Michael Davidson: 'Cleavings: Critical Losses in the Politics of Gain'
[Reposted from Disability Studies Quarterly, Vol 36, No 2 (2016), where all sources are cited with pertinent footnotes. In the present version, however, I would like to stress the fusion of critical and personal voices by Michael Davidson, himself a pioneer in literature-based disability studies and a poet and essayist of considerable accomplishment. A major essay of his on “the poetics of disability” in the work of Larry Eigner can be found here and on Poems and Poetics. It also forms a chapter in his book Concerto for the Left Hand: Disability and the Defamiliar Body, University of Michigan Press, 2008. (J.R.)]
SYNOPSIS. Many of Emily Dickinson’s best-known poems deal with the loss of sight, based on her own experiences with temporary blindness in the mid-1860s, but they are less about the absence of sight than about how she experiences the limits of consciousness: “I could not see to see.” She probed the loss of sensation for what it could teach her about what is most familiar — and thus invisible. Using poems by Emily Dickinson and recent work in cultural and queer theory, this essay explores the fine line between “gain” and “loss” in disability studies. Using the author’s experience of sudden hearing loss, “Cleavings” argues that recent claims for “deaf gain” have vaunted possibilities of cultural inclusiveness to the exclusion of affective realms of frustration, loss, and failure that are seldom acknowledged experiences of deaf and hard-of-hearing persons. While endorsing the general thrust of deaf gain and its implications for the larger context of disability, “Cleavings” argues for a more critical understanding of loss in the politics of gain.
“… I realized that in the most containing and altered moments of illness, as often occurs with those who are severely ill, I came to know an incredible wakefulness, one that I was now paradoxically losing and could only try to commit to memory.” (Mel Chen)
“I could not see to see—”
I heard a Fly buzz — when I died —
The Stillness in the Room
Was like the Stillness in the Air —
Between the Heaves of Storm —
The Eyes around — had wrung them dry —
And Breaths were gathering firm
For that last Onset — when the King
Be witnessed — in the Room —
I willed my Keepsakes — Signed away
What portion of me be
Assignable — and then it was
There interposed a Fly —
With Blue — uncertain — stumbling Buzz —
Between the light — and me —
And then the Windows failed — and then
I could not see to see —
“I could not see to see.” The final line from Emily Dickinson’s famous poem 591, “I heard a Fly buzz — when I died” is about the transition from consciousness to unconsciousness, framed through the metaphor of sight. What is powerful about the poem is Dickinson’s understanding of the gap between sight as something one has and something one is. To see is to be able to organize the world into a coherent mass, to differentiate and parse passing phenomena into coherent patterns. The eyes become a transparent window onto the world. In Dickinson’s account, when one cannot see, it does not mean that she has lost consciousness but that she can no longer organize visual sensations, leaving the impression that the windows, not the eyes, have failed. In this moment she is permitted to see, as it were, through a glass darkly; rather than conform the world to recognizable patterns and codes, she confronts raw consciousness itself. The repeated “see” helps emphasize the filament-thin boundary between these two functions: doing and being, having and existing, seeing and knowing. In the opening of the poem Dickinson imagines herself in a funeral setting, experiencing the “Stillness in the Air — / Between the Heaves of Storm,” while mourners pay their last obeisance. She consigns her physical being — her “Keepsakes” — to oblivion and anticipates the appearance of some divine “King” that will transport her. But her genius is to understand that all of these rituals are for that portion of her that is “Assignable” by others, and in her transition into unconsciousness she has become the sign, not the keeper of the Sign, the seer not the possessor of sight.
Dickinson had her own concrete experiences with temporary blindness as a young woman. We know that she had several eye treatments in 1864 in Cambridge under Dr. Henry Willard Williams. These extended treatments were apparently painful, requiring the resting of eyes, eye drops and perhaps the puncturing of the cornea to reduce the accumulation of fluid. Many of her poems are about non-sighted experience (“The Soul has bandaged moments”  and “Like eyes that looked on waste”  being the best known), and although metaphors of blindness are common in all poetry, Dickinson had an especially acute awareness of what we might call the “agential” understanding of sensory experience. That is, she thought hard about what is gained from losing sight, not from the tragedy that it implies. She experiences what Mel Chen, in my epigraph, calls an “incredible wakefulness” that one experiences while living with illness or trauma. Rather than bemoan her fate, writing as many female poets of her generation did about death and dying, she probed the loss of sensation for what it could teach her about what is most familiar — and thus invisible.
