NINE YEARS AGO, when my son was diagnosed with Down syndrome a few minutes after his birth, I leaned heavily on the writings of Michael Bérubé. He helped me parse out a radical epistemological crisis in my own life. Signifiers such as “self,” “son,” “other,” “identity,” “intelligence,” and even “meaning” became radically unfixed, and Bérubé helped me weep and laugh at my own struggles in equal measure.
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.
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.
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.