 13
That I function well without an organ
but don't have the know-how to stitch
a button back in place. Lacking how-to
to do a tidy job. And the theatre of incise
and create: divide, separate, divide, mobilize,
divide, identify, identify, divide, separate,
remove, reapproximate, reapproximate;
close skin with subcuticular stitch.

  • 13. Touch involves stimulation of the skin by mechanical, thermal, chemical, or electrical means and the resulting sensations of pressure, vibration, temperature, or pain.

Note 9 14
This thing, after the fact, of in/completeness,
bio/medically custom-made. And the
quiet drama of remission. (With/out story,
plot points.) Chemically buttoned up.
Necessarily in/complete, purpose-
fully so.

  • 14. The ends of primate fingers and toes are expanded into large, voluptuous digital pads that house sensory nerve endings, blood vessels, and sweat glands and are covered with fingerprints.

Note 7 15
Sew-thru stitch: thread, knot,
line-up button. Push, pull: repeat,
repeat, repeat, repeat, wrap, secure,
cut thread. Fixed? Subcuticular
stitch: throw anchor knot, bite
epidermis, pull, throw, pull, bite,
bite, bite, synch, cut thread. Variable?

  • 15. Fingerprints, known also as friction ridges or dermatoglyphics (literally, finger writing), appear on the palms of the hands and soles of the feet of many mammals.

Note 6 16
Breach: the body opened. The
quick of hunt-and-peck. Skin
sliced, sutured, and the cheap
and dirty of sterile marker.
Sequela: I'm off, ever so
definitely uncomely. Feeling
decidedly disheroic, uncyborgly;
try and rub away these affects. I
need to learn something as vital,
dire as a button stitch.

  • 16. Different styles of touching abound (think of all the different kinds of handshakes and hugs you've experienced), and they are often used to send social signals.

Note 3 17
The gown bloodied, my feet
bare. (As it were.) Couldn't
embody pain, was surrounded by it,
unable to dis/associate from/with it.
Thick and vocal and rank in the recovery
room. Vocal and rank and thick in the
ward. Rank and thick and vocal: coda.

  • 17. Only certain people can engage in certain kinds of touching–like a doctor performing a medical exam.

Note 8 18

I am (not so) self-contained; I am
essentially contained, constrained. Just stop
asking after the subjectivity of feeling; try on
a different question. Call on this volume
of bodywork; query skin; seek the subconscious
even, because I feel plum. I feel survivalist. I feel
saline. I feel metal and fibre. I feel nexus.

  • 18. When it comes to humans touching other humans, context is everything.

Certainly, we have choices in how to write and how to read disability culture poetry and poetics, what I am naming, and more specifically aiming to advance, crip cultural poetry and poetics. Kuppers suggests: "you can write as a critic through your own crip sensitivity, opening up to a reader a perspective of embodied reading in difference" (p. 93). Attending to embodiment, she argues, the performance of reading, "does not reduce the author to a condition, and neither does it fix the critic" (p. 93). The critic, too, is not fixed to a singular identity if reading is approached as an act of connection, and a seeking and eking out of community. Here, "community," too, is not reductively simple as crip culture is full of complexity and, at times, contradiction. Because Kuppers is attuned to "living in difference" she proposes that through "exploiting the dissonances, the imponderables" (p. 94) an embodied and critical aesthetic of criticism might engender various new connections. The next long poem, "Dermographia: (Repair)" queries less what is repair, and instead asks what makes repair?

Dermographia: (Repair)

g)

Not a matter of if
but when. The weakest linkage,
the organ most prone, the bone
most tender.

When might it?
When if it?
When?

[i]

Write a new story.19 A fresh skin script.
Write the body anew, afresh. Skeins of meaning,
a mess.

  • 19. Our skin talks even when we don't; it is not a neutral canvas.

> <

You didn't try to kill me only make my life harder.

					          You try to kill me only, make my life harder.

	You didn't kill me, only make life harder.
						You try to kill me, make my life harder.

		You didn't kill, only make harder.
						You try me, make my life.

			You didn't only make harder.
						You try me, make life.

				You only make harder.
						You try life.

					You make harder.
						You try.

						You make.
						Try. 20
  • 20. It also reflects the heightened human capacity to recognize self in others and to interpret and internalize the complexly coded visual signals that others present to us through their appearance.
					Make*.

*(make): poiesis.

h)

Here: embodied, inescapably so. Be a body. 21
Be a skin. Be repairing, renewing, rearticulating.

