DSQ > Spring 2008, Volume 28, No.2

Disability Studies Quarterly Spring 2008, Volume 28, No.2 <www.dsq-sds.org> Copyright 2008 by the Society for Disability Studies

Journalist Jean-Dominique Bauby (Mathieu Amalric) served as editor-in-chief of the French fashion magazine Elle until a December 1995 stroke left him disabled by the rare condition "locked-in syndrome" at age 42. Cognitively alert and aware but profoundly paralyzed — with the exception of his left eyelid — he gradually learns to communicate through a series of blinks, silently conversing with his speech therapist Henriette (Marie-Josée Croze). At first depressed and wishing for death, Bauby soon becomes more accepting of his new bodily state, realizing that the faculties of memory and imagination can take him away from the confines of the hospital. Although physically constrained, he succeeds in emotionally reconnecting with his elderly father (Max von Sydow), estranged wife Céline (Emmanuelle Seigner), and two children. Previously under contract to write a work of fiction, he convinces his publishers to send an amanuensis, Claude (Anne Consigny), for recording a memoir of his new life. The resulting book, The Diving Bell and the Butterfly,1 premiered to high acclaim in March 1997, only two days before Bauby's death from heart failure.

A decade later, American painter and director Julian Schnabel has brought this true story to the screen as his third feature film, which has been lauded with praise and awards at numerous international festivals. (It should be noted that the real-life Bauby was previously profiled, shortly before his death, in Jean-Jacques Beineix's 1997 short TV documentary Assigné à résidence.) Schnabel's film manages an emotional poignancy without resorting to maudlin sentimentalism or tired stereotypes. Mathieu Amalric's performance as Bauby is also quite striking, primarily consisting of one very expressive eye, a post-dubbed inner monologue, and several flashback scenes. The film displays a significant amount of formal inventiveness, with roughly the first half of its duration shot almost entirely from Bauby's POV. While it is common for POV shots to appear intermittently in contemporary films, the physicality of the visual device is far more marked here: when Bauby blinks, the screen momentarily goes black; when his eyes tear up, the screen blurs out of focus, etc. As he first wakes from his coma, the viewer's knowledge of his new circumstances is restricted to Bauby's own consciousness. Able to hear his clearly enunciated inner thoughts, the viewer is ostensibly situated inside Bauby's head, looking out as he (and we) discovers the cause and extent of his paralysis. Once he finally gazes upon his own reflection midway through the film, he begins being increasingly shot from an external, third-person perspective. It is no coincidence that this shift away from the somewhat claustrophobic POV structure occurs shortly after he realizes that he must stop pitying himself and make the most of his new life.

As we can discern from the film, Bauby's narrative is not the mere literary(-cum-cinematic) equivalent of a "supercrip" story; he does not negate his disability as something to be triumphantly overcome in order to write a critically lauded bestseller. Although he may reasonably wish to escape the limitations of his own body, he understands that his paralysis has become a vital part of his identity. For example, during an early visit from one of his friends, he is advised to stay strong by clinging to his humanity, but Bauby (in his inner monologue) scoffs at the suggestion that it is already somehow endangered. It quickly becomes clear that his sense of humor has survived the stroke fully functional as well — as has his libido, sense of self-respect, and love for others. He wants to be treated equally, and reacts with cruel wit when one person casually refers to him as a "vegetable" or when a doctor patronizingly mentions, upon seeing Bauby transported by a nurse around his hospital room for the first time, that he does well "for a wheelchair [user]."

Bauby's difficulty in voluntarily making physical connections with his family forms much of the narrative core. We might say that "emotional paralysis" is the key disability metaphor here, given the stress upon his lost chances to communicate with ease. "Had I been blind and deaf, or did it take the harsh light of disaster for me to find my true nature?" Bauby ponders, clearly invoking the specter of disability as he contrasts his present condition with his glamorous pre-stroke life. (This contrast is emphasized through the film's musical cues, using hip, energetic rock music for the flashbacks and more simple, plaintive piano melodies for his scenes in hospital.) Reborn into a new disabled identity, he quickly acquires a more humble love of life, savoring the little pleasures and privileges that he had previously taken for granted. (With this in mind, one wonders if the film's cautionary message about underestimating one's physical and emotional capabilities will be as emotionally affective for some disabled viewers.) Although skeptical about Henriette's attempts to convert him to Catholicism, the only "miracle" that Bauby acknowledges is his late-discovered ability to faintly sing; the body itself becomes a site of wonderment, not a higher power.

