Every family suggests a geometrical figure, a more or less plottable set of shifting relations. Think of the Bundrens in Faulkner’s As I Lay Dying. Anse explains, by way of geometry, his inclination to “stay put.” As a man, he was made “up-and-down ways,” perpendicular to those things that are meant “to be always a-moving,” “longways, like a road or a horse or a wagon.” Addie—Anse’s long-suffering wife and the mother of their five children—describes the world as a grid: “how words go straight up in a thin line, quick and harmless, and how terribly doing goes along the earth, clinging to it.” Upon these planes and along these axes, the Bundrens move by metaphor and metonymy. As its most exceptional member, Darl is also the family’s most creative mathematician. “It takes two people to make you, and one people to die,” he calculates. “That’s how the world is going to end.” Darl’s experience of disability is as irreducible as his diagnosis. The family puts Darl away, shipping him to the mental institution in Jackson, but his laughter echoes past the novel’s end. By virtue of his specialness, Darl exceeds even the Bundrens’ warped, Euclidean rules. It’s as if Darl’s characterization allows Faulkner to anticipate Stephen Hawking’s hypothesis: “one cannot deduce the geometry of the world from first principles… Instead, one has to measure the space we live in, and find out its geometry by experiment.”
Poets Aby Kaupang and Matthew Cooperman are no Anse and Addie; their daughter, Maya, who is severely autistic, is no Darl. The method of their collaborative book is documentary poetics (charts, letters, DSM codes, forms, photos), not fiction. And yet, NOS (disorder, not otherwise specified) recalls Faulkner’s novel in its fearless, experimental measuring of the spaces they live in, with and without disability. Most pressingly for these two writers who are also parents (“they themselves afraid of being those parents”), this book helps the reader think about what it means to live with those who live with disability. I cannot name another book from the past ten years that more lovingly leans on experimental poetry to convey the everyday texture of self, marriage, and family under duress—with all the senses of hardship, compulsion, and strength that word suggests (duress from the IE root, *deru, tree, oak). NOS moves its readers into a tight place and holds us there, with them.
Organized in eight sections named for the floors of a hospital building, the book takes its structure from the “peacefully preventative architecture” of the hospital, with its “sanctioned smudge of space.” The “vertical blades of the guillotine elevator” whisk readers upward from the first section, at ground floor (critical care), through the neuro-psych ward on floors four and six, to the book’s end, at top floor where we are “discharged.” Elevators of glass, of steel, ascend and descend, doors close and open, open and close onto food courts, wards, and corridors, in a muffled rhythm that invokes the institution’s “truth of death prevention,” its “strategy of low tiers and sympathizers.”
Through the “well-lit halls” and across the pages moves an attendant cast of characters: specialists, patients, parents (“MOC is mother of child”; likewise, FOC is father of child in hospital speak), doctors and their entourages. Amid the paraprofessionals, the support groups, the caregivers, and the machines (“beeping & churning / interrupted by a jolt a flash / a bleak beating or blast”): the singular child, Maya, “our little girl in a study of studies,” “a paradox entire.” Among its many difficult gifts, this book offers a phenomenology of suspense, the gradual unveiling of an unknown that surely and successfully resists the intelligence.
On floor three/“general hospital,” the parents deliver Maya for testing:
she’s in treatment and we are waiting ___she’s in a procedure and we are
waiting she’s being diagnosed drugged poked drawn wired scanned
dress and un-dressed
An endlessly retraced road connects hospital to home. “Someone is always en route13,” they report, documenting the “[d]istance from home/son to hospital/daughter = 92 miles.” Home is the site of banging, whimpering, screaming, cursing, scrubbing, singing “in phones of plosive thirds”; of “tyrannical” silence, of lovemaking, drugs, and sleep; of Home Improvements, Home Destructions, and Home Departures. The tally of miles traveled and hours spent (“the cumulative exhaustion”) is compounded by the medical waste amassed. A gastrointestinal disorder necessitates feeding by g-tube, so that Maya “eats her entire world through something better described as a button on her belly.” At such moments of thick description, as in the final section (floor eight/”discharged”), the poets choose prose to deliver the data:
We forget that she doesn’t speak because she is communicating so directly sincerely always and we can’t explain this to anyone. She still doesn’t eat/doesn’t sleep/doesn’t talk/and she is still in diapers. She is an environmental crisis. We imagine the mountain she’s made, she daily makes, of diapers and shit and wipies, and shampoo bottles and soiled car seats, and plastic toys, she cares not a whit. How can such a pliant little body make so much? She pushes and pulls and climbs her potty mountain to the end.
The details are hard (“If you are having trouble reading this book so are we,” they assure us), and yet there is joy. “[Maya] laughs at parallels like lampposts along a highway, and when there is clapping, clapping anywhere, she believes it is all for her.”
But poetry is Kaupang’s and Cooperman’s preferred mode, suited as it is to their self-imposed task, to name as closely as possible “the lost gnosis” in their daughter’s multiple diagnoses. In floor two/”diagnostics,” they bring prosody to bear on the question of etiology:
Questions arise __for_ / _on_ /_ to_ / _of
and we will see these things through to the finish
What can be finished in any human thing?
Love in the
body and the divisions. Two people lay together
their gnosis to bear.
Bearing __| __Gravity__ | __Orient__ | __Circumference.
