We name our children before we know them, and our names express our hopes for them. In doing so, we are not unlike flight attendants welcoming the child to a place we haven’t yet arrived in. But what happens when one’s child is—as Winston Churchill said of Russia—“a riddle wrapped in a mystery inside an enigma”? Aby Kaupang and Matthew Cooperman named their daughter Maya (“illusion”); twelve years after her birth, they admit that she is still “an elsewhere,” “innominate.” Their new book of poems, NOS (disorder, not otherwise specified), describes their family’s life with this unplaceable daughter. Thus far, she has been defined mostly in terms of diagnostic codes and missed milestones: “She still doesn’t eat/doesn’t sleep/doesn’t talk/ and she is still in diapers.” But Kaupang and Cooperman also move beyond this limited and limiting view of Maya’s life as a foreclosed horizon of possibilities. Their poems drift in and out of the rigid rhetorical structures of bureaucracy and biomedicine, to show how such frameworks both shape and distort the experience of disability. Ultimately, their book asks an important, impossible question: how does it feel, and what does it mean, to love a child like this?
Few life events reshape one’s sense of time and space as radically as the arrival of a first child. In the case of a child with profound medical and developmental challenges, this transformation takes place on multiple levels. Cooperman and Kaupang frame it in architectural terms. Maya’s needs don’t only alter the sleep schedules, meal routines, and distribution of attention within the family home; they also force her parents into a new architecture of experience: the hospital. Within this space, the authors find themselves lumped in with the parents of “other un-specificable children”: “Because you have a disabled child you must represent, you must attend, you must be like these others.” Moreover, they themselves become specimens under the medical gaze. Paperwork renames them “MOC” (mother of child) and “FOC” (father of child), mostly powerless but always potentially worthy of blame. And since the linear structure of “normal” child development—first bite, first word, first day of school—does not apply to Maya, it gets replaced with the vertical architecture of the children’s hospital: “Floor One,” “Floor Two,” and so on, as the book’s sections are titled. Routine and recursiveness replace progress. “Most days are unspecified.”
Within this setting, bureaucracy and medical jargon, symptom and cure, start to blur: “Doctors said autism, Valium, Abilify, sensory processing, seizures, inactive GI, they said tape a bag to her shoulder.” At the same time, the hospital’s structures of thought and experience are highly formalized, even ritualistic. These glassed-in corridors are like aquaria in which parents desperate for answers must keep swimming. (As Kaupang and Cooperman write, “It is our ethical duty not to escape.”) Poems are interspersed with documents from Maya’s medical evaluations, which come to seem like a cage that claims to contain her. She is weighed, measured, tested, recorded, found wanting. On one form, an autism specialist indicates whether statements like the following are “not true,” “somewhat true,” or “very true” of Maya:
Knows own name. [S]
Can use two words at a time. [N]
Speech tends to be meaningful/relevant. [N]
Shows no affection. [S]
Fails to greet parents. [S]
Aware of danger. [N]
Hits or injures self. [S]
Not sensitive to pain. [V]
The mechanical accumulation of these phrases is part of the point. They construct a phantom monument to “normal” development—one in which the child attends to others, demonstrates appropriate love and fear, and so on—compared to which Maya’s childhood is defined by disability, silence, and violence. Instead of revealing her personal qualities, psychological exams yield diagnostic codes:
299.0 Disorder, autistic
315.90 Developmental Delay, NOS
783.41 Failure to thrive in childhood
318.20 Disorder, mental retardation, NOS
307.42 Psychophysiological Insomnia, NOS
296.90 Mood Disorder, NOS
782.00 Sensory Integration Disorder
300.90 Self-injurious behavior, NOS
The codes are used to authorize surgeries and the disbursement of powerful drugs, but it is almost impossible to gauge the effects of these treatments: “Sometimes the extra prescription is intentional… Additional accumulations occur as snow in the darkness of a child.” Moreover, these medical metrics and judgments reveal little about who Maya is. Her many diagnoses add up to an absence of certainty; despite every intervention, she remains “not otherwise specified.” Her parents write: “What is there to say of this child? She lived, lives through this. So did we. We want to know more about her. So do we.”
