In Life as We Know It (Vintage, 1998), Bérubé refracts his thoughts about Down syndrome, intelligence, disability policy, and fundamental questions about representation and humanity through the experiences of the birth and diagnosis of his son, Jamie. I read it in those first fraught weeks of my son’s life. Whereas so many other pieces on Down syndrome seemed scientifically cold, relentlessly cutesy, or alarmingly tragic, Bérubé offered a fellow academic father’s perspective. Years later, there remain passages that immediately take me back to my living room in Minnesota where I read it, frequently with a sleeping infant on my body, generating sensory and emotional memories that are, frankly, a little complicated to articulate in the classroom. But Bérubé showed me that personal vulnerability can also be part of academic practice.
Life as We Know It reveals what happens when a practiced cultural and literary critic turns his attention to disability. His latest work, The Secret Life of Stories, operates in the other direction. Bérubé applies the results of years of work on disability, coupled with the literature he both studies and consumes. He rejects distinctions between high and low culture, shifting easily from Cervantes to Philip K. Dick and Faulkner to Galaxy Quest. He engages with novels explicitly about disability — Life & Times of Michael K and The Curious Incident of the Dog in the Night-Time, for example — but also brings in other works containing “narrative deployments of disability” such as Don Quixote, The Woman Warrior, and even Harry Potter. These stories are not about disability, but disability infuses the texts in ways he finds impossible to ignore. Overall, Bérubé argues that such narrative deployments can provide “powerful meditations on what it means to be a social being, a sentient creature with an awareness of mortality and causality — and sentience itself.”
Those are some pretty high stakes for what the author himself calls a “short and sharp book,” written in a loose, engaging style replete with personal anecdotes, plenty of overt jokes and in-jokes, and some significant meta-textual mischief in the footnotes. As Bérubé says, he decided not to write a comprehensive “Rhetoric of Intellectual Disability in Fiction” (some enterprising team of people should write this). Rather, he’s picked out select books that I can imagine him either teaching or just reading for pleasure, identifying themes to explicate, and taking as much delight in the retelling of key episodes as he does in the deeper analysis.
Bérubé has organized his work into three main chapters: motive, time, and self-awareness. The first chapter examines (borrowing theorist Ato Quayson’s term) the ways intellectual disability serves as the “ethical core” of narratives, starting with Harry Potter. The great saga of the wizard world is not about intellectual disability, but all the action, Bérubé argues, ultimately stems from Albus Dumbledore’s reactions to his sister’s disability and disability-related death. Here, then, lies a perfect example of Bérubé’s argument that disability infuses literary production in ways that a reader, indeed, an author, might miss. Intellectual disability functions as motive, even if none of the main characters are disabled. After a brief discussion of the theoretical basis behind this insight, he turns to two dissimilar texts in which he finds disability playing similar functions in regards to motive: Maxine Hong Kingston’s The Woman Warrior and J. M. Coetzee’s Life & Times of Michael K. The latter is about disability in a way the former is not, but both provide “a rendering of intellectual disability as the condition of possibility for the text and its apprehension by readers.”
That “condition of possibility” is true for the other stories we encounter in the second and third chapters as well, but Bérubé moves on to other topics, selecting two additional ways (among many) that intellectual disability can shape narratives. He opens chapter two, “Time,” with Faulkner’s The Sound and the Fury, but the heart of the chapter is his close reading of a relatively obscure Philip K. Dick novel, Martian Time-Slip. Bérubé, in fact, notes in the introduction that if the book has no more impact than getting people to read this sci-fi story, he’ll be content, and his fascination with the work shows through the analysis. In Dick’s novel, autistic individuals (remember this was written in the 1960s) are able to perceive across time and may even be able to alter the time-stream in order to change the perceived future. This power mixes with a plot about eugenics, institutionalization, colonialism (the native Martians are black-skinned and their culture is being destroyed), and real estate. It’s now high on my list of books to read, so mission accomplished. More important, though, is Bérubé’s argument that fictionalized intellectual disability can reveal “other ways of being human that expose and transcend the limitations of our own space and time.”
