NOS (DISORDER, not otherwise specified), Aby Kaupang and Matthew Cooperman’s collaborative sequence about life with their autistic daughter, is not an easy book, which they are the first to acknowledge: “Collective screams and brain cloud. Fragment collective and brain cloud. If you are having trouble reading this book so are we.” A disorienting assemblage of fragments, paragraphs, and photographs that chronicle “cumulative exhaustion,” their form attempts to mirror, in miniature, the struggle it documents. The circumstances are gutting. A handwritten note added to the facsimile of an evaluation checklist indicates that due to the child’s disordered sensory processing, the family was unable to listen to music for a period of more than a year. A footnote marks the separation from their older child during their younger one’s hospitalization — “distance from home / son to hospital / daughter = 92 miles.” A harrowing conversation about hospice considers the removal of the feeding tube that keeps their young daughter alive.
The book is an account of spouses sleeping in shifts for years, of tedious and grueling caregiving, one parent noting, “I walked the park loop with Maya mobius-ly,” and the other remarking, “There was so much shit in those days. Enemas and Calms and a diuretic hum. The joints of my fingers ached from working the carpet.” To communicate these conditions, difficulty is a poetic necessity. Nothing about the language these writers inhabit is direct or coherent. The center of the struggle is not nameable — “a child of perfect / name and yet innominate no diagnostic / nomen” — and efforts to articulate this experience collide with the limits of language itself — “Language unkempt, / everywhere pages are kept.”
Difficult but never distant, Kaupang and Cooperman’s book drops the reader into textual evidence of a decidedly material world, and they do so with searing precision and felt complexity: “[Q]uivering forearms yarding on a syringe, bursts of chicken slurry arcing over the kitchen.” At the same time, this world is cluttered with paratexts relating to diagnosis and treatment — intake forms, growth charts, questionnaires and data tables, checklists, pharmaceutical inserts, and reproduced signatures. We can envision the hospital setting, “the parking arm the vertical blades of the guillotine elevator,” and feel “the beige room a sadness monitor beeping,” but we are never far from words themselves. Font changes (sometimes mid-line) repeatedly remind the reader that these conditions cannot be standardized. We never gain a transparent window on reality, and neither do they — “it is our ethical duty to not escape.”
The hospital and its institutional apparatuses confine their daughter and structure their experience. Each chapter is labeled as a ward or floor, giving the collection a dramatic and narrative arc from crisis (“critical care”), to “diagnostics,” to admittance (“neuro-psych ward”), to discharge and “acceptance.” The first chapter reproduces a photograph of a hospital building with eight floors, one for each chapter. But soon the scaffold collapses. As the reader begins to imagine the book built on these tiers of “stories,” bound by this formidable edifice, the eye falls to the lower right corner of the photograph where a small child in a diaper is curled up on the grass.
The counter-structure to the hospital’s vertical floors is the idea of horizontal identity. The book takes its epigraph from Andrew Solomon’s Far from the Tree: “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 and catastrophic loss of hope, they were in fact falling in love with someone they didn’t yet know enough to want.” A “horizontal identity” is an inherent or acquired trait that is foreign to the person’s parents, as opposed to “vertical identities” like race, religion, language, or genetic heritage that are shared with parents. Examples of horizontal identities that Solomon considers are deafness, dwarfism, Down syndrome, transgender and gay identities, and autism. This principle guides Kaupang and Cooperman toward the book’s central quandary: how can they as parents come to “know enough” about an unknowable child, and how can they navigate the epistemological paradoxes of knowing her. They can only creep toward this knowledge “in horizontal increments in dosages of slant line.”
Their central strategy, and a brilliant one for this material, is collaboration: confronted with a subject who defies explanation, they develop an interrogative procedure. Through the first-person plural, the axis of telling becomes a triangle with a child outside the language equation. When this plural voice observes that “[w]e forget that she doesn’t speak because she is communicating so directly sincerely always and we can’t explain this to anyone,” the three adverbs tells us how, when, and by what means the book unfolds. Moreover, because the means of disclosure are limited, the reader must forgo curiosity and question their own voyeuristic impulses: “You want to know more about her. So do we.”
This permanent condition of uncertainty can be dehumanizing, reducing the parents to the acronyms MOC and FOC (mother of child, father of child). Their identities become actions — “they mother they father” — verbs that carry gendered baggage (to “mother” is to nurture, to “father” is to sire). Pinned in these roles, how can they tell this story? One poem dramatizes this predicament by filling the page with the syntactic loop “I went to the I went to the I…” When the sentence finally reaches its destination, a new pronoun emerges: “[W]e went to the neuropsychiatric ward we found us there.” Together, “we” can ask what it means to speak for someone (one’s daughter), who cannot speak — on behalf of, by proxy.
How can the daughter’s non-speech be interpretable, let alone transmissible, shareable? What happens to acts of telling when utterances are fugues at the edge of incomprehensibility?