I’ve been thinking a lot about these lines during the past month as I have gone progressively deaf. Even though I have taught Dickinson’s lines many times in classes, I’ve never had such a powerful understanding of her insight until my hearing in my one functioning ear began to fade and silence descended on me like a fog. I have bilateral tumors on each acoustic nerve, the result of a genetically inherited disease. An operation some years ago removed one of the tumors, leaving me with no hearing on the left side, and subsequent operations and radiation on the right side have left me with moderate hearing in the best of times. Adding to this, I have severe acoustic exostoses, calcium deposits from a lifetime of surfing and swimming in cold water, that have virtually closed my right ear. Apparently the tumor that was treated with radiation has come back to life, and the result has been several years of decreased hearing to the point that I can only make out the most basic sounds. Conversations have become difficult, and I live in what I experience as a padded world where everything is quiet and smooth, framed by a dull drone of tinnitus. My own voice is a monotone of nasals without significant distinctions, a semantic hollow whose dynamics are out of my control. I will discuss the ramifications of this experience momentarily, but I simply wanted to offer my own understanding of what it might mean to say, “I could not hear to hear.”
And I need to capture this moment now since, as Dickinson indicates, when one “sees” with the eyes one is not quite alive but living in the illusion that sight and hearing give us. The present tense sustains and elaborates a condition that a retrospective view consigns to a disparaged, transitory past. When we live in the full privilege of embodied life — when the body functions “normally,” and we say we are in “good health” — the windows seem to be working, and we ascribe variant conditions as some defect or flaw to be remedied. Temporary or late-onset disabilities upset the coherence of time and space and, most important, our relationship to others. Social relationships are confirmed by representation and repetition, reinforced by the material forms (texts, images, poems) through which consensus is achieved and cited. Achieving consensus is a key function of the aesthetic in Kant’s third critique: one has an opinion about the coherence of an object or scene that is subjective and unique which we then ascribe to others. The idea of the beautiful is tied to what we imagine others would find similarly beautiful and thus constitutes our larger sense of self, projected from the local body to the social body. When that illusion is broken, when the beautiful object has lost an arm, wears a brace, limps in spastic motion, one’s sense of bodily coherence is challenged and social forms based on such coherence become fragmented. For the larger purpose of aesthetic judgment is to confirm representation on others, to assume that we are “like them” and that they mirror what our bodies perform. When the body fails to perform in a representational regime it becomes, in Dickinson’s terms, “assignable” and can be made to “do” something “for” someone “as” something. The categorical imperatives of time and space that govern subjectivity may underlie consciousness but they are produced in specific temporalities and spatialities that for a blind or deaf person disable a self-evident world.
I remember vividly the first time I realized the extent to which space is an acoustic phenomenon. I was in Paris for a summer after my first operation and had lost my hearing on the left side. My brain had not adjusted to the hearing loss, and I was very unstable on my feet, even when walking on solid sidewalks. I remember stepping off a curb, having looked to my right without seeing any cars coming, but was almost run over by a driver on the left whose car I couldn’t hear coming. From that time on, I had literally “to look both ways” and not rely on audial location. Balance was also a problem. I found walking on curved or bumpy roads very difficult and tended to hug the walls of buildings, trailing my fingers along the wall to steady myself. I learned to sit on the left of people I wanted to talk with (and to the right of those I didn’t). As I get older, I notice that spatial positioning of the hard-of-hearing person in social situations is a common topic and subject of much senior-moment levity. Positioning, balance, judgment, walking — these are proprioceptive experiences that condition the body to the world, and to find them out of joint is to find oneself, to adapt Hamlet, out of time.
