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Sharon L. Snyder and David T. Mitchell
isabled Romantic poet Lord Byron’s last, unﬁnished play, The Deformed Transformed (1822), tells the story of Arnold, who endures social derision for his multiple disabilities.1 The social context of Arnold’s oppression is the primary subject matter of the drama. Arnold’s initial critiques of social intolerance quickly give way to his own sense of his disabled body as grotesque. Byron’s hero opts for suicide in order to escape his torment. Just as Arnold is about to impale himself, a “dark” Stranger arrives with an offer: the exchange of his disabled body for the apparently ideal — but actually ﬂawed — body of the Greek war
We are particularly indebted to those artists, activists, and scholars who participated in the making of our documentary video, Vital Signs: Crip Culture Talks Back. We thank William Elison for his invaluable copyediting and Carol A. Breckenridge for providing forums for scholarship on disability studies. Finally, we thank the students in our graduate seminar on “Disability in the Movies” at the University of Illinois at Chicago for the intellectual stimulus they provided during our composition of this essay, and our friend Riva Lehrer for her devotion to disability art. 1. In most biographies, Byron is described as having a clubfoot, a rather amorphous nineteenthcentury medical classiﬁcation. However, contemporary descriptions of the poet’s condition indicate that it was a more serious disability than this archaic diagnosis might suggest. In Byron’s Memoirs, Samuel Taylor Coleridge quotes Mary Shelley’s observations about his physical demeanor: “A malformation of one of his feet, and other indications of a rickety constitution, served as a plea for suffering him to range the hills and to wander about at his pleasure on the seashore, that his frame might be invigorated by air and exercise” (Watkins 1822: 46). More recently, Phyllis Grosskurth, following the work of Denis Browne, has laid the groundwork for a more speciﬁc diagnosis that is, we would argue, similar to some forms of what is now labeled cerebral palsy. Byron walked with a “sliding gait,” and his “congenital deformity” was conﬁned to his right leg, which “curved inwards, and was so stiff that it impeded the movement of the ankle” (Grosskurth 1997: 25).
Public Culture 13(3): 367–389 Copyright © 2001 by Duke University Press Film stills © Sharon L. Snyder and David T. Mitchell
hero, Achilles. Arnold jumps at the opportunity, even though he believes that he must barter away his soul in exchange; he is, after all, like Byron, a student of Goethe’s Faust. After transforming the “deformed” Arnold’s body into the shape of Achilles, the Stranger announces that he plans to accompany the protagonist while taking the form of his rejected body. The “deformed” body thus shadows the “ideal” body’s pursuit of an unrestricted physical life. In this way, The Deformed Transformed illustrates the dependence of epistemological operations (and heroic traditions) on disabled bodies: the able body cannot solidify its own abilities in the absence of its binary Other. In the end, Arnold’s acquisition of an “ideal” body gains him little more than an insufferable ego and an obliviousness to the existence of diverse bodily forms across human populations.2 We begin with Byron’s The Deformed Transformed as an allegory for the efforts of U.S. disability studies ﬁrst to disengage from, and then to re-engage with, disabled bodies. In the drama, rejection of the apparently visceral life of disability for the evidently social ideal of a “classical” and “able” body encapsulates the double bind that confronts those who inhabit disabled bodies: one must either endure the cultural slander heaped upon bodily difference or seek to evade the object of derision. Such erasures of disabled people have historically been achieved through such cultural “solutions” as institutionalization, isolation, genocide, cure, concealment, segregation, exile, quarantine, and prosthetic masking, among others. As a theatrical effort to destigmatize the disabled body, Byron’s play—much like research in disability studies over the past twenty years—aims to debunk the ﬁctions of desirability that invest the “able” body. In critiquing the presumed desirability invested in able bodies, disability studies has sought to destigmatize disabled bodies only by default. In the mid-1990s, U.S. disability studies returned to encounter the sloughed-off disabled body after the “perfectible,” able body had been rethought as a matter of epistemology, as opposed to biology. We argue that disability studies has strategically neglected the question of the experience of disabled embodiment in order to disassociate disability from its mooring in medical cultures and institutions. Although recently disability criticism has been calling for a return to a phenomenology of the disabled body,3 this
2. Byron’s play is analyzed at length in our essay “Unﬁxing Disability,” which will be published in a forthcoming volume on disability and performance art in the Corporealities: Discourses of Disability series by the University of Michigan Press. 3. As Kevin Paterson and Bill Hughes (1999: 598) argue, to surrender a discussion of impairment is tantamount to relegating disability to the status of nothing more concrete than an ideological remainder: “[While] disability studies had recognised the social nature of impairment. . . . it lacks the
return has been slow in coming. Like feminized, raced, and queered bodies, the disabled body became situated in deﬁnitive contrast to the articulation of what amounted to a hegemonic aesthetic premised on biology. Within this cultural belief system, the “normal” body provided the baseline for determinations of desirability and human value. The section that follows, “Abstracting the Body,” begins with a discussion of the advent of the normative body in medicine through an analysis of the theories of Michel Foucault and Georges Canguilhem and the documentary ﬁlms of Frederick Wiseman. Leading documentarians of institutions, these three have produced work critical of sterile ideals of the body based on statistical averages and on an investment in the diagnosis of biological differences as deviance. Such critiques have provided the fundamental premise of disability studies: the able body emerges as a narrow measure for the creation of discriminatory, human-made environments that elide the existence of biological and cognitive variations. Next, in “The Cultural Arena of Disability,” we examine the ways in which disability studies has expanded the analysis of the pathologization of disabled bodies beyond the walls of the medical institution and into an engagement with intrinsically social questions of human value and belonging. One result of this expansion has been to direct scholarly attention to the use of disability as a metaphor for social conﬂict in various artistic traditions. In the segment “Theaters of Repression,” we argue that as medical science strains to rein in the disabled body’s deviance, movies unleash nightmarish images of disability as a threat to social stability. In posing such an opposition, we analyze portrayals of disability in Tod Browning’s 1932 horror classic, Freaks, and Werner Herzog’s misguided political satire, Even Dwarfs Started Small (1971). Finally, in “Body Poetics,” we conclude with a discussion of the re-engagement with disabled embodiment in the poetics of disability performance artists.