Overall, the film presents a rich and even-handed portrayal of disability — but is that all we can or should say about it? The preceding paragraphs are something of a rote response, fairly characteristic of the output seen in much of disability film criticism. Combing through a given film for examples of "positive" and "negative" disability imagery often amounts to little more than an elaborate form of damage assessment, as if protecting a culturally unmediated kernel of "truth" that has merely been distorted by ableist ideologies.2 (Like Bauby, we cannot escape how our permanent embeddedness in language is the key to understanding the world.) The policing of cultural representations is vitally important in the growth of any liberation movement, but rhetorically speaking, it ultimately serves a conservative function, enforcing a certain political correctness upon not only the objects of its criticism, but also the formal structures of criticism itself.3 Much like the theoretical hurdles previously faced by feminist and gay/lesbian approaches to film studies, disability film studies has reached a critical impasse on the edge of a new wave in its evolution, ready to increasingly move beyond the tired binaristic arguments over positive and negative imagery. Such arguments tell us little about how disability might operate differently in film than in other mimetic arts like theatre or photography.4 While I am certainly not trying to devalue the diverse methodological approaches applicable for analyzing disability in film, a more medium-specific set of considerations seems crucial at this juncture to open up fresh avenues of exploration. There is presently too much emphasis upon what cinematic images mean, not what they can do — or in Foucauldian terms, too many readings of power as repressive, instead of productive.

The expansion of disability film studies at the present historical moment is particularly advantageous, in that many of the theoretical paradigms once holding sway in film studies have been splintered over the past two decades. For example, the tenets of Freudian-Lacanian psychoanalysis have been modified, challenged, or outright rejected (as in the work of Deleuze) — and since those theories are founded upon a medical model of neurosis, such dismantling seems all the better for the sake of disability studies. Disability film studies has the opportunity to bypass many of the stumbling blocks faced by film theorists in previous years, and instead turn to forms of analysis that resist high theory's ahistoricism and unnecessary obfuscation; the recent advancement of "crip theory,"5 with its willingness to follow the fluidity of desire and corporeality into politically incorrect terrain, is one of the most promising paths in this regard.

Disability film criticism too often seems to posit a stable relationship between cinematic fantasy and the politics of disability representation, not only imagining ableist ideologies to be passively absorbed by nondisabled viewers (the assumed audience of most films), but presupposing that those viewers inhabit impossibly stable spectatorial positionings and hegemonic identities that are not in constant states of (re)negotiation. However, all types of narrative cinema allow for the interplay of multiple, mobile, and even contradictory libidinal investments. Given the limited duration of any film, all identifications (whether with disabled or nondisabled characters) are merely temporary, infinitely splintered, and in constant flux, able to flow into multiple characters simultaneously, almost as soon as they appear onscreen. Consequently, arguing in favor of films that allow for greater and more "realistic" identification with disabled characters is tantamount to arguing in favor of disability simulations — for such experiences provide only a temporary identification, quickly recuperable by normative corporeal standards, offering little (if any) deep insight into the sociopolitical realities of disablement. For example, in The Diving Bell and the Butterfly, Schnabel's extensive use of POV shots may encourage a strong identification with Bauby, but it does not prevent one from simultaneously identifying with the people Bauby is looking at, nor does it necessarily prevent a viewer from emerging from the darkened theater pitying Bauby's condition. Because the medium of cinema is historically predicated upon an aesthetic of exploitation,6 rendering all bodies (disabled or not) as spectacle, the subversive potential of identification alone remains questionable at best.

The primacy of embodiment is effectively disavowed by those disability scholars who use the social model of disability by displacing the site of disability away from corporeality itself. While the social model is useful in many regards, it neglects the place of people with disabilities, such as Bauby, who are not primarily disabled by social barriers or ableist attitudes, but by the body itself. It also perpetuates a sort of Cartesian mind/body split that manifests itself in a phobic distrust of bodily affect, frequently leaving disability film critics distancing themselves — and, in doing so, dissecting the objects of their criticism with the same critical/clinical gaze so familiar to people with disabilities — from cinema's unique power to affectively stimulate the body through a splintering of perception and identification.7 As patterns of light dancing on a wall, a film does not possess bodies of its own; rather, because of its simulacral nature, a crucial issue facing disability film studies is the tangibility of our own bodily responses to such inextricably hyperreal spectacle. A more inclusive methodology for analyzing disability in film would account for the powerful links between perception and bodily sensation that ultimately make our own corporeality a formative part of the spectatorial experience.

Accordingly, what is most fascinating about The Diving Bell and the Butterfly is how, despite the disjunction between body ("diving bell") and mind ("butterfly") spelled out in its title, its cinematic incarnation attempts to collapse those same categories. The film's multitude of POV shots (especially in its early scenes) extends beyond merely establishing a strong identification with Bauby; instead, it powerfully decenters "normal" perception in ways that self-reflexively foreground cinematic spectatorship itself. (It would be inaccurate to assume that this POV structure entails an especially "realistic" depiction of disability, because such stylistic innovation continually reminds us of its own constructedness — but with no less affective results.8) The critical/clinical gaze is inverted, generating the illusion that we are behind Bauby's eyes, sharing his thoughts as doctors poke and prod at him/us. However, the viewer is positioned not just in his mind, but simultaneously within his disabled body — as strongly emphasized by the physicality of the POV structure (e.g., the visibly registered "blinks"). A particularly telling example comes when, shortly after recovering consciousness, Bauby's right eye is sewed shut by his doctor. Despite the patient's frantic (but silent) pleas, the doctor applies the sutures, which are rendered in extreme close-up as the needle repeatedly pierces Bauby's eyelids and slowly draws them together, momentarily closing off his/our vision. (It is only afterward that the doctor takes the time to explain how the procedure was necessary to prevent sepsis.) While this brief scene seemingly illustrates the aforementioned titular disjunction between mind and body (since Bauby's physically unexpressed cries go unanswered), I would argue that the scene's sensual affect upon the viewer's own body — marked by challenging, even assaultive, but ultimately stimulating demands upon our perception — succinctly amplifies the film's wider melding of mental interiority and physical sensation. This conflation of mind and body is not dependent upon particular images (such as violence), but is remarkably similar to the effects of cinema in general, rooting our potential pleasure in the impact of spectacle upon the viewing body.