  • 21. Through the expressive functions of skin and body decoration, we have expanded the communicative potential of our bodies and reinforced the primacy of the visual sense in our sensory repertoire.

(Was so very.)

Here: relent, relent, relent. Slacken, supple. Sit still.

Here: tree, deciduous. Huge crows every morning.
So much time spent looking out; sceptical of easy.

Here: bone china, skin thin. Tea cup: save nothing
for good. Darn socks, save rubber bands and green pennies.

(Was busy.)

Here: shatterproof, fragile. Ever revamping, impatiently.

(Was enamoured, so much so.)

Here: whet.

i)

allopoiesis: process becoming other,
more than system itself. Becoming umbilical,
branch and star 22. Becoming rot and weft.
Becoming warp and rope. Becoming syntax,
polymer.

  • 22. When it comes to our skin–our protective envelope, billboard, and largest sensory portal–our scientific and artistic creativity knows few bounds.

[i]

autopoiesis: self-producing, -creating;
living system: more (or less) than machine. Becoming
dialectic: fire and lifeline, ice and leaf. Becoming protein,
organelle, membrane. Becoming mollusc,
cellular. 23

  • 23. New combinations of practical and esthetic considerations are likely to yield the most surprisingly changes in human skin-based communication, changes that will be startling in their rapidity and effect.

> <

Second guess. Strange. Games. Gotcha. Got game. Keep up. Keep up. Sink.

	Flurry. Fast. Fatigue. Faint. Butterfly. Frenetic. Lapse. So.

			Protect. Deconstruct. Shape. Choose.

				Yield. Shield*. Yen. Yes.

			Excess. 24 Success. Do dirty. Fight faulty. 

		Risk. Fumble. Stumble. Stutter. Shallow. Sallow. Iffy.
        
If. Wait. Farce. Fallow. Irregular. Shadow. Lengthy. Atrophy. Spent. Is. Way much.
  • 24. Ever more sophisticated and interactive virtual reality experiences will become part of our everyday routines, and entertainment based on the interaction of implanted devices with visual and auditory devices in the environment will become commonplace.

(shield): thyroid

[i]

repair = noun (verb)

restoration (return, renewal)
renovation (do up, tart up, tidy up, smarten up)
patch-up (settle, square, resolve)

[ii]

repair = verb (noun)

mend (solution, answer, resolution)
fix (quandary, mess)
seam (ridge, join, closure)

atone (assent) 25

  • 25. The deliciously acute sense of touch that we share with other primates will be rediscovered and stimulated in new and unforeseen ways.

[i]

repair = verb (verb)

recover (salvage, convalesce) darn (stitch, sew)

recuperate (reprieve)

[ii]

repair = noun (verb)

haunt (go)

j)

Hear: poplar and hush.
Windbreak and rush.

(Was indefatigable.)

Here: is lake, is loon.
Here: is axe, is melon.

(Was muscle.)

Hear: mosquito and frog.
Vigour and omnivorous.

Here: is wild dog, is dog rose.
Here: is rejoin, is recluse.

[i]

(Was sure.) 26

  • 26. Pressure, temperature, and conductivity sensors implanted under the skin and in devices next to the skin will also radically change the personal sphere of touch and touching.

j)

Here: skin's future, considered. Amorphous,
fraxelated. Retrofit and plucky.

(Scar tissue can move.)*

Here: body's trajectory, reconsidered.
Oddly earthy, myopic.

(Can be coaxed.) 27

Here: pliant, ribbony.

(Can be plied.)

Here: air, fallowing.

  • 27. Advances in treatments for damaged or diseased skin will be dramatic, but they will be overshadowed in the public arena by new ways of enhancing the skin's appearance and making it into an ever more dynamic surface for the communication of experience and aspiration.

i)

(Can become, tangible.)*

[i]

*(dermapoeisis): skinmaker. Nothing precious or
too pretty: stick and poke. Making skin: crudely
collating, ad hominem. 28 Epidermis, dermis:
keratin, collagen, elastin. Making, maketh;
cutaneous revision.

  • 28. Our consciousness of physical appearance and modern society's emphasis on our skin as a billboard for self-advertisement will only continue to grow.

(i)

*(dermographia): writing skin, (writing repair,
skin repairing), skin writing. Deconstructing
the (natural) dermis, the (natural) shell. Repurposing:
body talk, skin talk. 29

  • 29. The possibilities are both captivating and frightening and are likely to challenge our basic notions of self, physical presence, and personal responsibility.