Being “out of time” rhymes with what Alison Kafer and Margaret Price, drawing from queer theory, have called “crip time” to refer to the variable temporalities of disability. Kafer notes how persons with disabilities require different modalities of time (to move between appointments, to take tests, to facilitate captioning and sign language interpretation), but she speculates on how such thinking might “lead to more expansive notions of both time and futurity.” To crip time is radically to rethink terms like “development,” “cure,” “progress,” “health,” and “incidence,” and to include those who can’t, for various reasons, “make it on time.” Kafer’s remarks about biofuturity are important in the context of Deaf culture, although many members of the deaf community do not identify with the term “crip” and its association with physical disabilities. At the same time and with the current debates about cochlear implants, medical interventions, and genomics, futurity for d/Deaf persons is being redesigned around an insidious return of neo-eugenic oralist ideology, masked as progress. Mainstreaming in education, a byproduct of section 504 of the 1973 Rehabilitation Act and the Americans with Disabilities Act, has contributed perhaps even more to this trend. The Deaf community is rightly worried about the loss of a vital cultural heritage, forged through sign language. Yet seeking to retain that heritage through a monolithic deaf nationalism based on signing places the struggle in an earlier minority model and doesn’t address the multiple constituencies of a post-nationalist Deaf culture that benefits from new technologies, social networks, and intersectional alliances.
A qualification here: by “post-nationalist” I don’t mean to imply, as Lennard Davis does, that we have come to a “post-deafness” moment. Deaf Culture is alive and well, spurred by a growing political movement around protests at Gallaudet University, first in 1988 and more recently in 2006, and by increased involvement in and accommodations to the public sphere. I would, however, suggest that we need a more nuanced approach to d/Deafness that recognizes the material conditions and cultural histories of capital ‘D’ Deaf persons while expanding small ‘d’ deafness to include the wide spectrum of people living on a deaf continuum. The latter would include congenitally deaf, CODA’s (children of deaf adults), late-deafened, hard-of-hearing, cochlear cyborgs, aging and disabled persons. Among these constituencies lies the large, unexamined question of affect: how it feels to live in a world where deafness is defined through loss as silence.
“A Plank in Reason”
As all the Heavens were a Bell,
And Being, but an Ear,
And I, and Silence, some strange Race
Wrecked, solitary, here — (340)
Dickinson brings the funeral inside — where, as she says elsewhere (in poem 320), “the Meanings are.” Instead of hearing the tolling bells through her ears, she becomes the bell; instead of not hearing, she becomes the Silence. There is no separation of sound and sensory organ; both are conjoined in the awe-filled word, “Being.” And where silence had marked the space between one peal and the next, it is now one with the sounds that give it form. Silence becomes her companion — Friday to her Crusoe wrecked on his island. But whereas Crusoe treats Friday as his cannibal servant and subaltern, she and Silence are joined in the same “strange Race.” What the non-racialized Subject experiences as an orderly funeral, with mourners “treading-treading — till it seemed / That Sense was breaking through,” Dickinson experiences as auditory exile. All distinctions by which Reason, language, and race are constituted dissolve into silence:
And then a Plank in Reason, broke,
And I dropped down, and down —
And hit a World, at every plunge,
And Finished knowing — then —
Surely one of the most vivid representations of what it means to “lose consciousness,” Poem 340 rehearses the stages through which sounds can no longer be organized around discrete pitches, meaning portioned between one phoneme and the next. The final, tentative “then” with its enclosing dashes enacts linguistically the end of knowing while leaving the syntax open to knowledges yet unimaginable (“And finished knowing [but] then …”). Dickinson embodies this tension between finality and unknowability by her slant rhyme, “down — /then —,” as if recognizing that the descent from Reason cannot be configured around a rhetoric of closure.