Abstracting the Body
Re-engaging the Body
The authority the biological sciences have wielded over cultural constructions of the body in the late-twentieth-century West—instantiated in the United States by the hegemony of the medical-professional and rehabilitation-sciences establish-
conceptual tools to trace the patterns of embodiment as they are lived through the mutually incorporated experiences of impairment and disability.” In her book Claiming Disability, Simi Linton (1998) makes a similar point, calling for a return to a phenomenology of disabled bodies that can more accurately mine the experience of disability through meaningful, visceral language.
ments — has encountered challenges in recent decades from the academy in the form of alternative methodologies that position bodies as interdependent social entities. Theorists took issue with the established empiricist approaches to material bodies, arguing that to treat the body as a discrete object that could be rehabilitated or “cured” by modern medicine was to decontextualize it from the lived world. Such criticism gained urgency as bodies became increasingly subject to evaluative, rather than strictly diagnostic, assessments by a medical establishment ﬂush with cultural capital. In question was not so much the meaning of materiality itself as the observing professional gaze that classiﬁed and evaluated bodies within hierarchies of deviance. In response to the rising prominence of such medical disciplines as pathology and teratology in particular, theorists of the body sought to effect a rescue of the stigmatized body from its relegation to the status of a “defective” anatomy. As the preparatory work to disability studies, body theory helped to re-present the aberrant body as a contested ﬁeld of political meanings, and deviance became deﬁned as a subjective imposition upon neutral, divergently functioning organisms. In the 1950s and 1960s, a series of groundbreaking works sought to invert traditional medical and scientiﬁc approaches to identifying bodily pathologies. The method of scrutinizing the body was identiﬁed as a prurient activity practiced under the sanitized guise of empirical objectivity; institutions such as clinics, hospitals, and medical schools were criticized for their complicity in the historical sequestration of the disabled body. In other words, theorists of the body sought to invert the traditional power dynamic of the medical gaze by situating the institution, in place of the body, as an object of scrutiny. In the new methodology’s tactical inversion, the gazer became the gazed upon. Among the most inﬂuential of these works was Michel Foucault’s study of the rise of medical institutions, The Birth of the Clinic: An Archaeology of Medical Perception. Foucault argued that as the architecture of the medical establishment took shape at tangible cultural locations — clinic and hospital, treatment room and surgical suite, amphitheater and bedside—the object of its gaze (namely, discrete human bodies) grew increasingly abstract. Speciﬁc symptoms became subsumed within a general topography of diseases; bodies were partitioned among an array of specialties and subspecialties; the individual experience of any patient came to be regarded as extraneous to the purview of the physician as he (the holder of the gaze was, by deﬁnition, male) made his diagnosis and thus reinscribed the knowledge-base of his profession. In sum, the idea of “the body” as object gave way to that of “the patient,” which, in turn, gave way to a surveillance of “the pure order of disease” (Foucault 1975: 14). Such an evolution (or devolu370
tion) of the body within the ﬁeld of medicine made it increasingly subject to relegation to predetermined categories of deviance by physicians enabled to act as evaluators of difference — and thus as arbiters of pathology. The only thing disability signiﬁed was a failure on the part of organisms to realize their “full potential” as aesthetic and functional vessels. Consequently, with the advent of modernity, the articulation of bodily differences shifted from entries in a catalog of biological diversity — a medieval approach to the study of Nature 4 — to an objectifying taxonomy of deviance. “The patient ha[d] to be enveloped in a collective, homogenous space” that allowed mutable organisms to be ﬁxed within categories deemed relevant to the knowledge-base of medicine (Foucault 1975: 196). In the late sixteenth century, Montaigne (1971: 539) referred to “cripples” as emblematic of creation’s “inﬁnity of forms,” which God, “in His wisdom,” supplies as evidence of his inexhaustible bounty.5 In an effort that can be seen as parallel to Montaigne’s — if minus the religiosity — Foucault effectively critiqued medicine for artiﬁcially constricting the elasticity of organisms within its domain of expertise. The body became a static fact before the trained eye of the physician who would extract its visual data while refusing to acknowledge its activities within a wider social arena: “[diagnosis] gave to the clinical ﬁeld a new structure in which the individual in question was not so much a sick person as the endlessly reproducible pathological fact to be found in all patients suffering in a similar way” (Foucault 1975: 97). In other words, discrete bodies, with their speciﬁc characteristics, became processed within a medical catalog that re-presented those characteristics as typical expressions, or symptoms, of diagnostic conditions. In an ironic turn, the Foucauldian body found itself in the service of the medical catalog, rather than the other way around. In the United States, the inﬂuential scholarship of Foucault emerged contemporaneously with the criticisms of social management schemes that typiﬁed the intellectual activism of the Vietnam generation. One example was the critique of the medicalized body leveled in the work of U.S. New Documentary ﬁlmmaker Frederick Wiseman. From his initial Titicut Follies (1967) to the remarkable Hos4. The cataloging of physical anomalies and their attendant mythical meanings occupied physicians and philosophers during the Middle Ages. In his work On Monsters and Marvels, the preEnlightenment French surgeon Ambroise Paré gathered examples of deviance in human and animal physiques as evidence of biological diversity across species. See Paré 1982. 5. We discuss the importance of Montaigne’s inﬂuence on the popular understanding of disability in a chapter in Mitchell and Snyder 2000, “Montaigne’s ‘Inﬁnities of Forms’ and Nietzsche’s Higher Men,” in which we compare polar approaches to the meaning of disabled bodies in philosophical narratives.