Bauby's family and friends draw upon their own life experiences as they attempt to empathize with his disability, comparing it to being held hostage, being unable to leave one's own apartment, etc. However, more appropriate than these pat comparisons is the metaphor of cinematic spectatorship, because, like a film viewer, Bauby mentally escapes his (immobile) body through fantasies, but is continually reminded of his corporeal form.9 This is especially emphasized in the abrupt conclusion of a fantasy sequence in which, lost in his reverie, his mental projections of himself overlap with remembered footage of a young Marlon Brando; suddenly realizing his mistake, Bauby snaps out of the daydream. The imagination's power to transform life into an aesthetic phenomenon is one of the dominant forces at work in Bauby's story — and its adaptation for the screen successfully transforms his perception of life so that the viewer's own perceptions are destabilized. Since the viewer has come to know Bauby's character so well before even seeing him from an exterior perspective, the third-person shots of him in the film's second half do not encourage the objectification of his disability, aided by the fact that he has himself recently resolved to avoid the pity game. Moreover, when he (and we) sees his paralyzed body for the first time, it has become strange to him — but reconcilable as he strives forward in his new life. Because of the film's prior rootedness in Bauby's very "physical" POV, when he sees his own body as strange, it is also, from an identificatory standpoint, the viewer's surrogate body as well. Perhaps, then, Bauby's feelings of corporeal estrangement can reflect back upon the viewing body itself, asking able-bodied spectators to question the "normalcy" of their own bodies. But if The Diving Bell and the Butterfly has the potential to so decenter perception, the challenges it conveys are accompanied by powerful appeals to love, equality, and creativity.


  1. Jean-Dominique Bauby, The Diving Bell and the Butterfly (New York: Alfred A. Knopf, 1997). Return to Text
  2. As Jennifer Hammett argues, the apparent truth or falsity of our representations/beliefs are, epistemologically speaking, equally unfounded because we can never escape language and acculturation (Jennifer Hammett, "The Ideological Impediment: Epistemology, Feminism, and Film Theory," in Film Theory and Philosophy, eds. Richard Allen and Murray Smith [New York: Oxford University Press, 1997], 249-250). Return to Text
  3. "Positive" images are as discursively constructed and politically damaging as "negative" images if they enforce "safe," non-threatening images of "good crips" that deny not only the flaws within any given social group but also the specific, potentially "incorrect" experiences of individuals. Return to Text
  4. A semi-embarrassed confession here: I haven't read Bauby's book. This means that I will be unable to observe changes that have occurred in the narrative's adaptation from page to screen, nor draw comparisons between the story's treatment in each medium. While this admittedly limits my access to the story's original incarnation, it was a deliberate choice made to demonstrate, for the sake of argument, a step back from the overbearing influence of literary studies upon disability film criticism. My focus is instead upon how the narrative works specifically in its cinematic form. Return to Text
  5. Robert McRuer, Crip Theory: Cultural Signs of Queerness and Disability (New York: New York University Press, 2006). Return to Text
  6. Paul Watson, "There's No Accounting for Taste: Exploitation Cinema and the Limits of Film Theory," in Trash Aesthetics: Popular Culture and its Audience, eds. Deborah Cartmell, I.Q. Hunter, Heidi Kaye, and Imelda Whelehan (London: Pluto Press, 1997), 72-73. Of course, particular disability representations do not have an inherent value or meaning, since the relative success or failure of a given film's "preferred reading" depends upon the context of its reception-hence the political potential of oppositional, camp, or "crip" readings. Return to Text
  7. See Steven Shaviro, The Cinematic Body (Minneapolis: University of Minnesota Press, 1993), 1-65. Because Shaviro's theories of cinematic spectatorship are based upon embodiment, my particular reading of The Diving Bell and the Butterfly is strongly influenced by his work. Return to Text
  8. Ibid., 43-44. Distanciation and estrangement do not necessarily produce disaffection, instead generating different kinds of affect in their own right. Return to Text
  9. This metaphor seems all the more self-reflexive because the film's POV structure already positions viewers as sharing Bauby's perception, fantasies, and memories, but experiencing the accompanying sensual affects within their own bodies. Return to Text
Return to Top of Page