These lines are, among other things, about the sounds within silence or we might say the impossibilities of silence as an organizing metaphor for the absence of Reason. As Carol Padden and Tom Humphries say, being deaf has less to do with silence than with negotiations with hearing people’s expectations of what sounds are supposed to do. It is worth remembering that deaf persons up until recently were often thought to be without Reason because, presumably, without speech. Nor do all deaf people lack significant ranges of sound, and for partially deaf persons, there is always a residue of some acoustic material. In my present state of hearing loss, the sounds I hear involve a dull roaring that stems from bodily circulations of blood and nerves. Tinnitus, which I have sporadically, is now a dominant drone, invading my consciousness at all times. Sounds from the “outside” world have no pitch. Listening to the piano, I hear only the rhythm. There is no variation in tonality from note to note; C might as well be F♯. Timbre is swallowed into a version of John Cage’s prepared piano, a shattered, fuzzy pulse. An upward motif sounds the same as downward run. I suspect that Beethoven faced these barriers every time he banged away at the piano in his later years, “hearing” the theme in his head but being unable to reproduce it in his sensorium. But the harmonic and tonal complexities of the late quartets and piano sonatas were, to some extent, enabled by the cleaving produced by incipient deafness:
I felt a Cleaving in my Mind —
As if my Brain had split —
I tried to match it — Seam by Seam —
But could not make them fit —
The thought behind, I strove to join
Unto the thought before —
But sequence ravelled out of sound —
Like balls — upon a Floor — (867)
Once again, Dickinson articulates this productive quality of the Defamiliar. She experiences a “Cleaving” of consciousness that demands to be sutured, “Seam by Seam” (as someone who sewed her poems into fascicles or pamphlets, this metaphor links her compositional process to a specifically gendered form of consciousness). She tries to link the prior condition — before the cleaving — to the next, but “sequence ravelled out of sound — / Like balls — upon a Floor.” Whatever is splitting Dickinson’s “Mind” could be as simple as a migraine headache or as profound as a spiritual crisis or traumatic loss, but she figures it as a loss of sequence, of temporal organization, through a metaphor of randomly moving orbs. What she represents as her cognitive disability — and here I want to insist on the relationship of sensory loss to embodiment generally — provides her with a special insight into the meaning of temporality as a “space” one inhabits.
Dickinson’s sense of temporality as spatial (“the thought behind” … “the thought before”) may have something to do with her much discussed agoraphobia, her unwillingness to leave her father’s home later in life and her subsequent retirement to her upstairs room. Although there is considerable debate about the extent of her later reclusiveness, it seems clear that she avoided most large social encounters. Some have suggested a correlation between her experiences of temporary blindness and her subsequent isolation — as if she feared that her “bandaged moments” would recur in public and threaten her antinomian resistance: “What I see not, I better see — / Through Faith—” (869). Once again, she could not “see to see” within the public gaze, but in understanding this she was able to control aspects of her life that did not conform to the austere Protestantism of mid-century Connecticut Valley. One might concur with many feminist critics of Dickinson that her “refusal” was her form of creativity — or vice versa. To reject Victorian expectations of gendered, religious, and domestic proprieties was her way of living, as Adrienne Rich says, “on [her] own premises.” But we cannot advance her politics by excising cognitive and sensory issues. Or we need to read refusal through both a disability and feminist perspective to respect the terms that embody her refusal. Her room may have been a sanctuary from women’s social roles; her cedar box of fascicles may have contained her textual body. But she inhabited these bodies through periods of blindness, cognitive disability, and (perhaps) late in life, Bright’s disease.
In what has preceded I have been speaking about the ways that temporary disability — sudden injury, blindness, illness — offers a critical position within disability studies on the integrity of the impaired body. Temporary or chronic conditions complicate the usual way of thinking of disability as somehow stabilized around a condition rather than as a mobile, variable identity throughout the life course. We should be cautious about phrases like “temporarily able bodied” (TAB) or “able disabled” that universalize the disability experience around a putatively normal body in transition. Yet there must be room to consider temporary, transitional, and recurrent states of impairment as part of a continuum. Susan Wendell has observed that the standard division between impairment and disability, “the medically defined condition of a person’s body/mind, and disability as the socially constructed disadvantage based upon impairment [tends to] downplay the realities of fluctuating impairment or ill health” (165). In an attempt to place the onus of responsibility upon social institutions and legislation that create barriers to equal access, a constructionist version of disability may have marginalized the variable body in the process.
Or the variable sensorium. Thus far I’ve been speaking, autobiographically, of “hearing loss,” but I’m aware of what H. Dirksen Bauman and Joseph Murray have called “deaf-gain.” They are speaking of how, in the wake of protests at Gallaudet University and the emergence of Deaf Nation, a new consciousness has arisen around what it means to be culturally Deaf. The politics of deaf gain moves representations of deafness “from sensory lack to a form of sensory and cognitive diversity that offers vital contributions to human diversity.” I agree with this sentiment as it applies to a more general consciousness about deafness as a cultural rather than audiological form, but I want to retain something of the critical potential of “loss” for the purposes of gain. With the increased visibility of queer, racially mixed, intersex, disabled, and Deaf people into the field of cultural diversity we may miss the more invisible elements of embodied change that affect most people during their lives. As a culturally Hearing person with some limited knowledge of sign language I know that I could never, even as a fluent signer, be a member of the Deaf community. Nor would I presume to so-identify. At the same time I do not identify with the phrase “hearing-loss” and the medical and prosthetic culture that is growing around intervention.