NOS is Kaupang and Cooperman’s answer to the reductive categories that fail, more often than not, to compass the complexity of their daughter. In place of these rigid formulations, the book offers an alternative architecture of disability—one that makes space for the grief, the uncertainty, and the messiness (both literal and emotional) of life with their daughter. They go into details of the domestic grotesque that polite folks aren’t supposed to mention. For instance, this is how they first tried to feed Maya through a g-tube in her stomach: “Picture quivering forearms yarding on a syringe, bursts of chicken slurry arcing over the kitchen, a highly nutritious rainbow desperate to be eaten.” The descriptions are tactile, humorous, awful. In other moments, they adopt the style of medical checklists, to raise far thornier issues than tantrums or bed-wetting:
_____ reacts spontaneously to a heard word
_____ spontaneously gazes through glass
_____ creates a family of constellated rage
Kaupang and Cooperman’s aim here appears more ambitious than a deconstruction of biomedical rhetoric. On the one hand, they dramatize how these diagnostic methods offer disempowered parents the hope of helping, or even of saving, their children. On the other, they suggest that the impacts of raising a severely disabled child are vast and diffuse—hard to acknowledge, and harder still to treat. After all, Maya is not a monad, but a member of a family.
That family, by the way, includes a second child, Elias—“the son who is absent” and whom Cooperman and Kaupang mention only obliquely. In a single footnote, they apologize “for all this [they are] missing” in his childhood. The slightness of Elias’s role in the book suggests how overwhelmingly his own life must have been affected by Maya and her needs. His parents address him directly, as they never address Maya; someday, when he’s older, it will be for him to judge how they have navigated the family’s tortuous path. In the meantime, NOS is an exercise in self-evaluation—a brutal, unflinching poetic account of parenting under conditions that would reveal the worst in any caregiver:
MOC: …It was Maya’s birthday, and she’d stopped walking. We had to give her enemas because her GI5 stopped functioning. There was an explosion of poop all over the carpet and hallway and it wasn’t the first time and Matthew cussed and cursed and scrubbed the birthday away, and I walked the park loop with Maya mobius-ly as she whimpered and screamed and whimpered and was four that day and there was no joy. No party.
FOC: 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. Weeping and gnashing and plotting the violent act. I was a violent act.
Cooperman and Kaupang’s painfully examined life reveals how much of parental love is based on narcissism or projection. How, they ask, can you watch your daughter injure herself again and again and not connect that behavior to some inner torment—to the feelings that would prompt you to do that? How do you make decisions in the best interest of a child who seems nothing like you, a child whom, on a basic level, you don’t understand? And lastly, they ask: is it ethical, or even possible, to write “words for those who don’t speak them”?
The answer this book—and this reader—ultimately reach is a hard-won yes. “We try not to speak for Maya,” write Kaupang and Cooperman. “We try not to write a book.” And yet, “The book becomes a part of the family by earning it, by showing up again and again.” The book, of course, is its own kind of architecture; its words are scaffolding upholding an illusion of Maya that Maya herself keeps breaking:
It is his building of the child
thoughts and dreams
wholly glass and shatter
the recognition of a frame
To write about “raising” such a child is to acknowledge the irrecuperable loss she embodies, and one’s guilt about that sense of loss—and then to try to move beyond it. It is to speak about Maya without speaking for her. It is to write because silence would imply that our society’s prevailing ways of talking (or not talking) about disability are good enough. And lastly, it is to assert the continuance of parental love even when hopes for the future are slim and much remains “unspecified”: “Maya is real and worth writing for.”
Despite the particularity of this one family’s situation, the central paradox of NOS—that the book is written for someone whom it is impossible to reach through words—raises a central issue in lyric poetry more broadly. In some sense, lyric has always been about absence. Its intimacy is the result of a sly triangulation, in which the reader stands in for an addressee who cannot be accessed directly. Whether addressed to the “cruel fair beloved” of Shakespeare’s sonnets or Dante’s Beatrice, Rumi’s God or Tennyson’s lost friend in “In Memoriam,” or even one’s former self, the poem requires the reader to make this absent Other present—in language, if not in life. Likewise, as a mode of attention that reaches for something without ever reaching it, the poem opens up a space of uncertainty right at its heart. Poets have had many names for this space: Keats called “negative capability,” while Jorie Graham has called it a “region of unlikeness.” Kaupang and Cooperman call it “NOS.” By giving Maya a life on the page, they teach us how to love an uncertainty—not because of your hopes for her, but because she’s yours.
At the end of 2018, I talked with Aby Kaupang and Matthew Cooperman about their book, NOS (disorder, not otherwise specified).
In reading this book, it’s hard not to intuit a parallel between your co-writing of these poems and your co-parenting of Maya. Can you comment on the process of writing this book together? How, if at all, did it seem to mirror the experience of building other kinds of structures (e.g., a life, a family) together?