Re-engaging the Body
pital (1970) and, most recently, through the course of his “Handicapped Series” — Deaf (1986), Blind (1986), Multi-handicapped (1986), and Adjustment and Work (1986) — Wiseman’s ﬁlms exposed the institutional apparatus that would reduce aberrant bodies to mechanical and inhumanly narrow entities. Of these ﬁlms, Hospital comes closest to the formulations of body studies in the way that it problematizes the putatively universal category of “patient.” As a parade of ailing patients interacts with medical administrators and physicians, the medical subjects persist in narrating their life stories despite the listening professionals’ requests for the strict, bodily facts of their ailments. One woman with hearing aids recounts her experiences as a refugee during World War II in Germany and relates them to her “American” ethos of trying to stay off welfare. Another man speaks of his sense of impropriety at being asked to undress so that a female physician can better assess his disease. A transgendered individual discusses his/her level of comfort with an ambiguous sexuality perceived from elsewhere as “freakish” and as an inability to “ﬁt in.” A woman explains her relationship to a friend who has been rushed to the emergency room above the insistent questions of a doctor who wants to know what kind of medication the patient takes for high blood pressure. Wiseman’s ﬁlm displays the exasperation of health care professionals as they seek to navigate their way through the ailing mass of humanity that arrives on the hospital’s doorstep each day. Ultimately, however, the viewer’s appreciation of professional frustration gives way to a recognition of the necessity of this “extraneous” information to those rendered anonymous within the medical domain. All of these stories help to contextualize the experiences of bodies in the ﬂuctuating and difﬁcult world beyond the medical institution. But the narrative accounts proffered by those who enter the institution are discounted as superﬂuous to medical analysis, whose purview must be limited to any symptom detectable within a body before it. By the conclusion of Hospital, the medical industry appears increasingly sinister even as the ﬁlm highlights its “helping” ethos. There is the apparatus of the profession — machines, uniforms, hierarchies, paperwork, rules and regulations — and there are the bodies that intersect with the apparatus.6 On the audio track, Wiseman inserts a sound akin to a functioning respirator chugging away in the midst of the myriad dissections of human pathos—as if there were a mechan6. Wiseman’s contemporary, Ken Kesey, also pursues a similar critique of institutions as tentacular organisms in One Flew over the Cuckoo’s Nest (1962). Kesey’s formulation of a medical “combine,” or processing plant, reiterates the 1960s depiction of institutions as mechanical beasts.
ical heart desperately beating somewhere in the recesses. What a viewer of Hospital comes to fear is this mechanistic approach to varied biologies — not the usual coldness of bureaucracies indifferent to individuals, but a discipline that sustains rote processes at the expense of the dynamic humanity it treats. One leaves the ﬁlm with a sense that the patients’ chaotic personal life stories provide the only relief from the monotony of the “cases” that they come to represent within institutional parlance. Those subject to these institutional processes narrate their lives as if to stave off their inevitable relegation to a pathological catalog. Operative here are not merely fears regarding diagnoses (although there’s plenty of that), but also a terror of categorization within a deﬁnition that one is powerless to combat—medical diagnosis threatens to usurp the body’s elasticity. Foucault had pursued an archaeology of “perception” as the privileged register of analysis within medicine in order to afﬁrm what medical historian (and Foucault’s dissertation adviser) Georges Canguilhem (1989: 239) depicted as the relinquishment of objectivity in the ﬁeld at the end of the nineteenth century: A norm, or rule, is what can be used to right, to square, to straighten. To set a norm (normer), to normalize, is to impose a requirement on an existence, a given whose variety, disparity, with regard to the requirement, present themselves as a hostile, even more than an unknown indeterminant. Canguilhem’s emphasis on adaptation over deviation situated the body as a historically contingent phenomenon. Bodies were not the product of averages, but rather interdependent vessels that shaped and were shaped by their environments. Within this formulation, the proper medical study of the body would be a concise description of organismic adaptive strategies. The norm thus becomes little more than a hostile imposition upon necessarily ﬂuctuating organisms. Canguilhem argued that anomaly offered medicine a more appropriate gauge than dysfunction because it surrendered the violence of evaluation that infused any notion of deviance. Rather than interpret bodily and cognitive differences in terms of their degree of deviation from a standardized norm, anomaly recognized difference as the neutral expression of a biologically diverse species adapting to the pressures of environmental and internal forces. By the late 1960s, a profound reorientation of conceptions of the body was under way in the academy. The new ﬁeld of body studies would critique the disciplinary penchant for evaluating deviance on a scale set by standards of civic and economic functionality. The “able body” had become a quantiﬁable ideal that provided for the subjection of all bodies to its ﬁctional standards. Although the
Re-engaging the Body
able body served as the quantiﬁable medical measure of functionality, its ﬂawed mimesis of any speciﬁc, lived body unmoored its hold in corporeality. Consequently, Foucault’s inﬂuence on body studies came about primarily through his ability to provide a working methodology for historicizing the institutional production of embodied subjectivities. Body theorists began to follow his lead in inverting the traditional operations of medical empiricism by positioning the able body as a phantom materiality. By identifying the medical gaze as an object of study, Foucault’s formulations became the basis for deﬂecting empirical practices back onto institutions and the professionals who staff them.
The Cultural Arena of Disability
With the advent of studies that demystiﬁed institutional ways of seeing as historically contingent practices, disability activists found a means for moving the political critiques of discrimination and architectural exclusion they had been conducting for decades into a viable academic format.7 Building on the work of Erving Goffman — who, in a move parallel to that of Foucault and Canguilhem, turned a critical lens on asylums and on the labeling of disabled bodies as “spoiled identities”—and following the lead of feminist, racial, and gay civil rights movements, disability studies developed a social model founded on the idea that disability was not embedded in defective biologies, but rather in faulty social structures. Disability studies pushed for a recognition of the ways in which bodies had been molded into formulaic vessels for stigmatizing public beliefs. Since disabled bodies had endured such a history of debilitating classiﬁcations, disability studies purposely refrained from formulating the embodied experiences of disabled people. This neglect was willful and strategic: it explicitly sought to leave an overanalyzed entity mercifully alone. Instead, the critical gaze was turned on the practitioners of physical, occupational, and psychological evaluations and on the institutions that authorized their gaze. Foucault’s analysis of the overdiagnosed body offered the ﬁrst recognition that the professional scrutiny of bodily differences threatens to overwhelm material bodies through its microscopic breakdown and perpetual analysis. Citing Johann Georg Zimmermann’s treatise of 1774, Traité de l’expérience en médicine, he writes: “Medical perception must be structured to look through ‘a magnifying
7. In “The League of the Physically Handicapped and the Great Depression: A Case Study in the New Disability History,” Paul K. Longmore and David Goldberger (2000) detail the growth of American disability activism during the ﬁrst half of the twentieth century.