Critically Crip?

In returning to the powerful potential of bringing feminist, queer and crip perspectives together, I would also like to propose that the very chronicity of impairments often present in chronic illness calls for the politicization of the inextricability of these identifications. Driedger and Owen reveal that while they situate their research within a social model of disability, not a medical one, as feminists and as women living with chronic illnesses, they do have critiques of the social model because "it does not quite fit the experience of people with chronic illnesses" (p. 8). In fact, why the social model of disability does not quite fit provides further space to explore crip cultural tension for "there is a tension between the social barriers encountered as a person with chronic illness and the actual physical or mental experiences of the body of the individual" (p. 8). This tension calls for further work to theorize the experience of chronic illness and, to continue to write chronically ill bodies and minds into disability studies. It is also a place where "crip" might be best understood as a critical orientation rather than the naming of a particular identity.

Driedger and Owen stress that making the social world accessible (through, for example, creating accessible building entrances) may benefit some women with chronic illnesses some of the time, "all the social transformation in the world will not rid us of pain and fatigue" (p. 8). Susan Wendell (2001), they remind us, levelled critique at a mode of theorizing that denied, or minimized, people with disabilities experience of impairments. Further, Wendell stressed there are important differences between "unhealthy disabled" and "healthy disabled." People whose "physical conditions and functional limitations are relatively stable and predictable for the foreseeable future" (p. 19) may count themselves among the "healthy disabled." But for those with chronic illnesses, where sickness does not resolve within say six months and, especially, where disease cannot be reliably "cured," live with diagnoses that do not kill the patient but often impart various impairments; these people may count themselves among the "unhealthy disabled" (p. 19). She reminds us that "fluctuating abilities and limitations can make people with chronic illnesses seem like unreliable activists, given the ways that political activity in both disability and feminist movements are structured" (p. 25). It might seem perfectly normal in these spaces to equate commitment to a cause with the expenditure of energy, "even to pushing one's body and mind excessively, if not cruelly" (p. 25). But for women with chronic illnesses, this excessive pushing "means danger, risk of relapse, hospitalization, long-lasting or permanent damage to our capacities to function" (p. 25). This is a reality I know too well. Thus, the external environment can disable those with chronic illnesses—feminist workplaces, activist and social spaces can all be disabling—but even accessible spaces are not places where all people are free from fatigue, pain and, even, various other impairments. And they are not free from the kind of ableism too often feminist spaces promote, even demand, by equating commitment with evidence of excessive expenditure of energy; and where activists themselves are reduced to a resource for social change rather than people with needs, wants and intrinsic desires.

I want to close, then, by directly engaging with Alison Kafer's Feminist Queer Crip, and to what her political relational model of crip theory might offer in theorizing chronic illness through disability studies frameworks. Specifically, I'm interested in Kafer's articulation of this hybrid model of disability because in such theorizing she is critical of the medical model and a strict social model of disability. She builds on social model frameworks but reads them through queer and feminist critiques of identity (p. 4). In this model, disability remains located in inaccessible buildings and discriminatory attitudes. Thus, disability is not a "problem" to be solved through medical normalization because what must truly change is an ideological system that designates normalcy, and deviance, to particular bodies and minds. Overwhelmingly then, what is needed is an ideological shift and political transformation in the service of social change, whereby disability is understood as a productive part of a shared imagined future. In Kafer's model, it is not that medical intervention has no place within a discussion of disability, it is that within her proposed model of theorizing, she argues not "for a rejection of medical approaches to disability as for a renewed interrogation of them" (p. 7). Kafer stresses that her articulation of a political/relational model "recognizes the possibility of simultaneously desiring to be cured of chronic pain and to be identified and allied with disabled people" (p. 6). This desire is a very real one for me personally. For crip culture is a place of fierce love, and such crip theorizing is the fuel to continue the transformational political work.

