Roland Carette-Meyers looks back at The Diving Bell and the Butterfly, a rare piece of cinema about disability that offers the potential for better representation.
Ten years ago, The Diving Bell and the Butterfly was released at the Cannes Film Festival and, months later, in the United States. Roughly one year ago, Me Before You was released and while the two films and the books upon which they are based are very different, they do have one key feature in common: their protagonists are individuals with severe paralysis as the result of catastrophic damage to their nervous systems. Prior to these two films, the only major character in mainstream literature who lived with such severe paralysis was Monsieur Noirtier de Villefort from Alexandre Dumas’ The Count of Monte Cristo. Owing to the unique nature of the two modern narratives, some comparison is valuable though will be, for the purposes of this article, limited. Not only because I am meant to write about the experience of watching Diving Bell at its ten-year anniversary, but also because Me Before You is an ableist train wreck and snuff film that is fucking terrible and bad for society.
As Me Before You opened, it was immediately caught in a flurry of protests and of brilliant work by and on behalf of folks who present with a disability. Despite this, the film grossed $207.9 million dollars worldwide on a $20 million budget. It won a People’s Choice Award and has an “A” rating on CinemaScore (for whatever that’s worth). Me Before You, both the insufferable film and insufferable book, take the perspective of Lou, the manic pixie dream caretaker who, literally, becomes a multi-millionaire when her patient-cum-soul mate (blah, blah, blah) commits suicide. Will (Lou’s counterpart, the super-rich dude who would rather die than live the life he had before his accident) was a jetsetting playboy who is, literally, confined to his family’s converted stables and spends six months of his life convincing Lou to live her life as broadly as possible so that, when her life ends (either by death or disability, or so suggests this garbage), she’ll have had all the experiences she deserved and more. His literal last words to her? Just live. Fuck this. Fuck this so hard for many reasons. Not only (as has been mentioned everywhere a million times) is the central thesis of the film that death is preferable or at least equivalent to disability, but that Lou’s consent in this matter makes her a tragic hero.
In the book, written by Jojo Moyes—who does not present with a disability—we spend 31 pages voicing our concerns about wiping the bottoms of those who cannot manage that themselves and then another dozen pages finally meeting Will and watching him wallow in self-pity and literally writhe, scream, and burble to tease Lou and mock her fear of his appearance. In Diving Bell (both the film and the book), we take Jean-Do’s point of view and he is never portrayed as anything but the complex, good-humored, and joyful man he has always been. Jean-Do is not the hero of the story, but simply its narrator. This not only proves that great stories do not need a Campbellian hero to be compelling, but that the lived experience of disability need not be a prop to warrant pity, to cultivate condescending pity, nor yet to martyr themselves in the interest of “unburdening” their able-bodied friends and family.
The last thing I will say about Me Before You is that it is a heartbreaking reminder that, even in the years since the evolution of the Americans with Disabilities Act, even with so many other real victories for individuals with disabilities and the flourishing of a disability aesthetic, we still have so far to go before our arts spaces are ability-inclusive. This is absolutely a civil rights issue that evokes John Wayne’s Genghis Khan, Mickey Rooney’s I.Y. Yunioshi, Laurence Olivier’s Othello, and everything about 2012’s The Impossible. Google “CripFace.” It is a thing. In fact, just skip Google and visit www.peoplearentbroken.com.
But what of Diving Bell as a film that stands on its own merits? What of the last ten years removed from the context of Emilia Clarke and Dumas? In terms of the piece’s cinematography, soundscape, score, performances, and adaptation of the source text, it is a brilliant example of French storytelling and a masterclass in how even the simplest shift of a camera’s angle or focus can speak volumes. The most compelling moment in the film, for me at least, is when the audience is forced to take the perspective of Jean-Do’s right eye as it is sewn shut to prevent infection. Jean-Do’s panic is our own and suddenly we feel the true magnitude of his stroke.
For some medically unknown reason (“Sometimes these things just happen…”), Jean-Do had a stroke, was in a coma for some time, and now has Locked-In Syndrome. Left with only the use of one eye and, as time goes on, his tongue (he learns to make a sound like “L,” the first step to relearning how to swallow). The story does not pity him, but takes us on the journey through Jean-Do’s moving on from his self-pity and towards the mastery of a radical form of communication. The hospital’s speech therapist has built a keyboard of sorts. Jean-Do blinks once for “yes” and twice for “no” and the therapist (and soon his friends, family, and others) list out commonly used letters to slowly spell out sentences. Thus, Jean-Do’s voice is returned to him and he sets about dictating a memoir. Originally a leading editor at Elle magazine, Jean-Do had secured a publishing contract to rewrite The Count of Monte Cristo but featuring a female protagonist and telling a story centered about female vengeance against a world built on patriarchy (strikingly coincidental in Jean-Do’s life and relevant in my rewatch).