glass, which, when applied to different parts of an object, makes one notice other parts that one would not otherwise perceive,’ thus initiating the endless task of understanding the individual” (Foucault 1975: 15). People with disabilities recognized the violative nature of this tendency toward overevaluation most viscerally. Not only had they endured hours of diagnostic scrutiny on medical examination tables (not to mention a representation in textbooks that replicated this process), but they had also been subjected to a variety of exclusive measures that marked the extent of their cultural participation: “ugly laws” barred their appearance on the streets; intelligence testing banned them from public educational settings; segregated education isolated them in institutions that denied them equal access to the privileges of their able-bodied peers; discriminatory reproductive expectations identiﬁed them as physical and cognitive forms to be eradicated from the continuum of varied human biologies; inaccessible transportation left them physically stranded in their homes. These discriminatory practices demonstrated that disabled people’s exclusion was the result of inﬂexible policies that rationalized cultural segregation. Consequently, disability studies has formulated the problem of the medicalized body in a manner similar to that undertaken earlier in body studies, taking up medical institutions (and the ancillary administering of diagnosis, sequestration, and case study) as the primary locus of its critique. The pathologization of human differences is theorized as an imposition on the body — a regulatory effort to standardize inherent dynamism. But while body studies provided a foundation for a more general model of critique around the categories of illness, health, pathology, and even bioethics, disability studies moves beneath these terms to encounter disability directly in the experiences of human populations which were merely referenced euphemistically by those more general terms. Disability studies narrows the focus of its investigation to the social implications for bodies deemed excessively aberrant. In doing so, scholars have expanded the domain of cultural understandings about disability beyond the walls of its scientiﬁc management. For disability studies, the disabled body is neither a matter of individual malfunction—as cast by medicine—nor an effect of the abstraction of the body within the health professions. Instead, disability translates into a common denominator of cultural fascination (if not downright obsession)—one that inﬁltrates thinking across discursive registers as a shared reference point in deciding matters of human value and communal belonging. In this emergent ﬁeld, the able body is no longer characterized as merely a false quantitative ideal, as it had been in body studies, but rather as an aesthetic product of cultural forces that oppress those categorized as disabled. This subtle
Re-engaging the Body
shift in emphasis allows humanities scholars in disability studies to extend the discussion of bodily deviance from the context of rehabilitative institutions to that of wider ranging cultural locations. For instance, Lennard J. Davis (1995) analyzes the role of institutions for the Deaf in the historical development of disability activism and community in eighteenth-century Europe. Martin Pernick (1996) analyzes the inﬂuential role of public health ﬁlms in the promotion of eugenics in Chicago prior to World War II. Through readings of nineteenth- and twentieth-century U.S. literary texts and cultural spectacles such as the freak show, Rosemarie Garland Thomson (1997) argues that disabled people’s bodies have been represented as unassimilable within a normalizing biological ideology that marks the disabled body as the inferior contrast to an able-bodied, white, masculine citizenry. Paul K. Longmore (1997) assesses television genres, such as disease-of-the-week movies and telethons, to dissect mainstream representations of disability as tragedies in need of eradication or overcoming. In our own Narrative Prosthesis (Mitchell and Snyder 2000), we theorize the pervasive utility of disability to literature in Europe and the United States by discussing the longstanding artistic recourse to disability as a staple feature of characterization. Disability studies scholars have also analyzed the opportunistic use of corporeal metaphors to emblematize societal weaknesses in literary and philosophical ﬁgurations of disability. Ultimately, these analyses of the pervasive dependency upon textual and visual representations of disability in various cultural media have forced a reformulation of a theory of marginality itself within disability studies. This is one site at which disability studies diverges from the approach established by other civil rights–based programs. While many minority movements have argued that their social devaluation occurs as a result of their marginal presence in representational media, disability studies has formulated an analysis of social depreciation targeting the perpetual recourse to images of disability in narrative and visual mediums. As a result, disability studies follows a ﬁguration of marginality as the expression of an “overheated symbolic organism” that conveys potent meanings as a result of its palimpsest-like discursive history (cf. Stewart 1993).
Theaters of Repression
The work of disability studies scholars consolidated the argument that bodily and cognitive differences were integral to various registers of meaning-making within culture. While the earliest research in the ﬁeld kept returning to a denunciation of three prominent literary ﬁgures—Shakespeare’s Richard III, Melville’s
Captain Ahab, and Dickens’s Tiny Tim—the growing body of historical research called for wider ranging methodologies. As with later developments in race and gender studies, disability studies outgrew its denunciations of stereotypes; instead, theorists began to argue that disability represented a deep-seated, yet uninterrogated, cultural conﬂict. If the able body proved a utopian ﬁction of abstract bodily norms, disabled bodies occupied the phantasmic recesses of the cultural imaginary. The different body was more than a site for public scapegoating — cognitive and physical aberrancies acted as reminders of Others in our midst who challenged beliefs in a homogeneous bodily order. Out of these efforts to elucidate the constructed nature of disabled bodies in history, disability studies set out to diagnose the investments of an ableist society in disability’s various incarnations. Cultural efforts to medicalize or domesticate disability effectively repressed the power of aberrancy to unmoor notions of the body as a matter of norms, averages, and deviations. Locating disabled bodies as rare examples of extraordinary deviance essentially cordoned off disability from the differences that characterize typical biological diversity. For disability studies, the impersonal was the political. Such a sequestration evidenced the mainstream desire to reduce the different body’s (or mind’s) ability to destabilize normative models of health. In fact, disability studies scholars largely refused to deﬁne those bodies or conditions that were disabling, opting in favor of an understanding of disability as: That in the body which exceeds deterministic efforts to predict a life trajectory. Following the work of Julia Epstein, we point out in the introduction to The Body and Physical Difference that the ill body and the disabled body are culturally distinct entities because “diseases ‘follow a course’ and therefore prove familiar and domesticated by virtue of a belief in their determinate status (i.e., the ability to conﬁdently narrate their future). Disability might be characterized as that which exceeds a culture’s predictive capabilities and effective interventions” (Mitchell and Snyder 1997: 3). The goal was to disrupt the seemingly objective knowledge of aberrant bodies, not through alternative readings of their material meanings— that would merely replace one interpretive system with another — but by reinvoking disability’s resistant qualities. This disruption came by way of unearthing disability’s long-standing historical associations with the grotesque or supernatural as a form of theoretical resistance. In The Telephone Book, Avital Ronell describes medicine’s resistance to an acknowledgment of disability’s discordant power as a “theater of [scientiﬁc] repression” (1989: 367). While medicine and the rehabilitation sciences situate disabled people within a “neutral” zone of dispassionate inquiry in which empiri377
Re-engaging the Body
