In honor of Disability Pride Month and the 32nd anniversary of the Americans with Disabilities Act being signed into law on July 26th, I return to my “Disabled Lens” series with a* focus on The Diving Bell and the Butterfly. Unlike the focal film in my previous entry in this series, in which a character’s disability is more implicit, the experience of disability not only takes center stage in Diving Bell, but its portrayal also draws from a real disabled person’s account. In December 1995, journalist and editor of French ELLE Jean-Dominique Bauby woke up in a hospital twenty days after suffering an unexpected stroke — and found that his body was almost completely paralyzed. He could only blink his left eyelid. Doctors diagnosed him with locked-in syndrome, a condition in which a person’s mental faculties remain intact while most, if not all, of their body is paralyzed. Having signed a contract to write a book prior to his stroke, Bauby chose to dictate — with the help of his speech therapist and a ghostwriter — a memoir of his life before and after his stroke. The book, originally titled La Scaphandre et le Papillon, was released on March 7, 1997, and gained massive popular acclaim across Europe. Bauby died two days after his book’s release.
Albeit a dramatized and fictionalized version of real events, I find Julian Schnabel’s 2007 adaptation of Bauby’s memoir to be an intimate and thoughtful representation of disabled interiority and subjectivity and of how disability can complicate ideas of autonomy and freedom. Mathieu Amalric plays Jean-Do, as his friends call him (and as I will refer to him, to distinguish the character from his real-life counterpart), whose kinetic and glamorous daily life comes to an abrupt end when he becomes paralyzed and bed-bound after an unexpected stroke.
Interestingly, rather than capitalize on the story’s potential for tragedy by introducing us to Jean-Do before his stroke and then highlight the difference in his “quality of life,” Diving Bell introduces us to Jean-Do’s story by quite literally forcing the audience into his perspective. With a few very brief exceptions, the beginning of the film plays out through the lens of this extremely limited point of view, which serves to forefront Jean-Do’s subjective, lived experience. The angle of his — our — gaze is always slightly off-kilter, the subject of his focus always a bit off-center. Upon waking, everything in sight is awash with blurry grogginess, captured in affecting unsteadiness by cinematographer Janusz Kamiński. Even though Jean-Do cannot physically speak, we are privy to his train of thought. We are locked in with him. In a scene that is all the more effective for its graphicness, Jean-Do undergoes an ocular occlusion to prevent his right eye from drying out and going septic, and we are forced to endure the slow stitching of his eyelid right alongside him. We listen to his consciousness as he pleads, “Get away from me! Get away. Please! He’s not going to close my eye. Please don’t.” The effect of literally stitching the audience into Jean-Do’s perspective is less about the exploitation of his trauma — though, arguably, that’s at least part of it — than it is about nudging the audience into identifying with him. From Tod Browning’s Freaks and Thea Sharrock’s Me Before You to the myriad forgettable, fluffy, feel-good human-interest pieces that dot the media landscape, stories focused on disabled people and their disabilities are often less concerned with the people they’re ostensibly “centering” than with an exploitation and interpretation of disability constructed for non-disabled consumption. Whether disability is used to induce fear or self-satisfaction in audiences, stories such as these both depend on and encourage a sense of irreconcilable difference between disabled and non-disabled people. By aligning the audience’s introduction to this story with the beginning of Jean-Do’s journey in acclimating to this new, different life, Diving Bell minimizes the opportunities we get to remind ourselves of the differences between us and Jean-Do. Though audiences are free to interpret Diving Bell as a tragedy of acquiring impairment and/or an inspiring tale of what a person can do “despite” their disability, this interpretation negates the film’s efforts to immerse us in Jean-Do’s thoughts and construct his character as a dynamic individual with desires and flaws, rather than merely a tragic/inspirational object.
With the audience stitched into Jean-Do’s perspective and Jean-Do gradually feeling out the edges of this new state of his life, both parties are freed from the limited point of view of Jean-Do’s left eye. What initially might come across as the retiring of a quirk of Diving Bell’s visual storytelling is actually the outcome of a revelation. After processing the grief that comes naturally as a result of massive and traumatic change, after the jarring invasiveness of his ocular occlusion, after grappling with the isolation of being trapped in his “diving suit” of a body…there comes a reconsideration. Jean-Do undergoes the arduous process of learning a new method of communication, which grants him the ability to directly engage with the world around him. Because this method is time-consuming and requires the active participation of a second party to help spell out Jean-Do’s sentences, it is not what one would typically think of as freeing or an exercising of autonomy. However, the fact of the matter is, when one disabled, “typical” goes out the window, and it becomes necessary to renegotiate one’s understanding of freedom and autonomy. Is the spelling method much slower and more involved than speaking with one’s voice? From a non-disabled perspective, yes. When Jean-Do’s speech therapist, Henriette, first introduces the new system, his mental voice grumbles with frustration. But when the alternative to this unfamiliar method of speech is to remain mute or, at most, rely on a tedious and inefficient system of “yes-or-no” questions, the spelling system grants Jean-Do a remarkable level of freedom to express his thoughts, needs, and desires. Likewise, needing to be pushed in a wheelchair isn’t nearly as efficient or independent as walking — but it’s a hell of a lot more mobile than lying in a hospital bed. Dependence is not totally incongruent with freedom.