Over the course of several weeks, Jean-Do and a writing partner, Claude Mendible, assemble a book intended to be “A Memoir of Life in Death,” a direct antidote to the idea that disability is death, that life must look and feel a certain way. Aside from Jean-Do, most of the actors in the film are female (generous and stern caretakers, his ex-wife, so on and so forth), all of whom deliver quality performances.
As is the nature of the book, however, this is very much so a solo-performance piece in the vein of Cast Away (2000) or Moon (2009). Mathieu Amalric (known first to me as the Bond Villain in Quantum of Solace, which I saw just days ahead of Diving Bell) is brilliant, there is no question. His performance as Jean-Do was compelling enough to win him the César Award in 2008 for Best Actor and several nominations across the world in a variety of festivals and from collections of well-intentioned critics groups. Clearly, the attention and care of this performance is well regarded, but nonetheless falls short. If we only look at the last twenty years of the Academy Awards and only at the category of Best Actor, we discover a pattern of non-disabled actors using stories of disability for their own personal gain (intentionally of otherwise). Fourteen nominations and awards have been handed out to actors without disabilities performing as disabled characters, individuals with severe diseases (AIDS, for example, which is legally protected as a disability), or those whose central journey is about transitioning from a life without to a life with disability.
No matter the technical quality of any given portrayal, disabled actors argue that non-disabled performers lack the lived experience of disability and, thus, cannot bring these characters to life. Furthermore, neither the director, screenwriter, nor any member of the team of executive producers of this film present with a disability. It is reasonable to argue that artists need not live the experience of their subject to render the subject with honesty and sensitivity. Ideally, the art of performance in the modern world must be one wherein all folks can, ideally, portray any character. This is a far-off vision, however, as some groups (specifically the non-disabled) are privileged against others and disabled actors are denied the chance to tell their own stories in mainstream spaces or to act against stereotypes.
At the time of my watching the film I cried. Of course, that is what movies like this want me to do. I cried during Million Dollar Baby (2004) and I Am Sam (2001). Forrest Gump (1994) was one of my first favorite films ever, and almost everyone likes to point to Daniel Day-Lewis in My Left Foot (1989) as one of most inspired works of art in contemporary cinema. Movies like this follow a very specific and successful formula to evoke emotion, get us talking, and drive box office revenue. I am not too proud to admit that these formulas work on me, but when we can shake that off and peel back the gloss of a film, what’s left? In these films, we see disability as a prop, as “Oscar Bait.” In Diving Bell, we see a man falling in love again, eager to tell his story. We see a man with an indefatigable imagination and sense of humor. Disability is simply a part of Jean-Do’s character, not the whole of its composition. This holds up. This is the case even ten years later and in a careful viewing (though still teary), we explore Locked-In Syndrome and its parallels with what it means to be house-ridden (Jean-Do’s father cannot manage stairs, and thus can never leave his home) or to be captured by terrorist factions (one of Jean-Do’s friends lived in a Lebanese jail cell for four years). While these comparisons have their challenges, they are not without merit. They offer a concept of disability outside of clinical diagnosis. Too often disability is only explored through the lens of medicine, of prognosis and life expectancy. Jean-Do offers us more.
Ten years ago, this was a quiet film I saw in some now defunct theatre near UW. Ten years ago, individuals who use a wheelchair had a chance to see something near to their experiences onscreen. Now? Little has changed in terms of representation, but we can look back to this film (and the book—READ THE BOOK IT IS SO BEAUTIFUL) as a model. Again, this is not a perfect film. It is not without its missteps, but it serves as a lesson to artists and audiences alike. When people living their stories get to tell their stories, the work is deeper, more important, more beautifully rendered, and can effect change.
 As a quick sidebar, I would like to note that many (if not most) individuals with disabilities live with “invisible” disabilities. Their stories are no less valid that those of folks who present with disability (i.e. those folks who are seen immediately as “being disabled” as the result of a mobility device, white cane, et cetera). For today’s purposes, I must narrow my focus.