AK: Honestly, people always want to know about collaborating with a spouse. I think of it like the theory of absolute value, in which the magnitude of a number is the same distance from zero whether it is positive or negative. -7 and +7 are both 7 digits away from zero. Spousal collaboration is like that, equally thrilling and frustrating. Omnipresent and discussional. Full of disagreements and survival, too.
MC: It’s a hard thing to discuss clearly because the book took so long and was its own accretive language. No doubt we learned––slowly, incrementally––to inhabit both life and book, but it moved in fits and starts, very much like our family. Aby was the originary voice of the book, and the early chapters capture her simmering rage at our situation. She journaled it largely in one burst after a particularly harrowing summer with Maya in the psych ward. Much later, literally, after the book was a book––even a finalist for national prizes––I started writing into it, dialoguing with her experience. Early on, it was so painful, so angry. My voice entered as the interrogative. And then there was a long period where the sections evolved into floors, gathering sense as the different periods of Maya’s treatment occurred. But it was challenging to do this together. It was almost as if coming together on our approach to parenting Maya helped the book come together, but that didn’t “clear” until Maya was roughly ten! But then the larger questions that any one child’s treatment leads to became a pivot toward the prose poems, those “theories of causation.” There’s a lot of shifting of point of view in the book, but that feels necessary for the range of experiences that the book produced.
Speaking of “building,” the book is full of architectural tropes, from the chapter headings [Floor One, Floor Two, etc.] to the photographs of hospital spaces to your repeated mention of hallways and elevators. How did you decide to structure the book in this way, and what role did these tropes play in your thinking about it?
MC: The architectural trope is important for a variety of reasons–– documentary, hierarchy of needs, medical organization–– but I think at ground it’s just experiential. So much time in hospitals, waiting rooms, hallways, elevators. There’s a dread to those spaces, but also intense hope, and that’s more or less what we felt, what we feel. And we wanted the book to feel like the spaces it inhabits. If you note the ending, too––on the ninth floor––where architecture expresses the paradox of diagnosis, which is to say the “false clarity” of diagnosis, and the “discharge” of long-term severe physical impairment. We are released into thin air, so to speak.
AK: Speaking of floors as guiding markers, I sometimes wonder if we shouldn’t have placed them in chronological order. The actual experience of a hospital is going from Floor One’s ER to Floor Three for diagnostics, down a flight of stairs to Floor Two for consult, up the elevator to Floor Six for gastroenterology, and so on. The architecture, and therefore the journey, throughout the hospital is rarely linear. It is a deeply disturbing and contradictory experience. We park in the Panther Lot and admire fish tanks in the lobby, and our psych ward room has child-sized furniture with zoo animals, and yet, children and parents weep all around. They are full of angst and fear, and there are HAZMAT containers on the wall next to stenciled pink dinosaurs… the inner and outer contradictions of the space are alarming.
As for discharge, it occurs complexly on the ninth floor or final section of the book. If one actually did discharge from the ninth floor, of course, one would fall and perish. There is no actual “discharge.” The daughter will never lose “The Diagnosis.” We still may lose her… still may lose us. And yet, fortuitously, we are discharged.
One thing I love about this book is how it reproduces extremely non-poetic documents like hospital reports and diagnostic criteria and then uses them as frameworks for thinking poetically about the situations you describe. Can you talk about your decision to incorporate copies of these documents directly into the book? Is some dimension of your parenting experience most clearly—or even exclusively—revealed by documents like these?
AK: I collected the documents over many years. Perhaps the first was the scrap of paper in which Dr. Moe, a kind neurologist in his last years of practice, carried around an old leather doctor’s bag, and met Maya and me at the public clinic. He was as old-school as they come. His voice, as can be inferred through his documentation, was caring and full of wonder as to how Maya’s conditions would progress. He was patient-centered. A few years later, the documents read like code, full of MOC and POC and NOS and ADL’s and iADL’s. We were in the medical model. When we left the hospital after one long long summer, I had a stack of documents, notations, tests, observations 18 inches thick… and yet no answers. In short, I found it impossible to re-create a sense, a nuance, of the radical differences of approach without using the found texts themselves.
You ask about our parenting in terms of the documentation. One doctor noted “the mother was rude.” Perhaps parental advocacy sounds rude? The documents, too, reveal the lows of parenting and desperation. And sometimes, I think I would recall nothing of Matthew’s and my relationship, or our experiences with the medical establishment had someone else not written them down. Such interminable intensity is bound to deposit black holes in the mind. The texts serve as cues.
