The first few days of this new year in New York have been warm and rainy, entirely unlike what I expect from January, and certainly unlike what I experienced during the January starting with the New Year’s Day on which my wife and I adopted our big, nervous dog. That winter five years ago may have lacked what has come to be known popularly as a polar vortex. That winter five years ago was our last as childless adults. That winter, during which I spent many mornings running my dog before heading off to days of teaching and evenings of interpreter school, was the first of many instances since in which the obligation to care for another being exposed something I’d been avoiding for years: a real reckoning with disability in my own life. Within the institutions of family and marriage, within the roles of first partner and then parent, I began to finally reconcile and adapt to my own body’s peculiarities regarding balance, weakness, neurodivergence, and proprioception. If that last term is a new one for you, I'll give you my favorite definition, from Nancer Ballard: “space without you.” At the moment, that seems an apt description of many institutions of civic life: marriages and families and hospitals and schools. This issue’s six selections of prose fiction and nonfiction each explore a variety of this tension between individual and institution.
If a thread connects the four pieces of fiction, it's the appealing poise of the slingshot-carrying ‘you’ resisting the inertia of a system, an institution, a social ‘space'--and in most of these pieces, that space isn't terribly interested in accommodating the 'you' -- it would just as soon do ‘without.’ Shannon O’Connor’s “The Roommate” explores the nexus of psychiatry, the legal system, and a lurid media. Raymond Luczak’s “Kidnapping” captures the inherent ableism and audism built into traditional family life. Grace Lapointe’s “Categories” captures the difficult initiation into a school system for a child with cerebral palsy. Carolyn Lazard’s “Colostomy Fannypack” addresses gender and beauty in the context of illness and resistance. Taken together, these pieces pay a cumulative witness of venues that often provide the backdrop of narratives rooted in disability experience.
This introduction is being written on the day that the Republican-controlled Senate voted 51-48 to repeal the Affordable Care Act. As a journal, we are beginning a project with the aim of bearing witness to the impact of the new administration on the outgoing administration's imperfect expansion of basic care. We are reading literature of witness for a special section, guest edited by Eileen Cronin, on access to healthcare. We are seeking fiction, nonfiction, poetry, and art; complete details are available here. Submissions close June 1, and the issue will publish in late summer.
The other way I’ve heard proprioception explained is a reverse of the initial definition, the mirror image of “space without you,” and that definition goes something like “the body in space.” The two essays in this issue both play with form as a way of grappling with the intersections of disability and perception, expression and memory. In “The Things That Resonate” M. E. Perkins writes, “If bodies were meant to fit a certain natural definition, my hearing loss would be unnatural. I would be unnatural.” She describes an experience at camp, where a girl in her cabin showed her that “skin is just skin. It’s a cover we can’t judge without knowing the kinetic story beneath.” As often as the self expands through interaction, it will also encounter its limitations. In “Ten Truths (and Ten Lies)” Cinthia Ritchie writes about her voice:
“There were times when my son was younger that I was unable to say his name. Why in the hell did I give him such a name, the hard constants in the beginning, those guttural sounds, my tongue flailing and struggling and nothing coming out but my own spit? It’s a good name, noble and proud. It suits him. But holy crap, the years I stood grimacing and fighting my throat when someone asked, “What’s your son’s name?” And then the shame, the utter defeat of not being able to get it out.”
I know this frustration -- of the body as seen from the outside trapping the language, precise and resonant, on the inside where it does no good -- and Ritchie’s piece, along with the others in this rich issue, they reset perceptions about bodies in spaces, even just for a moment, resetting perceptions about the people in them.
I should come back to where I started, to the dog who in that first January knocked me down with her skittish power and my startled disequilibrium. She’s older now, and has relaxed a little bit. But two children later, she gets shorter walks and less exercise than I’d prefer. At times, she pulls, and she was pulling on our way out of the apartment building one evening when I’d gotten home later than I’d hoped.
A woman looked in our direction and said the words, “Who’s the boss of your body?” It was rude, sure, but more than that it was an attempt at being passive aggressive and clever that only ended up being vague and condescending. Was she talking to me, about my body, with the implication that the dog was and should not be the boss of my body? Was she talking to my dog, about her body, with the implication being that I was and she should stop trying to be the boss of her body? Or some other combination of these audiences or effects (whether desired or achieved).
It all comes back, as everything seems to these days, to witness of power and resistance to its abuses.