cism disarms the body of its volatile potency (i.e., the sexual and political implications of voyeurism and the intimacy of evaluation), disability studies causes the ﬂip side of aberrancy’s cultural meaning to resurface: It will be my contention that the scientiﬁc imperative, the demand in the nineteenth century for an epistemologically reliable inquiry into the nature of things, derives part of its strength from the powerful competition represented by fascination for the freak and the occult. . . . Science acquired its staying power from a sustained struggle to keep down the demons of the supernatural, with whose visions, however, it competes. The repression of this terror produces the counterfeit tranquility of sound scientiﬁc procedure. Science is always an operation on horror, opening the theater of its repression. (Ronell 1989: 366–67) Ronell’s argument hinges on a recognition of empiricism’s historical achievement in diminishing the power of disability’s association with the occult in the social imaginary. Whereas the nineteenth-century freak show served to turn the prurient popular interest in things supernatural into a salable commodity, medicine’s ascent to power was partially tied to its ability to abate such efforts. Scientists pitted themselves against supernatural beliefs by seeking to demystify disability and other phenomena and, in turn, place the inexplicable within their control — the control of man-made systems of knowledge. Yet, despite this project of containment, Ronell points out, “horror” would inevitably resurface — in the popularculture guise of ﬁlm monsters, for example — to challenge all efforts at keeping the demons at bay. Thus, science’s attempt to domesticate disability fails, in an absolute sense, because disability’s historical alignment with the grotesque (that is, the belief in the mysterious power of an “unassimilable” difference) continues to reverberate into modernity. Ronell’s McLuhanesque thesis presents innovations in communications technology (see, for example, her analysis of Alexander Graham Bell’s invention of the telephone as a means of making contact with his hearing-impaired mother and wife, Eliza and Mabel) as having been animated by the desire to extend the limited capacities of the body beyond its preprostheticized condition. This effort to compensate for the human body’s inadequacies placed disability squarely at the seat of cultural innovation. Compensation for differences quickly metamorphosed into technology that extended and veriﬁed the insufﬁciency of all bodies. Thus telephones, invented to enhance voice transmission, extending the conversant’s ability to contact a Deaf Other, became universally adopted by middle-class U.S. households. The irony of the telephone (as of many other prosthetic inven-
tions) was that the Deaf populations for whom the device was ostensibly invented would ﬁnd it one of the least accessible mediums of communication in a hearing world. Into the present, ironies of access continue to abound, such as the automatic use of curb cuts by walkies and the rush into elevators of able-bodied people who want to avoid the physical effort of climbing stairs. But the disabled body does not serve only as the faulty body that prompts compensatory invention schemes. Disability also promises a longed-for access to the otherworldly, because bodily aberrancy has been historically interpreted as the material signature of a divine order. Throughout European history, the extreme physical marking inscribed by bodily excess or lack seemed to demand an explanation for its “unnatural” origins. Monsters and madness threatened the maintenance of an earthly order, but also bespoke a fraternization with the otherworldly; religion’s “cures” of “demoniacs” and “cripples” reafﬁrmed the Church’s contact with the Divine. Disability studies scholars have used the historical linkage of disability with the supernatural to expose further the coordinates of ideologies of the body. In ancient Greece, as Henri-Jacques Stiker (1999: 44) argues, people with disabilities were exiled because anomaly was interpreted as a sign of the gods’ dismay with the larger community; in Norse mythology, according to Lois Bragg (1997), certain divine ﬁgures were depicted as disabled as evidence of their sacriﬁce to the greater good of the worshipers; in medieval Europe, disabled people were held to share an intimacy with God that more mainstream society had surrendered (Stiker 1999: 82); in the Renaissance, disability was thought of as punishment for wrongs committed by the afﬂicted one’s parents (Huet 1998: 21); in modernity, disabling traits were interpreted on an individual level as signs of personal malevolence and criminality (Mitchell and Snyder 2000: 15); and so forth. A characteristic mixture of awe and terror can be identiﬁed as having informed the reactions of ableist social orders toward their disabled populations. Disability was placed in the role of mediator not only between material and linguistic orders, but also between earthly existence and inscrutable otherworldly happenings. The use of disability as a ﬁguration that harnesses the power of the uncanny is apparent, for example, in both mainstream and avant-garde ﬁlmmaking. In such works as Tod Browning’s Freaks (1932) and Werner Herzog’s Even Dwarfs Started Small (1971), the “miniaturized” world presented by the cast of shortstatured actors serves as a reﬂexive lens on the behaviors of normative adult worlds. In Browning’s ﬁlm, the story of Hans, who courts a “big woman” trapeze artist named Cleopatra, equates the emotional life of circus freaks with that of their normate fellow performers. As the object of Hans’s affections, Cleopatra
Re-engaging the Body
pretends to return his desire while plotting with her lover, the strongman Hercules, to kill him and steal his fortune. In identifying with the duped Hans, the audience assumes a position of critique with regard to the duplicity and violence associated by the ﬁlm with social norms of courtship. Yet in its misplaced efforts to humanize the freaks—“misplaced” in the sense that their inherent humanity is not for the ﬁlmmaker to bestow — Browning’s story also suggests that the chasm that divides freak from normate cannot be crossed. The viewer is left to contemplate the ways in which freak culture mimics normative behaviors and exposes their violence. However, because the freaks’ culture proves merely replicative of the world occupied by their fellow performers, it comes off as being mechanistic and unoriginal. While Browning believed himself to be offering a rarely seen glimpse into the lives of disabled people, he left his cast of “human monsters” emplotted within the narrative trope of revenge. Thus, while Freaks depicts the social rejection of people with disabilities as inhumane, it leaves more established myths—such as the oversexed nature of dwarfs and the desire of disabled people for revenge against the able-bodied — unchallenged. Beginning with the ﬁlm’s opening epigraph, which simultaneously argues that “the disabled” are the same as “us” (the normatively positioned viewer) while promising the ultimate eradication of disability by modern teratology, Freaks labors with contradictory impulses — both to normalize and exoticize its disabled acting ensemble. Werner Herzog took this contradiction a step further in enlisting short-statured people in the enactment of a microcosmic farce. Even Dwarfs Started Small depicts a political uprising of the infantilized short-statured and other disabled inmates of an asylum near Mexico City. As the administration of the asylum is taken over by its former prisoners, Herzog sets into motion a full-blown overthrow of the oppressor’s institution. However, the ﬁlm carries this narrative into a broad satire of 1960s-style revolution, proposing that those who are oppressed readily adopt the oppressor’s violent mechanisms of control. The anarchic dwarfs set ﬁre to plants, hang monkeys, and send a gas-powered vehicle running in circles as a means for Herzog to comment on the ultimate futility of resistance to despotic regimes. Ironically, according to Herzog’s black comedy — which was billed by promoters as a “land of reversed proportions”— dwarfs can become tyrants every bit as overbearing as those of the normate world they seek to overthrow. Disability studies diagnoses the social condition of disabled people as situated between these two cultural extremes — medical specimen and supernatural vision. There is no reference to physical or cognitive difference without a con380
scious or unconscious materialization of its historical meanings. Thus, like all material objects, disability comes to be constructed in a cathedral-like manner, in which competing cultural aesthetics leave their impression upon its surface. The project of re-engaging the body requires efforts to resignify a multitude of stigmatizing meanings assigned to disability throughout history.