MC: The hospital is necessarily an existential space. It has an anxious presence that manifests in the body. There’s hand cramp and blurry eyesight and night sweat. But there’s also the physical beauty or shock of those spaces––gorgeous views of the Rockies, or weird “outings” into public art pavilions, sad playgrounds, parking structures. Part of the strategy of resistance of the book was to write into those spaces—to take the spaces, or the questions those spaces produced, back. And the document was then an opportunity.
Formally speaking, these poems range in style and layout from prose-poem paragraphs to diffuse lines that flow or scatter across the page. Was this intuitive, or was there a process for ensuring the variety and dynamism of forms in the collection?
MC: As I said earlier, that’s a hard thing to discuss clearly, because the book just took so darn long, and had so many iterations, or materials “satelliting” around it. It’s safe to say that the prose passages are more mine, and the more open, parataxical structures are more Aby’s, but that’s not always true, and we blended as we revised, line by line. But it’s also a question of how you document a life. How about a period of time? How do you document, on the one hand, both an experience of caring for our daughter, learning about autism, etc., and on the other, the experience of writing the book itself? It’s sort of like ethnography, toggling the view back and forth between subject and object, child and environment. We’re still trying to figure it out.
AK: I confess I’m neurotic about page space. I would hate to be my editor. I’ve sworn I’ll never write another book with a layout similar to NOS. Move one line, drop in a new document or text box, and all the pages need correcting.
Matthew mentioned that the prose pieces often started as his. Generally, that’s true. A lot of prose came also as a result of feedback from editors at various prizes (which we did not win), who stated that they didn’t understand what was going on, or that they wondered if we loved our daughter, or that they couldn’t bear to not know if we survived it all—and how was Maya now? So many questions that the poems weren’t answering. I resisted answering most of those questions. They wanted to know more about Maya? So did I. The confusion of poetry was the confusion of our lives. Matthew convinced me that clarity is not a bad thing. That said, there are still prose passages, mostly our back and forth conversations, that I hate to read aloud. But the book got taken when the prose entered… I suspect, because the prose entered.
What seems to you to be the most common (or most insidious) misconception about people with developmental disabilities, or about their parents?
MC: I think there’s a tendency to lump many developmental disabilities together; “mental retardation” captures that sense so painfully. But a Rhett’s kid is not a Down’s kid, and autism itself manifests in so many different ways that there’s really no definitive pattern, or rather that the “spectral” interpretation is helpful, but only so far. I would hope we might grant anybody the same complex inner lives as ourselves. And that means granting them agency, a particular will and desire.
As to parents, again, I would hope that we might grant them agency; or rather, that we might assume they have some, even when, quite possibly, they don’t. Parents of special needs kiddos are beleaguered, to be sure: the endless paperwork and coding, the hyper-vigilance of care, the lack of sleep. Empathy happens when we realize we might be something other than sorry for them. And that’s the world of para-disability that we want to talk about: how being adjunct to disability is both a liability and an opportunity. Conversely, I’d hope people wouldn’t simply assume that the parents of special needs kiddos are sad. There is so much present joy in our daughter that I don’t know I would know if she wasn’t in our world.
AK: In the medical model, disability is to be “fixed” or “corrected.” It is neither quality-of-life focused, nor does it particularly look to the environment for solutions. It is not celebrated.
Parents are not born as advocates. Advocacy is gained, often, through great pain and confusion, and at an astronomical dollar. And while Matthew and I do not have a disability, being caretakers of a child with this level of multiple disabilities, is to have a hijacked life. A life of limits. Parents of special needs kids have levels of cortisol akin to those returning soldiers diagnosed with PTSD. We are hyper-vigilant… always on the watch tower. Always expecting doom.
And then we think of the things people say to us: she’s an angel; God must think very highly of you to trust you with a girl like her; God knows I could never have strength like yours to raise a retarded child; if you had known she would turn out like this—would you have had her? Or, I love this one: don’t you think all those financial resources that go towards your child’s health care and therapy could be better used on people with promise?
Please don’t say those things.
And please do ask questions. People think that the condition of the child, the condition of the parents, is too uncomfortable to talk about. Or, they are unable to share in the humor… humor that is often dark (but very very funny). We become isolated even in joy.
Do you see your book as an attempt to subvert those misconceptions, or to complicate less nuanced narratives about disability and parenthood? If so, how did you aim to do that?