Each speech made
Each seed of syllable
Language fails — “a nounadjectivegarble.” A sentence — “Tyrannical omnivorous” — is necessarily linear, subject-verb-object, an arrow moving toward its target, a vector toward a terminus, yet the daughter’s speech refuses this trajectory, and the sentence almost becomes a circle, a longing the FOC expresses as: “Let him in let her in let loose the radiant / circle of her sentence.” But the sentence forces its way forward into a life sentence nonetheless: “[Y]our daughter is not coming out / you daughter will never lose The Diagnoses.”
Faced with this cold predication, Kaupang and Cooperman repeatedly rupture syntax, interrupting the forward motion of sentences with line breaks, broken page space, and caesurae. When “[their daughter] sings in phones of plosive thirds that do not complete / / the scheme and yet they are awake they are / very awake,” the line break after “complete” reinforces the stalled movement of language toward completion. Meaning-making requires new patterns — “arias of dissonance.” Another poem breaks the prefix “de-” off the words that give us (de)lighted, (de)stroying, (de)licious, and (de)liquesce, suggesting breakdown and de-composition at the level of the signifier. Language is ruptured at the macro level as well. Warped diagnostic checklists appear at intervals throughout the book, not sentences but lists of actions severed from their doers, repositioned predicates that liberate new meanings:
___ sing what a picture slays
___ identifies with the tag on her sleeve
___ creates a family of constellated rage
___ is avian to her own speech
___ is a wild ______________
___ engages in a steady thump
___ alludes to a diagnosis of birds
Each item in these lists is a discrete burst of language that radiates pain.
Living with the daughter’s non-verbal communication, and attempting to communicate that life, leads to self-scrutiny of grammar and reflexive meta-awareness of the sentence. No part of speech goes unturned. Indecision about possessive pronouns — “Yours. Mine. Yours. Hers.” — prompts an imperative to examine a deictic relationship: “See the patient over there | the patient is seen from over here.” How can the point of view settle when “[i]t is a violence of pronouns to be / he and I and she” and “I is nothing but a violent noun”? Even prepositions must be assayed: “Questions arise for / on / to / of.”
What grammatical forms might work, and how can there possibly be any chance of orientation when we are confronted with “terrible nouns” like “spectrum”? Verbs hang heavy with uninflected stasis in infinitive forms — “to sleep or to know / to eat or to know / to waiver to drug to measure to know,” “to open” “infinitive open” — or function to urge the child to comply with directions — “trick: sing this is the way we verb verb verb.” Or they accelerate into violence when conjugated — “We bend and slap and pull and tear / / We scream and rent and fail and tear.” Grammar seldom works as expected: “[P]ast tense is how we say nearly present or something overlapping.” Pronouns ordinarily cannot take adjectives, but here they are forced to: “[S]ickly she / oddly she / withering she.”
This struggle with and scrutiny of language surrounds — indeed is — the effort to understand the child’s diagnosis, a diagnosis that can never fully account for the extent or etiology of her condition. Diagnosis is a process of elimination, of definition by negation, but the narrowing in this case does not yield certainty for the family — “not cancer not leukemia not cerebral palsy not paralysis.” Living without knowing the cause (“somebody’s fault”), Kaupang and Cooperman persist in excavating the “gnosis” in “diagnosis,” the knowledge of spiritual mysteries: “There is a lost gnosis in our little girl, there is a lost gnosis.” That excavation adds up to this book. It becomes a record in fragments but also an almost autonomous entity, a character within the script, resisted and even unwelcome: “[T]he book began itself.” “We try not to speak for Maya. We try not to write a book,” they write, but “[t]he book becomes a part of the family by earning it, by showing up again and again.”
NOS (disorder, not otherwise specified) is also a book about gender and caregiving, ecopoetics, disability, and performativity. It finds the “relay” in “relational” and the “delay” in what might be called delational — the way language almost touches the inarticulable as it slows down along a horizontal line. “Writing this book was a burden and a door,” Kaupang and Cooperman write in a footnote in conclusion, adding, “Understanding is ultimately a horizontal identity.” Their movements toward understanding remind us readers of poetry why we need difficulty. Once in a while, this book offers a sense of peace and remedy, but there is no triumph here, no narrative closure that suggests trials overcome. There’s wry respite but no illusion of healing.
These poets remind us that language is a refractive medium. They lament that it is not otherwise — “if poetry were a straight straightforward social action,” “if memoir not memory but tongue of the mind” — but the medium clouds over before the idea coheres. I’d venture that this synthetic text compels more connection, induces more empathic response, than any plainspoken lyric narrative could. Plainspoken is not possible: speech is not plain. Kaupang and Cooperman lay bare the method and it is one of survival: “There was no song in Poetry House and yet this is the song we learned to sing. A horizontal song.”