Re-engaging the Body
By moving disabled bodies into a social and political context and away from their historical mooring as medical and supernatural oddities, disability studies transformed the understanding of physical and cognitive difference from that of malfunction within particular bodies to the scenario of a cultural production, writ large. Historical representations do not disappear with the passing of an era or cultural formation; they continue to manifest traces in our own, contemporary moment. But exposing the able body as the progeny of a quantitative ideal and debunking the historical attribution to disabled people of supernatural qualities were both projects that maintained disability studies in its preoccupation with the critique of immaterial bodies. Addressing the ideological phantasms disseminated by the nondisabled about disability created a vacuum with respect to our contemporary understanding of the difference that physical and cognitive variation actually makes. Even with scholarly efforts delimiting the ideological and constructed terrain of disability to build on before venturing into a more visceral discussion of “real limits” or “impairment,” the analysis of disabled bodies presents difﬁculties: 1. How does disability studies narrate the disabled body without replicating the static model of a diversity of biologies encompassed within disability communities? 2. Can the effort to theorize the difference that disability makes avoid recasting disabled experience as another landscape of voyeurism, equivalent to earlier freak show spectacles or objectifying photographs in medical textbooks? 3. Can the effort to humanize disability unconditionally be realized without adopting the leveling gestures of humanism? 4. Finally, can stories of disability be analyzed without recourse to the pathologizing discourse of interventionist medicine, on the one hand, or to the grotesque, on the other? In part, disability studies had devoted attention to the meaning of disability as the product of epistemologies of able-bodiedness in order to avoid replacing one
ﬁction of the body with another. But such a focus also conceded a historical lack: that of a sensual and sensory language to theorize the body itself. The theoretical diagnosis had been limited to an archaeology of institutional power that sought artiﬁcially to stabilize meanings of the body. To narrate a phenomenology of the body requires an approach that can capture its deﬁning elasticity — not as an established fact, but rather as a mutable, temporal, “ﬁrst-person” organism. Such is the domain of literature and art. It is in the performances and writings of disabled artists that disability studies has been able to return to a phenomenology of the body — not in the theoretical formulations of disability studies proper. Such a radical body of work has emerged in spite of the fact that even artistic practices have been reconstrued as “therapy” and “rehab” for the variety of humans deemed “special.” After all, rehabilitative dance, painting, and sports — with their interventionist (even clinical) rules of engagement — are implicated in a thirty-year history of redirecting the transgressive commentary of disabled peoples into “safer” forms of self-expression. Expressive art — as opposed to art therapy — came into existence only when an audience made up of members of the disability community could be projected into the future. Such a cross-disability audience had been traditionally courted by advertisements for such consumer goods as wheelchairs and hearing aids, lobbied by legal ads, and reassured by religions. But once the means of artistic production were seized by disabled artists to explain the cultural predicament of disability, the deviant body could be radically transformed into a vehicle for redressing its normative cultural assignment as a “dustbin for disavowal” (Shakespeare 1994: 298). In the United States, disabled viewers of television had been exhorted to protect their rights by political action groups such as ADAPT (Americans with Disabilities for Assistance Programs Today), Jerry’s Orphans, and Not Dead Yet, but rarely had disability-identiﬁed viewers been invoked as the ideal witnesses, or accomplices, in the staging of artistic commentary. As with the artwork of other minority groups and cultures, that of disability culture emerged from a brew of conﬂict and dissent (and issued from an effort to throw off the hospital bed blankets and confront spectators with the reality of bodily difference).8 In the wake of disability studies’ tarnishing of the able body as a false idol, the disabled body
8. In his ﬁrst ﬁlm, The Men (Fred Zinnemann, 1950), Marlon Brando casts off the blankets that conceal his paralyzed legs as his horriﬁed girlfriend looks on. The gesture, as replayed in the literature and performances of disabled artists, is aimed at mobilizing the shock value not only of the different body, but also of the viewer’s guilt over his or her feelings of revulsion.
that had been historically banished from public viewing (not to mention public discourse) could now be reprogrammed. As the armless performance artist Mary Duffy (1997) comments about the perceived “threat” her body presents to nondisabled onlookers, “Nobody ever gets the joke. But I like it. It’s my defense in a hostile world, you know?” The “defense” to which she refers is a card that she “pedals out” to those who would make a marvel of her ability to write with her feet: This card has been coated with a noxious substance. In twenty-four hours both of your arms will fall off. (Duffy 1997) Duffy’s inversion of the female disabled body’s meaning to her own beneﬁt turns upon the artist’s ability to resist her positioning as a “marvel” of cultural training or rehabilitative rescue. In her performance art, she identiﬁes the rampant medicalization within contemporary U.S. culture that would position her body as a “case history”: The words you use to describe me are “congenital malformation.” Those big words those doctors used—they didn’t have any that ﬁtted me properly. I felt, even in the face of such opposition, that my body was the way it was supposed to be. It was right for me, as well as being whole, complete, and functional. (Duffy 1997) Such an open rejection of patronizing efforts to see her body as incomplete challenges cultural beliefs that the disabled body must be augmented or aesthetically restored to a closer approximation of normative biology. The language intended to make her body less visible in its difference is revealed as a prosthetic “skin” no less encumbering than prosthetic arms — their purpose more aesthetic than functional. In her live performance, Duffy’s body references classical forms such as the
From top: Mary Duffy reclaims her body as “whole, complete, and functional” in her performance art; Cheryl Marie Wade tells of her experience as a live specimen in a medical teaching hospital; Wade performs her poem “Hands”; Carrie Sandahl dons a medical lab jacket to recount her body’s encounters with medicine and social stigma. All stills from Vital Signs: Crip Culture Talks Back (1997), directed by Sharon L. Snyder and David T. Mitchell.
