In this week’s installment of The New Classics, let’s dive into a topic that isn’t often written about: disabled writers who are taking their place at the forefront of the literary scene. The memoir genre is rife with voices detailing lives of trials and triumph, and though we’ve heard many narratives occupy it, the story arc is more or less the same. Biographies of famed movie stars, musicians and politicians line the shelves of book stores to the point where I grow tired of seeing the same cheesy photographs, the same smiling faces, shrugging shoulders, emboldened typeface.
That is, until about a year ago, when I picked up The Diving Bell and the Butterfly for the very first time. The book is a highly emotional journey, following Jean-Dominique Bauby’s experience with a silencing, suffocating condition. As editor-in-chief of French ELLE, Jean-Dominique Bauby dictated standards of chicness and seasonal trends, morphing the aesthetic norm, decreeing fashion law as the world blithely followed. But after a near-fatal stroke, Bauby fell subject to what is called locked-in syndrome, a condition in which you lose motor control in essentially the entire body, save the eyes, losing all motion capability but, importantly, maintaining full mental capacity. Simple tasks like dressing became impossible for the once-editor of ELLE. Bauby was relegated to the outskirts of a world that once centered around him.
This world does not vanish, however, but embeds itself in Bauby’s psyche. Fashion persists on the written page, guiding the way he dictates his memoir. He sees the world in colors and textures, in stiff and flowing garments, on a spectrum of drab to chic.
The language of fashion permeates his text. He passes by his old office building soon after his stroke, watching it scroll by as his car shuttles down the road. He feels relegated to the outside, out of place amongst the “housewives in flowered dresses and youths on roller skates, revving buses, messengers cursing on their scooters.” Their skirts bloom with life while profanity flying from the tongues of the locals gives rebellious personality to the scene.
It seems cute, cheery, of course, but there’s something that unsettles Bauby. It’s a high tempo, able-bodied atmosphere, with two-legged people gliding by at high speeds on skates and scooters. Bauby’s body does not fit into this system. He is pushed along, passive, like a puzzle piece you can’t find a place for, so you shuffle it around the table for a moment, give up, rest it outside the border for later.
“I would have been pleased to trade my yellow nylon hospital gown for a plaid shirt, old pants, and a shapeless sweater – except that it was a nightmare to put them on. Or rather to watch the clothes manipulated, after endless contortions, over these uncooperative deadweight limbs.”
In Bauby’s mind, it is the same logic that lets floral dresses and scooters describe an atmosphere of carefree youth that lets Bauby’s hospital gown label him as disabled. It is the physical representation of his condition, the thing that exposes him, others him, makes people forget his humanity. On the other hand, the shirt, pants, and sweater he describes are token garments of the average, everyday man. The fluorescent hospital gown is inferior even to the ill-fitting garb he once publically, journalistically, definitively talked down. But now, this is the least of his worries. He is disgusted more by this new norm, the garment that paints him in such broad strokes as disabled. Bauby states later on:
“I see in the clothing a symbol of continuing life. And proof that I still want to be myself. If I must drool, I may as well drool on cashmere.”
Bauby’s clothing is a symbol of his self control and definition, a tie between the distinct worlds of his past and future. Bauby maintains a coy sense of humor, sharing a small laugh with though he can’t utter a sound, he communicates through fluttering eyelids and a motion vocabulary. Bauby maintains a coy sense of humor, laughing along with the reader at his drool, the juxtaposition with such luxurious materials. He is able to consider himself beautiful, to cease resenting his embodiment, embrace it, and dress it to the nines.
As for other modern recommendations to accompany this canon of disability lit, Terry Galloway’s memoir Mean Little Deaf Queer layers itself nicely into this historical context. Having lived much of her life as an actress in the public eye, Galloway has plenty of experience trying to pass in public, and in more ways than one.
“I took on a disdainful air at parties, hoping that no one would ask me something I couldn’t instantly reply to; and if anyone struck up a conversation, I’d monologue…so I wouldn’t slip up and reveal what I was or wasn’t really hearing. Passing as hearing took such a toll that passing as straight was a piece of cake.”
A story describing the intersection of deafness and the lesbian community, Mean Little Deaf Queer is sharp, cutting, witty, and uninhibited. Galloway’s humor shines in heart-wrenching tales of hiding away, shrouding herself in the guise of an able-bodied person and empowering herself to come out in more ways than one.
In the autobiographical graphic novel Marbles: Mania, Depression, Michelangelo, + Me, Ellen Forney constantly reclaims and reformats her appearance. Bold black and white pages show her sweating, short hair greased onto her forehead in curls, back muscles contorting as needles buzz along her flesh. For Forney, tattoos are the gateway into physical definition, asserting control over her body, being a consistent self when she feels deprived of such a luxury. The novel illustrates Forney’s experiences with different drug treatments, bouts of mania and depression and coping with this as a queer woman. Each of these facets tinker with Forney’s physicality in its own way, with neurological dullness or sadness or any of the myriad of side effects they present. She counters this with aesthetics, adding to her scrapbook of inked-on memories, reminding herself that her body is in fact her own.
Finally, I would be remiss if I didn’t include The Man Who Mistook His Wife for a Hat by the late, great Oliver Sacks. Though it’s a bit less related to personal aesthetics and more just an absolutely genius fusion of the medical with the personal, the book details the lives of many of Dr. Sacks’ patients. He gives factual accounts of their memory-loss conditions and his various treatments. More often than not, his theories revolve around the centripetal force of art. Making art, listening to music, it jump starts something in the memories and minds of his patients. It reminds us all, unifies us in the existential line of humanity. Embodiment is but a fraction of existence, and it is time to stop pretending it’s more. Disabled bodies and minds have a place in the forefront of literature, and these suggestions are only drops in the waterfall of stories to be told.
I’m Annie, a recent UC Berkeley grad and publicity intern here at Art + Deco Agency. I’ll be your resident blogger, chatting with and about emerging voices in the literary industry and getting you started on your summer reading list. Catch me here every Tuesday, Wednesday and Friday!