Chapter three, “Self-Awareness,” explores the “narrative irony” of characters with intellectual disabilities who are aware that they are in a text. Don Quixote for example reacts in volume two to reading volume one of Don Quixote. Bérubé finds similar meta-textual playfulness in works such as Curious Incident, The Speed of Dark, Luigi Pirandello’s play Henry IV, and the film Galaxy Quest. It’s not that the various appearances of disability are similar in any of these texts, but that “their narratives operate in similar ways, and that their fictional disabilities are the key to those operations.” Moreover, while there are plenty of self-aware narrators throughout literature, when “textual self-awareness implicates or is implicated by intellectual disability, then we are dealing not only with a different kind of formal textual experiment […] but also with a degree of moral seriousness that is not to be found in ordinary fun-house metafiction.” He continues, “intellectually disabled self-consciousness […] compel[s] us to think about our social relations with humans of all varieties and capacities.”
Collectively, the three chapters make it clear that intellectual disability in fiction creates space for authors and readers alike to expand narrative possibilities. I find the argument persuasive both in the whole and most of the individual readings. Beyond the literary analysis, though, Bérubé plays with his own meta-textual themes to both add playfulness and weight to the book. On the light side, he spackles his prose with parenthetical “spoiler alerts,” slang such as “OMG,” genuinely amusing anecdotes, and various hidden jokes (likely many of which I failed to notice). But I did catch this one (spoiler alert). Bérubé concludes the third chapter with a classroom anecdote in which his students failed to read the hilarious index to Nabokov’s Pale Fire. Professor Bérubé appears as a kind of character in The Secret Life of Stories, revealing that the index provides meta-textual commentary enlivening a text with which students otherwise find difficult to connect. Pale Fire, he explains, “deploys intellectual disability as an invitation to the kind of hyperattentiveness […] to every personal and textual encounter.” If you don’t pay attention, the narrative professor warns his students, you might miss something. In the same section, naturally, Bérubé breaks to give us a little anecdote about the seminar in which he met his wife, then adds a footnote, revealing he’s lied to us in the main-text, warping the truth to make a better story. Like so many of the self-aware characters he discusses, Michael Bérubé is an untrustworthy narrator.
Ordinary fun-house meta-nonfiction aside, intellectual disability also provides the ethical core for this text, much as it does for so many of the fictional works. Throughout, Jamie Bérubé is present. Jamie’s discovery of what stories are opens the book. Jamie’s continued contemplation of stories reappears throughout, either explicitly or implicitly. In the final pages, I suspect he is especially present during a sober discussion of Lennie Small, the disabled character in Of Mice and Men. In the state of Texas, Bérubé reminds us, a disabled individual can be sentenced to death if their “mental capacity […] exceeds Lennie’s.” Suddenly, how we interpret literary representations of intellectual disability becomes a literal matter of life and death. Bérubé writes, “the interpretive stakes are always high when the subject is intellectual disability, because the stakes are ultimately about who is and who is not determined to be ‘fully human,’ and what is to be done with those who (purportedly) fail to meet the prevailing performance criteria.” I can’t prove that Bérubé was thinking about his son when he wrote that sentence; I can only tell you that as I read, I was thinking about mine.
My son, now nine and with limited verbal skills, has a rapidly improving grasp of narrative. Not long ago, he was sitting on my lap in the third row of a movie theater as Star Wars: The Force Awakens wound toward its climatic battle. It had been a bit of a tough watch for him. We arrived late enough that we had to sit near the front, where the loud noise and closeness of the images might easily have felt overwhelming. About an hour into the movie, he put aside his snacks and climbed onto my lap, lightly stimming by shaking a necklace of purple beads with one hand, and stroking the hairs on my fingers and arms with the other. The sensory input seemed to help and his eyes never left the screen. But did he understand the story he was watching?
Then it happened. Kylo Ren (the bad guy) reaches out his hand for the fallen lightsaber that once belonged to Luke, and before that, to Darth Vader. The Force elevates the lightsaber into the air and it flies toward him, but (spoiler alert) instead spins its way into Rey’s (the heroine) hand. This moment is the true climax of the movie, but it lacks any overt cue to alert a watcher. There’s no explosion, celebration, or passionate kiss, but just a young woman holding a weapon. The big fight hasn’t even started yet. As the blue blade sprang into life, though, my son cheered for the first time during the movie, the tension in his body shifting to excitement. When the credits rolled, he danced in the aisle.
Later, as I tucked him in his bed, I told him, as I always do, “Once upon a time there was a boy named Nico, and he was a …” Interrupting as he always does, Nico giggled and seized control of the story, saying, “The end.” I turned out the light.
David M. Perry is a disability rights journalist and associate professor of history at Dominican University.