Re-engaging the Body
Venus de Milo as her poetry recounts a personal history of social and medical encounters, in the process resignifying her body as “whole, complete, and functional.” To insist that the disabled body forgo prosthetic concealment unashamedly relocates disabled bodies within a continuum of biological variation. The poetry and performances of Cheryl Marie Wade invoke both the medicalized objectiﬁcation of disabled bodies and their historical association with the grotesque. “Sassy Girl: Portrait of a Poster Child Gone Awry” includes monologues that describe medical symposia where, as a young disabled teenager, she served as a medical exhibit while her body was showcased as a biological monstrosity: I’m fourteen. Doing time in this teaching hospital when the head honcho of surgery, Zeus, I believe he was called, decides to do a little show-andtell. . . . (Wade 1997) For Wade, the medical theater of case studies becomes a repository of her own horriﬁc memories until she overcomes the urge to cry in the face of this objectiﬁcation and begins to parody the medical practitioner’s litany of pathologizing descriptions. By refusing a passive compliance with the dehumanizing vocabulary of medicine, the disabled body steals the medical stage and rejects the terms of its professional reception. This mimicry of patronizing professional language proffers an entrance into an otherwise closed system of representation that would silence the disabled body. Such a strategy turns a silencing imperative into a productive commentary on the disabled body’s presumed passivity and obedience to authoritative taxonomies. As a further redress to the historical afﬁliation of disability with monstrosity, Wade’s poem, “Mine Are the Hands of Your Bad Dreams,” draws from mythological ﬁgurations of the body in order to identify a third space from within which to embrace bodies that would otherwise exist only in relation to their alliance with the disadvantaged. Mine are the hands of your bad dreams—ooga, booga— From behind the black curtain. Claw hands, the Ivory girl’s hands after a decade of roughing it Crinkled, puckered, sweaty, scarred A young woman’s dwarf, knobby hands That ache for moonlight. That tremble. . . . That struggle. . . . Hands that make your eyes tear.
My hands, my hands— Hands that could grace your brow, your thighs. . . . My hands, my hands. . . . Yeah! (Wade 1997) The conscious “outing” of disabilities in art runs counter to the social expectation that divergent physicalities should be concealed from view. Wade resigniﬁes an implied nondisabled viewer’s horror—hands of your bad dreams—and casts her poetic net wide to draw in a multitude of associations that clear the way for the many powers—experience, metaphor, service, touch, emotion—that compel her personal reclamation of “MY HANDS” by the conclusion of the poem. The condensed movement, from horror to isolated longing to the ﬁnal seductive embrace of her own desirability, powerfully replays a disabled woman’s rewriting of a social script that would leave no space for afﬁrming identity. Wade’s personal reclamation pioneers an alternative embrace of the disabled body as sexual and self-assured (even knowingly menacing) that evidences a fully cognizant subject in charge of the historical and contemporary terms of her own representation. In each of the art and performance pieces mentioned above, the speaking subject must come to terms with a monster of cultural making—what Duffy refers to as her “own inner critic.” The formulation of a disabled subjectivity arrives positioned between discourses of the monstrous and the medical. Yet, as Carrie Sandahl points out in the documentary Vital Signs: Crip Culture Talks Back (Sharon L. Snyder and David T. Mitchell, 1997), “being forbidden [whether by polite society or disability studies] from talking about our medical conditions is also a way of oppressing us.” The disabled body cannot simply be fashioned anew out of whole cloth because its cultural situation ﬁnds it embedded within objectifying and objectionable languages of the body. Donning a white medical suit that cites the history of medical interventions upon her body, Sandahl recuperates her disabled body by refusing to participate in the cultural demand to conceal natural and constructed differences: This piece acknowledges the way that I feel that people with disabilities are always situated within a medical discourse. That’s why I got the lab jacket and why it’s written in red to signify blood. And the fascination that people seem to have with a medical discourse of your body—as if it’s always written on your body whether you’re wearing it or not. (Sandahl 1997) By demarcating the topography of her body and assigning each of its identifying features to a corresponding medical practitioner or intervention, Sandahl’s body becomes more than the sum of its parts — disability is reformulated as the prod385
Re-engaging the Body
uct of organic and cultural adaptive strategies that allow the body to endure without acceding to the “predictions” that accompany interventions. Such a process of reclaiming the medically (and socially) authorized narrative of one’s body becomes the basis for disability art’s resigniﬁcation of the disabled body: not an erasure of the discursive terms that deﬁne one as Other, but rather an effort to invert the power of even denigrating terminology into a redress of social ideologies of difference. In Sandahl’s performance art, her medical suit pointedly captures questions of incomprehension —“I bet the Easter Seals can do something for you.” “Do you ever dream that you’re normal?”—in order to deﬂect the aggression behind such queries back at the public which formulated them. A parallel example is documented in the poetry of Eli Clare. Her memory of rehab training and speech therapy as a child with cerebral palsy recalls the repetitive practices that were supposed to lead her back to normative communication patterns. The narrator of the poem “Learning to Speak” tells us: “I practiced the sounds th, sh, sl / for years, a pianist playing endless / hours of scales” (Clare 1997). Yet, rather than merely memorialize the rote practices of rehabilitation, the poem turns on the revelation that the acquisition of language would prove to be a tool, not of a normalizing social order but of her own entrance into political action: “I had to learn / the muscle of my tongue.” Eli Clare’s poetry, like that of other disabled artists, reckons with the body as an instrument that must be trained to articulate the experience of disability anew. Although the language of deﬁcits, limitations, and pathologies saturates the social vocabulary that brings disability into being, an ableist culture’s discourse must be mastered while, simultaneously, a radical transformation of the relationship between materiality and meaning is engaged. The redeployment of disabled bodies serves as more than a tool of integration; it becomes a tool of art itself by reclaiming that which has been historically viewed as dysfunctional. Thus, disability studies and art have come full circle to reinvest the disabled body with a phenomenology predicated upon more than the rejection of stigmatizing assumptions. Like Byron’s play, disability studies ﬁrst divests able-bodiedness of its mythical aura of perfectibility and then reclaims the sloughed-off disabled exterior as a mantle of future possibility. Reclaiming disability, to alter Simi Linton’s phrase slightly, occurs at the historical intersection of the nondisabled body’s demystiﬁcation and the disabled body’s reintroduction as the more appropriate paradigm for a mutable humanity.