This rather interstitial position with regard to deafness/hearing-loss has been an advantage to me as a person in the humanities with one foot firmly established in the hearing world but one foot testing the waters of Deaf World. The aesthetic tradition in which most of us in the humanities have been trained is based on the assumption that we “read” texts on pages; we inherit an “oral” culture; we analyze poems based on terms like “voice,” “rhythm,” “rhyme” and “line” and watch plays that feature richly embroidered spoken dialogue based on a written script. The idea of literary production signed on the body unsettles the very idea of literariness and the archival and philological traditions upon which much scholarly discourse is based. Including ASL as a second language for a literature requirement often requires defending sign language as a language and not a primitive gestural system, tied to English. Including ASL as a humanities requirement means defining literary production through technologies that included video, deaf clubs, performance, and film. This exercise, which is becoming increasingly common in academic environments, is a “gain” for students, but it also advances the university’s goals of inclusiveness and diversity beyond the more narrow frames of race, gender, and sexuality. Once deaf gain is extended to broader fields of experience and pedagogy, then literacy takes on new meanings. As Bauman and Murray show, bringing d/Deaf cultural forms into the larger conversation about diversity redefines language, expands visual learning, revises academic and scholarly discourse, reinvents ideas of space and the built environment, and forges alliances transnationally.
At the same time, for late-deafened persons, the gains of “deaf gain” are muted by new experiences of isolation and confusion within a new cultural identity:
Heavenly Hurt, it gives us —
We can find no scar,
But internal difference —
Where the Meanings, are — (320)
While recognizing the limits of configuring deafness as audiogical loss, I’d like to make a pitch for the inclusion of loss into the politics of deaf-gain that expands the cultural diversity Bauman and Murray propose. Here, I am taking a page from Jack Halberstam’s work on queer failure and those “ways of being and knowing that stand outside of conventional understandings of success.” Halberstam notes that in a heteronormative, capitalist economy, failure is not an option and that goals must include personal responsibility, independence and self-reliance. For queers, “failure can be a style” which stands “in contrast to the grim scenarios of success that depend upon ‘trying and trying.’” Drawing on “low theory,” Halberstam explores vernacular, avant-garde, zany, and subcultural realms that upset or carnivalize normative understandings of success. Most importantly, he notes that while failure “comes accompanied by a host of negative affects, such as disappointment, disillusionment, and despair, it also provides the opportunity to use these negative effects to poke holes in the toxic positivity of contemporary life.” These negative “effects” and “affects” prompt my qualification of the more utopian rhetoric of deaf gain since it (gain) may marginalize aspects of disability where interactions with able-bodied expectations are experienced as failure or error. In seeking a utopian inclusiveness, the politics of gain may avoid strata of emotional life on the spectrum of cultural inclusion.
The recent turn toward affect in critical theory offers a promising arena for considering the positive effects of negative affects. Partly as a response to the critique of identity and subjectivity posed by post-structuralism, studies of affect have attempted to return the body to cultural theory, not as the origin of emotional attachment but as part of a social matrix of other bodies and interdependencies. The writings of Brian Massumi, Sianne Ngai, Lauren Berlant, Patricia Clough, Eve Sedgwick, Silvan Tomkins, and others, explore an interstitial, mobile quality of affect, loosed from the psychoanalytic body and its drives and distributed among varying “forces of encounter” and intensities. Although “affect” is often equated with “emotion,” based on their shared Latin root (“affectus” or passion), theorists distinguish between the former, which is lodged in a subject and the latter which is defined by “intensity” (Brian Massumi) or “bodily responses” (Hardt). Most pertinent, given my remarks about queer failure, is the focus on “minor affects” or what Sianne Ngai calls “ugly feelings” — attachments and relations that fly under the radar of more familiar realms of aesthetic emotion (pity, terror) — which she defines as “a bestiary of affects … one filled with rats and possums rather than lions.”
Applied to disability, affect theory offers an (as yet unrealized) opportunity to extend the meaning of embodiment into a relational, transactional, and interdependent area. “[No] one has yet determined what the body can do … from the laws of Nature alone.” Baruch Spinoza’s formulation, often regarded as a founding statement of affect theory, offers an important challenge to the unitary Subject and the biologically configured body.