Kafer asks us to consider if claiming crip might be a way of imagining a future where disability is a "desirable location regardless of one's own embodiment or mental/psychological processes" (p. 13). She stresses, "claiming crip…can be a way of acknowledging that we all have bodies and minds with shifting abilities" (p. 13). In Crip Theory (2006), in a discussion of the gap created by appropriating Judith Butler's concept of "critically queer" in a disability studies context, Robert McRuer asked us to remember that the argument could be made that "everyone is virtually disabled, both in the sense that abled-bodied norms are 'intrinsically impossible to embody' fully, and in the sense that able-bodied status is always temporary, disability being one identity category that all people will embody if they live long enough" (p. 305). But, as he points out, a "virtually disabled position" should not be conflated with a "critically disabled" one. For me, a virtually disabled position can too easily be subsumed into an imaginary future where, from an ableist perspective, disability is figured as the one thing everyone is on guard against and seeks to fortify one's self from. A "virtually disabled" future then is a future few actively desire. A "virtually disabled" future does not easily pair with Kafer's imagined future where there is a future for disability. McRuer argues that a "critically disabled" perspective differs from this speculative realm of "virtual disabilities" because in choosing to occupy this critical position one must "call attention to the ways in which the disability rights movement and disability studies have resisted the demands of compulsory abled bodiedness and have demanded access to a newly imagined and newly configured public sphere where full participation is not contingent on an able body" (p. 305). As such, claiming crip must remain a critical position, as it opens the possibility for those without disabilities, or even illnesses or impairments, to claim the status of "crip." While such a move might risk the very appropriation of voice and experience that does not serve social justice, to claim "crip" critically could engender great ethical responsibility. Whatever the future holds, rather than depoliticize the articulation of "critically crip," let's ensure that any claiming of crip be embodied with criticality. Let's ensure that the status of "critically crip" remain political, radical in the way poetry can resist genre, a category that is intended to fix it into commonality—into meaning, into norms—and the very resistance of which engenders pleasure.

Works Cited

  • Bartlett, J., Black, S. F., & Northen, M. (Eds.). (2011). Beauty is a verb: The new poetry of disability. El Paso, TX: Cinco Puntos Press.
  • Driedger, D., & Owen M. (Eds.). (2008). Dissonant disabilities: Women with chronic illnesses explore their lives. Toronto, ON: Canadian Scholars' Press / Women's Press.
  • Kafer, A. (2013). Feminist, queer, crip. Bloomington, IN: Indiana University Press.
  • Kafer, A. (2003). Compulsory bodies: Reflections on heterosexuality and able-bodiedness. Journal of women's history, 15(3), 77-89. https://doi.org/10.1353/jowh.2003.0071
  • Kuppers, P. (2007). Performing determinism: Disability culture poetry. Text and performance quarterly, 27(2), 89-106. https://doi.org/10.1080/10462930701251066
  • Kuppers, P. (2006). Disability culture poetry: The sound of the bones: A literary essay. Disability studies quarterly, 26(4). https://doi.org/10.18061/dsq.v26i4.809
  • Jablonski, N.G. (2006). Skin: A natural history. Berkley, CA: University of California Press.
  • McRuer, R. (2006). Crip theory: Cultural signs of queerness and disability. New York: New York University Press.
  • Moss, P. & Dyck, I. (2002). Women, body, illness: Space and identity in the everyday lives of women with chronic illness. Lanham, MD: Rowman and Littlefield.
  • Nielsen, E. (2014). "Counternarratives of Breast Cancer and Chronic Illness: Performing Disruption, Patienthood and Narrative Repair." Special Issue: On Medicine. Performance Research. 19.4: 97-106. https://doi.org/10.1080/13528165.2014.947128
  • Samuels, E. (2003). My body, my closet: Invisible disability and the limits of coming-out discourse, GLQ, 9, 233-255. https://doi.org/10.1215/10642684-9-1-2-233
  • Sedgwick, E. K. (1993). Tendencies. Durham, NC: Duke University Press. https://doi.org/10.1215/9780822381860
  • Sedgwick, E. K. (2003). Touching feeling: Affect, pedagogy, performativity. Durham, NC: Duke University Press.
  • Wendell, S. (2001). Unhealthy disabled: Treating chronic illnesses as disabilities. Hypatia: A journal of feminist philosophy, 16(4), 17-33. https://doi.org/10.1111/j.1527-2001.2001.tb00751.x
Return to Top of Page

© 2016 Nielsen. All rights reserved. By author request, this article is excluded from Creative Commons licensing.



Copyright (c) 2016 Emilia Nielsen



Beginning with Volume 36, Issue No. 4 (2016), Disability Studies Quarterly is published under a Creative Commons Attribution-NonCommercial-NoDerivatives license unless otherwise indicated. 

If you encounter problems with the site or have comments to offer, including any access difficulty due to incompatibility with adaptive technology, please contact the web manager, Maureen Walsh. Disability Studies Quarterly is published by The Ohio State University Libraries in partnership with the Society for Disability Studies.

ISSN: 2159-8371