Sharon L. Snyder is an assistant professor in the Department of Disability and Human Development at the University of Illinois at Chicago. David T. Mitchell is
an associate professor and director of graduate studies in the Ph.D. in Disability Studies Program at the University of Illinois at Chicago. They are the authors of Narrative Prosthesis: Disability and the Dependencies of Discourse (2000).
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Bragg, Lois. 1997. From the mute god to the lesser god: Disability in medieval Celtic and Old Norse literature. Disability & Society 12: 165–77. Byron, George Gordon Byron, Baron. 1905. The deformed transformed. In The poetical works of Lord Byron, edited by Ernest Hartley Coleridge. London: John Murray. Canguilhem, Georges. 1989. The normal and the pathological, translated by Carolyn R. Fawcett. New York: Zone. Davis, Lennard J. 1995. Enforcing normalcy: Disability, deafness, and the body. New York: Verso. Deutsch, Helen, and Felicity Nussbaum, eds. 2000. “Defects”: Engendering the modern body. Ann Arbor: University of Michigan Press. Epstein, Julia. 1995. Altered conditions: Disease, medicine, and storytelling. New York: Routledge. Foucault, Michel. 1975. The birth of the clinic: An archaeology of medical perception, translated by A. M. Sheridan Smith. New York: Vintage. Goffman, Erving. 1961. Asylums: Essays on the social situation of mental patients and other inmates. New York: Anchor. ———. 1986. Stigma: Notes on the management of spoiled identity. New York: Simon and Schuster. Grosskurth, Phyllis. 1997. Byron: The ﬂawed angel. New York: Houghton Mifﬂin. Huet, Marie-Hélène. 1998. Monstrous imagination. Cambridge: Harvard University Press. Kesey, Ken. 1962. One ﬂew over the cuckoo’s nest. New York: Viking. Linton, Simi. 1998. Claiming disability: Knowledge and identity. New York: New York University Press. Longmore, Paul K. 1987. Screening stereotypes. In Images of the disabled, disabling images, edited by Alan Gartner and Tom Joe. New York: Praeger. ———. 1997. Conspicuous contribution and American cultural dilemmas: Telethon rituals of cleansing and renewal. In The body and physical difference: Discourses of disability, edited by David T. Mitchell and Sharon L. Snyder. Ann Arbor: University of Michigan Press. Longmore, Paul K., and David Goldberger. 2000. The League of the Physically
Handicapped and the Great Depression: A case study in the new disability history. Journal of American History 87: 288–322. Mitchell, David T., and Sharon L. Snyder. 1997. Introduction: Disability and the double bind of representation. In The body and physical difference: Discourses of disability, edited by David T. Mitchell and Sharon L. Snyder. Ann Arbor: University of Michigan Press. ———. 2000. Narrative prosthesis: Disability and the dependencies of discourse. Ann Arbor: University of Michigan Press. Montaigne, Michel de. 1971. Of a double-bodied child. In The complete works of Montaigne: Essays, travel journal, letters, edited and translated by Donald M. Frame. Stanford, Calif.: Stanford University Press. Paré, Ambroise. 1982. On monsters and marvels, translated by Janis L. Pallister. Chicago: University of Chicago Press. Paterson, Kevin, and Bill Hughes. 1999. Disability studies and phenomenology: The carnal politics of everyday life. Disability & Society 14: 597–610. Pernick, Martin. 1996. The black stork: Eugenics and the death of “defective” babies in American medicine and motion pictures since 1915. New York: Oxford University Press. Ronell, Avital. 1989. The telephone book: Technology —schizophrenia — electric speech. Lincoln: University of Nebraska Press. Shakespeare, Tom. 1994. Cultural representation of disabled people: Dustbins for disavowal. Disability & Society 9: 283–99. Stewart, Susan. 1993. On longing: Narratives of the miniature, the gigantic, the souvenir, the collection. Durham, N.C.: Duke University Press. Stiker, Henri-Jacques. 1999. A history of disability, translated by William Sayers. Ann Arbor: University of Michigan Press. Thomson, Rosemarie Garland. 1997. Extraordinary bodies: Figuring physical disability in American culture and literature. New York: Columbia University Press. Watkins, John. 1822. Memoirs of the life and writings of the Right Honourable Lord Byron: With anecdotes of some of his contemporaries. London: Henry Colburn.
Adjustment and work. 1986. Directed by Frederick Wiseman. Cambridge, Mass.: Zipporah Films. Blind. 1986. Directed by Frederick Wiseman. Cambridge, Mass.: Zipporah Films.
Clare, Eli. 1997. Learning to speak. In Vital signs: Crip culture talks back. Directed by Sharon L. Snyder and David T. Mitchell. Chicago: Brace Yourselves Productions. Deaf. 1986. Directed by Frederick Wiseman. Cambridge, Mass.: Zipporah Films. Duffy, Mary. 1997. You say words that I ﬁnd frightening. In Vital signs: Crip culture talks back. Directed by Sharon L. Snyder and David T. Mitchell. Chicago: Brace Yourselves Productions. Even dwarfs started small (Auch Zwerge haben klein angefangen). 1971. Directed by Werner Herzog. Anchor Bay Entertainment. Freaks. 1932. Directed by Tod Browning. MGM. Hospital. 1969. Directed by Frederick Wiseman. Cambridge, Mass.: Zipporah Films. The men. 1950. Directed by Fred Zinnemann. Republic. Multi-handicapped. 1986. Directed by Frederick Wiseman. Cambridge, Mass.: Zipporah Films. Sandahl, Carrie. 1997. Art-life performance. In Vital signs: Crip culture talks back. Directed by Sharon L. Snyder and David T. Mitchell. Chicago: Brace Yourselves Productions. Titicut follies. 1967. Directed by Frederick Wiseman. Cambridge, Mass.: Zipporah Films. Wade, Cheryl Marie. 1997. Sassy girl: Portrait of a poster child gone awry. In Vital signs: Crip culture talks back. Directed by Sharon L. Snyder and David T. Mitchell. Chicago: Brace Yourselves Productions.
Re-engaging the Body
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