I imagine that to a non-disabled perspective, this kind of renegotiation sounds a bit like grasping at straws, a desperate attempt to “look on the bright side” when faced with the dark fate of disability. If someone is committed to that frame of mind, there’s nothing I or any other disabled person can do or say to change that. However, the fact remains that it is impractical to judge disabled people and their lives by non-disabled standards. At best, it implies that disability is inferior to lack of disability. At its worst, it encourages the eugenicist dismissal of disabled needs and lives as valueless. Disabled people are repeatedly told, both implicitly and explicitly, that they are burdens those around them. In contrast, Diving Bell’s depiction of Jean-Do’s process of renegotiating his conception of freedom and of his capabilities prompts the audience to reconsider any presumptions they may have about being dependent on another person. One of the most touching scenes in the film is Jean-Do’s memory of the last time he saw his father before his stroke. He insists on shaving his father’s face, and the conversation they make throughout the scene, playful and sincere by turns, makes clear that this is not an act of obligation. Though his father is elderly, housebound, and forgetful, Jean-Do does not treat him as a burden but rather insists on taking care of him. This is a demonstration of love. Later, after his stroke, Jean-Do spends a day watching his children play on the beach. His son stands beside him and wipes the saliva off Jean-Do’s cheek. Is it such a burden to look after someone you care for? Is it so shameful to depend on people who love you?** It is only when Jean-Do truly accepts his present condition that he can commit to his decision to give up on self-pity. He glides through his memories as a life treasured rather than mourned. He finishes his book and deems it a better work than the novel he’d had planned before his stroke. “I look forward to the future,” he thinks.
Now, I’m going to interject with a personal anecdote. I first encountered Diving Bell when I was a first-year undergraduate, during one of the weekly mandatory screenings for my Introduction to Film Aesthetics class. The insights didn’t come immediately once the screening ended, but I already knew that the film would become important to me once I’d chewed on it long enough. This was one of the first — if not the first — films I’d seen that featured a disabled protagonist in a narrative that wasn’t particularly interested in propping them up as a blank-faced doll to hero-worship or someone whose life is pitiful enough to serve as inspiration for when non-disabled people feel especially demotivated. It was like opening the shutters in a room I didn’t even know had windows.
I soon learned that my fellow classmates did not share my perspective. Nor did they necessarily recognize that objectifying members of a vulnerable demographic for the purposes of self-gratification was even a problem. When our professor asked for our takeaways from the screening, one student said something to the effect of “The film made me realize that I would never want to be like that.” “Like that,” meaning “disabled like Jean-Do,” for clarification. All around us, there were murmurs of assent and heads nodding. I don’t quite remember the rest of the class session, caught up as I was in a miasma of indignation and bewilderment. Had we watched the same film? Had they gone and watched a horror film instead?
It’s been about five years since that class. I’ve gotten over my anger. (Mostly. I’m still a bit annoyed.) And to be fair to my classmates, Jean-Do/Bauby’s case is a scary prospect. Imagine being healthy, and then suddenly, your body turns traitor. You’re extremely physically vulnerable, you need all manner of help even though you were once independent and self-sufficient, and you’re more isolated than you have ever been. It is terrifying. When my classmate expressed their fear of possibly becoming “like that,” they were demonstrating the fact that Diving Bell had made them aware of the very real possibility that a non-disabled person could become disabled. I said as much in the previous entry in the “Disabled Lens” series, but it’s a fact of life that non-disabled people seem to continue to live in denial about: if anyone lives long enough, they will acquire some form of disability or illness, whether suddenly or gradually. Sooner or later, nearly everyone will have to grapple with what it means to be dependent and atypical—and question whether the fact that they fall short of non-disabled standards really makes them “less than.” They will be faced with the question of whether this gives others the right to devalue them. The grief and the fear are only the beginning. Disabled life is by no means valueless. There is life still to be enjoyed and art still to be made. There will be a future worth looking forward to.
If you haven’t yet seen it, I highly recommend taking a look at The Diving Bell and the Butterfly — and even if you have, perhaps it merits a rewatch. Happy Disability Pride Month.
* I say “a focus” because disabled perspectives, needs, and desires when it comes to media representation are as widely diverse as disability itself. I don’t claim to speak for any disabled person but myself.
** This is to say nothing of the fact that Jean-Do (and Bauby in real life) likely had the money to spend on quality care. Living with chronic illness and disability is expensive and often poses difficulty in finding gainful employment. This undoubtedly places strain on the relationships between ill/disabled individuals and their loved ones and caretakers, especially in households experiencing financial difficulty. However, a meaningful discussion of how disability interacts with money and social class is a digression I’m afraid isn’t in line with the focus of this entry.