For all of its emphasis on embodiment and sensation, affect theory has paid scant attention to disability, nor to the many ways that disability theory has addressed the emotional registers that attend physical and cognitive impairment. Eve Sedgwick’s influential discussion of queer shame, to take one example, queries what would happen if an “unwashed, half-insane man” might wander “into the lecture hall mumbling loudly, his speech increasingly accusatory and disjoined, and publicly urinate in the front of the room then wander out again.” Such an event, as Sedgwick frames it, would “call the members of her audience into burning awareness of their own ‘individual skin,”’ while being able at the same time “to stanch the hemorrhage of painful identification with the misbehaving man.” As Tobin Siebers says of this example, shame as stigma produces a “queer emotion by which we put ourselves in the place of others” and is hence “ethically useful because it legitimates the question of identity without giving identity the status of an essence.” Yet, as Siebers concludes, “Sedgwick interrogates neither the shame nor the identity of the disabled man.” The use of a disabled body to illustrate a subaltern, abject, or sexually subversive identity is hardly unique to affect theory, but it is disturbing that a theoretical field dedicated to questions of attachment, relationality, and biomediation should assume an able-bodied model as the inevitable site for affective disruption.
All of which pertains to my qualification of “deaf gain” insofar as the phrase restricts the affective realm surrounding deafness to a forward-looking, positive agenda. Somewhat lost in this vision is the embodied experience of populations for whom loss of hearing poses a challenge, even trauma, to the lived reality of community, work, family, and solidarity. I come to this conclusion not out of any objection to the value of deaf gain but through an interest in adapting it to the kinds of intersectional alliances being formed through disability studies, a field in which the claims of gain and loss are often negotiated on more common ground.
Let me be more specific with reference to how deaf gain applies to disability gain more generally. In many disability memoirs, pivotal moments of negative affect often interrupt narratives that are otherwise inspiring testimonies to endurance and triumph. Tales of frustration with caregivers, insensitive doctors, short counters, poor signage, narrow bathroom stalls, intolerant merchants and staring bus passengers are the very stuff of disability life writing. Rather than see such moments as diversions from a trajectory toward fulfillment and self-reliance, I’d like to see them as fissures — cleavings — that are constitutive aspects of the disability experience. In Harriet McBride Johnson’s memoir, Too Late to Die Young the disability activist and lawyer describes a moment when her electric power chair breaks down, and she needs a passerby to push her to where she can phone someone to fix it. Someone else pushes her home. “Every time my chair conks, I go absolutely nuts. I can’t do anything on my own. I’m stuck. Like a helpless cripple! Whatever plan I’ve made — and I’ve always made some plan — gets derailed.” Or consider Nancy Mairs speaking of her frustration in public spaces:
“In airports I break down and weep. Other venues provoke me to passion of various disagreeable sorts: indignation when someone without a handicapped license plate has taken a reserve space; frustration when a shop crowds in so much merchandise that I can’t get my wheelchair down the aisles without risk of smothering in racks of finery or knocking down elaborate displays of fragile items; impatience when I’m trapped on the wrong-side of an unautomated door that nobody else in the world seems inclined to go through; panic and ironically, loneliness when large gatherings of people in enclosed spaces, like theatre audience, mill around them, waving and calling out to each other, without glancing down.”
Finally, in Georgina Kleege’s Blind Rage she writes an epistle to Helen Keller, remembering that, as she says, “I grew up hating you. Sorry to be so blunt, especially on such short acquaintance, but one of the advantages of writing to a dead person is there’s no need to stand on ceremony. … I hated you because you were always held up to me as a role model, and one who set up such an impossibly high standard of cheerfulness in the face of adversity. ‘Why can’t you be more like Helen Keller?’ people always said to me.” Going nuts, weeping in airports, hating Helen Keller — these are hardly shouts of independent assertion or solidarity so much as recognitions of contingency and vulnerability, embarrassment and frustration.
Such moments of affective disruption occur when the ontological meets the social, when resolve and intention butt into the built environment, when a plank in reason breaks and the body is revealed in all its clunky vicissitudes. Dickinson represents such moments as spiritual pain, “heavenly hurt,” but we could extend her religious rhetoric to what happens when a kind of social consensus can no longer be presumed and must be portioned out through senses of inadequacy. If these affective states become ancillary to an emancipatory narrative of progress and independence, they lose their ability to illustrate contingency. Moreover, they become detached from their political role that relates “internal difference” to political resistance. I am not saying that disability studies needs to return to a model of dependence and pathos but to acknowledge the lived experiences of loss, frustration, pain, and embarrassment in a politics of gain.