For, on, to, of. In the array of prepositions, mother and father test the relations between one another, and with Maya, separately and together. The child is born of them, yet is other to them; they work on her behalf, and yet despite, and also against her. All parts of speech are infected by this riddle of likeness and difference. The father confesses: “It is a violence of pronouns to be / he and I and she,” “I is nothing but a violent noun” (I hear strains of Faulkner in the violent play of pronouns and tenses, of linguistic lack and surfeit). Above it all hovers the dreadful unknowing of Maya’s condition, “the unseen and unseemliness of it all”: “The terrible noun called spectrum / keeps sliding // swirling / away // celestial breakdown of direction / that makes // that begets violence.” Kaupang and Cooperman convey with devastating accuracy how disability disorganizes one’s sense of time, slowing the course of day and night, and pitting the rhythms of one lifespan against another. In floor seven/”MOC,” the mother speaks to her own ambivalence (“I wanted and didn’t want this”):
to have an auspicious child __a child of perfect
name __and yet innominate ____no diagnostic
no turn to which she turns
is to slowly fade from the world _____myself
a delational story
The parents cannot chart Maya’s developmental progress along anticipated milestones (as they may have done for their older son, whose existence is alluded to only occasionally, so as, tenderly, to keep him in the wings). Instead, Kaupang and Cooperman must unspool a radically alternative sense of time: “past tense is how we say nearly present or something overlapping.” None of them will outgrow Maya’s condition. She is a chick that won’t fledge: “What / does not fly”; “What code in the wing / of a sparrow.” Normative notions of “becoming” dissipate (“The child becomes backwardly”), and in their place flood fears of failure, and “unbecoming” shame. The present moment holds: “I staunch the fear of my own death and her / perpetual childhood. Today was a good day.”
In her groundbreaking work on autism and parenting, The Siege (1967; 1982), Clara Park describes the early experience of “not knowing what ailed” her then three-year-old daughter. The definitive diagnosis raised more questions than it answered: What was autism? How could we adjust to an unknown? To live with autism would be like living under water. We might never come up, yet we had not the option of drowning.
In the years since the initial publication and the reissue of Park’s book, knowledge about autism and its treatments has increased considerably, as have the numbers of cases diagnosed. Kaupang and Cooperman allude to the studies: “Genetics, environmental toxins, parental error, vaccines, voodoo, refrigerator moms, sins… Cumulative incidence, point prevalence, p-values, e-values, editorial error, hopeful outlook, juice boxes and yet the children are unknown.” Despite advances in data accumulation, professional support systems, drug therapies, and institutional design, NOS returns us to the epistemological and existential questions at the heart of parenting and disability that Park explored so acutely fifty years ago. “Again and again we used the formulation [as if], as we searched out explanations of our child’s strange contradictions. As if—yet we could not and cannot be sure,” Park writes: “The words as if must function to remind us that we can be sure of no interpretations.”
Initially resisting the writing of their book and the “public processing” it entails, Kaupang and Cooperman eventually relent: “The book becomes a part of the family by earning it, by showing up again and again.” Near the end of the book, the poets admit that certain responses to the manuscript stung; some readers “weren’t sure [the parents] loved [their] daughter.” In Kaupang’s and Cooperman’s “angry and baffled” response to one reader’s need to “know more” about Maya, I hear echoes of Clara Park’s “as if”:
As if we didn’t. As if our attempts at bringing her to the hospital were not an enormous effort at knowing her. As if we knew the problems, we might provide the solutions. As if the repeated diagnosis, “Not Otherwise Specified,” wasn’t such a blow because no one could specify, could lead us to the here that was more than ill body, body ineffective. No one could name a thing so we could treat a thing.
____________Maya means ‘illusion’ and we have wandered looking.
Most searchingly, this book points to a redefinition of love as the most strenuous form of surrender. (In this vein, Clara Park turned to Donne to sustain her. Donne’s vocabulary is that of NOS as well: batter, knock, breathe, shine, break, blow, burn.) In one of the more lyrical passages of NOS, the father confesses his failing to his daughter, and offers himself to her: “I have let you / not become // So speak like a cut / through me make a cut // a seep to be a light upon a wall.” Danger greets our every desire to know. bell hooks reminds us, together with Kaupang and Cooperman: “The practice of love offers no place of safety.”
“Writing the book was a burden and a door. Understanding is ultimately a horizontal identity,” Kaupang and Cooperman explain in a footnote near the end of the book, invoking Andrew Solomon’s work that grounds their thinking. For Solomon, who includes autism as one of many forms of difference, not knowing becomes the precondition for a new kind of parental love. Solomon has interviewed thousands of parents who have made the choice to turn in, toward their child, rather than to flee or banish or deny (à la the Bundrens). The epigraph of NOS is drawn from Solomon: “For some parents of children with horizontal identities, acceptance reaches its apogee when parents conclude that while they supposed that they were pinioned by a great & catastrophic loss of hope, they were in fact falling in love with someone they didn’t yet know enough to want.” Clara Park, too, was surprised by her own unfolding openness to the gift of her daughter’s autism: “I write now what fifteen years past I would still not have though possible to write: that if today I were given the choice, to accept the experience, with everything it entails, or to refuse its bitter largesse, I would have to stretch out my hands—because out of it has come, for all of us, an unimagined life.” Readers should stretch out their hands for NOS, this “horizontal song” of hard-won love.