AK and MC: We certainly hope so, both narratives about disability and about caregiving. The former is perhaps best expressed in the singular; every person’s story is unique. The latter opens the larger question of what we are calling “para-disability”: the experiences of people alongside, and sometimes even in the wake of, those with a disability. Their story is rarely told, likely because they too tired to tell it. Disability, or hindered ability, is a condition most of us will experience at some point in our lives. Ability is always only a temporary position. And then there will be, hopefully, someone by our side, assisting and being altered in the role of para-disability. We want to expand disability studies, which largely focuses on the primary subject, to this sub-category of experience. Again, to clarify, we are not claiming to speak as, nor to speak for, a person with physical or cognitive disabilities. We are expressing our experience as adjunct to this type of care.
On that point: what is it like to write a book of poems—by definition the most linguistically-focused medium—about a person who is (mostly or completely) without language?
MC: Ah, the central paradox, and the most painful. It touches on the question of our proxy, of our speaking for Maya, and the vampirism of using your child as a subject. But then, the book is a messenger, out in front, and its language is Maya’s language, her preferences and requests, perhaps even her hopes.
AK: At Cole Swensen’s AWP reading, years back, there was a woman translating Cole’s poems into sign language. During the Q&A period after, someone asked if Cole’s poems had ever been translated into another language before. Astounding! It seemed so obvious, and yet overlooked. It raises the question: what is one’s conception of language? Only a tongue? Furthermore, what is the essential function of language if not communication? By any form? There are so many, many forms of expression.
But to touch on another point, is this book about Maya? I have just begun to think it is about Matthew and me. About the system and the people in the system.
One thing that comes through clearly throughout NOS is that the experience of disability profoundly alters one’s perspective on language. On the one hand, it introduces you to a bunch of new rhetoric: new acronyms, new categories, new euphemisms, etc. On the other, it invites or even necessitates the creation of new forms of language—to express the strangeness, the pain, the shock, or the joy of new, non-normative experiences. How have your experiences with disability altered your approach to writing poems?
AK: I think of the language of NOS, that there is a diagnosis, a comma, and then the phrase “not otherwise specified.” Succinctly, doctors have negated themselves. They say, “it is, but it isn’t.” And so, we live in negation. Charles Olson writes, “limits are what we are all inside of.” And so we live limits. Semiotically, a word is both signifier and signified. Constructed. We live in constructs. Where we live, we write. We language.
I am teaching some of my pediatric clients with fine motor deficits to bypass traditional keyboarding using speech-to-text word processing programs. This is controversial in the school district. My rationale, however, is how can I get these kids to express what they know, what they want to know, and not frustrate them due to their deficits. Our daughter and many other non-verbal kids use picture-based communication boards (e.g., ProLoQuo) to communicate their needs and wants. A non-normative writing exercise I have given myself is to compose poetry using this program on my iPad. Given this picture vocabulary set, I am trying to write a poem. Or even translate one. So far, I have found that there is not enough nuance.
MC: Shelley famously said “poets are the unacknowledged legislators of the world,” but I like how Oppen revised that: “poets as the legislators of the unacknowledged world.” The experiences of NOS––not otherwise specified––are certainly an expression of something unacknowledged. And that’s, of course, an unacknowledged language—so my view of what’s possible, what is a subject, what is an object, how can I enter a radical alterity, has changed dramatically. The sheer hybridity of the world’s “languages” keeps fomenting a mixed form.
What is specifically different about NOS is its absorption, as you say, of the “new rhetoric” of medicine. That’s uncharted ground, it seems, for poetry, or it seems to be opening up whole new terrains of study.
NOS (disorder, not otherwise specified) is available to order from Futurepoem.
Aby Kaupang is the author of, most recently NOS, disorder not otherwise specified (with Matthew Cooperman, Futurepoem), Disorder 299.00 (with Matthew Cooperman, Essay Press), Little “g” God Grows Tired of Me (SpringGun), Absence is Such a Transparent House (Tebot Bach) and Scenic Fences | Houses Innumerable (Scantily Clad Press). She holds master’s degrees in both creative writing and occupational therapy and lives in Fort Collins, Colorado, where she served as the Poet Laureate from 2015-2017. More information here.
Matthew Cooperman is the author of, most recently, NOS (disorder, not otherwise specified), with Aby Kaupang, (Futurepoem, 2018), as well as Spool, winner of the New Measure Prize (Free Verse Editions, 2016), the text and image collaboration Imago for the Fallen World, with Marius Lehene (Jaded Ibis, 2013), Still: of the Earth as the Ark which Does Not Move (Counterpath, 2011) and other books. A Poetry Editor for Colorado Review, and a Professor at Colorado State University, he lives in Fort Collins with his wife, the poet Aby Kaupang, and their two children. More information at www.matthewcooperman.org.