I want to conclude with a reflection on “side effects.” When I visited my audiologist about hearing loss, I could “hear to hear” his diagnosis about whatever was causing the condition. I was thus within and without the medical structure of deafness, given directions without the ability to fulfill what J. L. Austin calls the “felicity criteria” of a speech act. I was in a speech act situation without portfolio — a condition that goes by the felicitous double entendre, “patient.” The steroids he prescribed have had little effect, as it turns out; some days my hearing improves, and I revert to the hither side of the hearing spectrum. On other days, I experience no sound at all, turning inward, resentful and peaceful in equal parts. But steroids produce side effects that anyone who has taken them will recognize — sleeplessness, irritability, water retention, hunger, weight-gain. They also give one enormous energy and stimulus. Think of this essay as a side effect of steroid stimulation.
I mention side effects to suggest that disability is never a unitary function — that each condition is a complex or spectrum of effects over the life course. A person with diabetes may also be obese, may have heart problems or blindness. A person with hemophilia often lives with severe orthopedic problems, and many severe bleeders are HIV+. Persons with MS move in and out of exhaustion, pain, and normal mobility over their lives. They often take steroids for long periods of time that significantly alter behavior, mood, and sleep patterns. Many persons become deaf as a result of diseases (meningitis, mumps), accidents, or other forms of trauma. As I said earlier, in our rejection of the medical model of disability into a purely social version we may have forgotten the body that is rendered inert in the process. And we may avoid the degree to which prosthetics like medications, signage, captioning, wheelchairs, hearing-aids, braces, and public transportation are part of the body, not excrescences. To see them as mere appurtenances is to maintain the illusion of a biological phantom, a once whole body being propped up by scaffolding. I once was at a conference where a speaker attacked the evils of medicalization in cognitive disabilities and how Big Pharma was getting rich on prescriptions, doctors prescribing increasing amounts of antidepressants and keeping everyone in a state of permanent medicosis. Everyone in the room nodded approvingly, but a woman spoke up in the Q&A and said “that’s all very well for you to say, but if I weren’t on my meds, I couldn’t be here to hear you say that!”
By “side effects” I mean the residual aspects of disability that inform its core and that often play cameo roles in the disability memoirs mentioned earlier. Side effects of medication and medical procedures are components of that disability gain I have alluded to. They are considered the “bad consequences” of cure or remediation, but they need to be treated as part of the condition of cleaving, just as the tinnitus drone is part of my experience of deafness. We can rail against the medical profession and rehabilitation science, but in doing so we may deny experiential elements of complex embodiment that constitute the matrix of disability. In this context I would include caregivers, family members, friends, and, yes, medical professionals who make the private body a social body. It would be insensitive to call a caregiver a “prosthesis,” yet as such persons as Eva Kittay and others have said, [they] become part of the person with a disability, marginalized economically and culturally but also a component of a collateral dependency condition. Recognizing what Alasdair Macintyre calls the “virtues of acknowledged dependence” is necessary if disability studies is to intervene in a political reorganization of the body.
In this essay I have merged aesthetics and disability, personal anecdote and public statement, hoping to contribute to an intersectional understanding of disability studies. I’ve also retained the present tense, despite the fact that my hearing has fluctuated back and forth in the intervening period. Personal memoirs like those of Nancy Mairs, Harriet McBride Johnson, Georgina Kleege, Simi Linton and others have been foundational documents for disability studies not because they provide heartwarming stories of triumph and self-reliance but because they particularize the meaning of disability around specific conditions — cognitive, structural, juridical, and ethical. They provide exemplary cases by which public policy and understanding must proceed. At the same time, the fields of affect theory, queer theory, science studies, rights discourse, and new materialisms are expanding the meaning of disability beyond the social model. Finally, the current turn to the aesthetic, far from offering a retreat from the body into disinterested judgment, provides narratives of bodily and affective difference — a certain slant of light — at variance to those of pathos and triumph that often dominate public perception of disability. Emily Dickinson felt a “funeral” in her brain whose medical etiology we cannot know, but she left a record of what it felt like to become a social body falling through the body.