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The fundamental relationships that give melodies their dynamic form are tension and release, suspension and resolution. As a pattern in time, melody works through contrasts, shades, and movements between differing events.
If the mechanics of melody are rooted in difference, it is “a non-binary conception of difference” that is “‘not opposed to sameness, nor synonymous with separateness’,” in Karen Barad’s formulation, quoting Trinh T. Minh-Ha. This melodic, non-binary conception of difference should be remembered as one possible shape of analysis.
Who are the others that this analysis makes me recognizable to? What separates us, and what joins us together?
We share time.
Experiences of illness, and the transformations they entail, “suggest a suspension of time (productivity time, social time),” Mel Y. Chen offers, in their study of animacy as a linguistic frame. “‘Living through illness’” Chen continues, seems to “confound the narrativized, temporalized imaginary of ‘one’s human life,’ for it can constitute an undesired stopping point that is sporadically animated by frenzied attempts (to the extent one’s energy permits) to resolve the abrupt transformations of illness that often feel in some way ‘against life.’”
Chen’s description travels well with notions of crip time, where, “rather than bend disabled bodies and minds to meet the clock, crip time bends the clock to meet disabled bodies and minds.” A notion elaborated on by Allison Kafer, Margaret Price, Ellen Samuels, and others, crip time is characterized by non-linearity, flexibility, attentiveness, mourning, and interiority. Crip time draws from and extends rich traditions of radically re-framing normative temporalities and futurities, particularly those of Queer studies scholars like Jack Halberstam and Lee Edelman.
We share an environment.
Subject to the porous interchange between environmental factors (toxicity, pollution, contamination) and social concepts of illness, disability, and debility—what Chen calls the “interabsorption of animate and inanimate bodies”—environmentally-linked health outcomes trouble the “binary of ‘life’ and ‘nonlife’” while offering a different way “to conceive of relationality and intersubjective exchange.”
This troubling is a necessary aspect of the stories we tell, and carries the power to dispel notions taking shape in both human-centered views of ecology and medicalized views of bodily and mental health. To resist and repair the effects of shared injustices that “reshape and damage all kinds of bodies—plant and animal, organic and inorganic, nonhuman and human,” as Eli Clare’s study of parallels between environmental restoration and medical narratives of disability shows, “perceived notions of normal and natural must be critically examined.”
We share a community of practice and action.
As patient advocates, the AIDS movement fundamentally transformed how clinical research works, establishing patients first-hand knowledge of the effects of disease as “an alternative basis of expertise.” Steven Epstein’s excellent history of this transformation, Impure Science: AIDS, Activism, and the Politics of Knowledge details in depth how “activist participation has done nothing less than change the ground rules for the social construction of belief—the varied processes by which different groups and institutions in society come to believe that a given treatment is ‘promising’ or ‘disappointing,’ ‘effective’ or ‘junk.’
Social studies of patient advocacy, from AIDS to Long Covid, show how understanding of illness moves “from patients, through various media, to formal clinical and policy channels.”
Where incoherent, inconclusive, or conflicting data may forestall clinical interpretation, knowledge built from the ground up brings coherence to evidence and advocacy, and brings individual patients into community.
What narrative studies that place clinical research, drug development, and patient advocacy side by side show is the common practice of emplotment: assembling facts into a narrative structure so that patterns appear to cohere, context falls into place, and illness becomes meaningful.
[...]
Susan Griffin, in What Her Body Thought, recounts her own experience with Chronic Fatigue Syndrome in dialogue with the historical narrative of Marie Duplessis, who died of Tuberculosis forty years before its etiology was known. By drawing a parallel between the two conditions, poorly understood in terms of biological mechanisms in their respective historical moments, Griffin reveals the underlying, non-medical aspects of disease, bringing the social contract that governs illness and health into relief, in which “economy is an extension of the body.”
For those whose collection of symptoms lack the coherence of disease that is expected by the medical community, sociopolitical factors are laid wonderfully bare. As Griffin writes, illness exposes “not just the whirling surface of disparate destinies, but the rootedness of our connections. How the wound of being allowed to suffer points to our need to meet one another at the deepest level [...] the giving and taking that will weave a more spacious fabric of existence, communitas, community.”
[...]
Wendy Chun, writing about the assembling of narrative in the wake of traumatic events, shows that disentangling self and other, past and present, is a non-trivial problem: “Testimony is both an enabling and disabling violence. The intertwining of experience that trauma demands means that testifying is not enough: we must also respond and listen to others’ testimony so that the self does not take the place of the other.” We must preserve and articulate difference. This is where the work of making categories begins.
[...]
I find resonance between Trinh T. Minh-Ha’s interrogation of difference as a constructive factor of identity, and the fullness of Arendt’s concept of action. Continuing, in context, from where Barad quotes Minh-Ha:
“Difference as foreground in my film work is not opposed to sameness, nor synonymous with separateness. Difference, in other words, does not necessarily give rise to separatism. There are differences as well as similarities within the concept of difference. One can further say that difference is not what makes conflicts. It is beyond and alongside conflict. [...] Many of us still hold on to the concept of difference not as a tool of creativity to question multiple forms of repression and dominance, but as a tool of segregation.”
For Arendt, action is the setting of things into motion. It is the push or pull that begins the process by which difference is put to use as an instrument of creative inquiry. Through action, per Arendt, we keep good relations: we forgive, we make commitments, promises. We build—not in the sense of craft or architecture—we build trust: continuities and stabilities. Action shows the plurality, uniqueness, and interdependence of human life.
To be the subject of analysis is in itself an action, a consenting-to. To throw analysis back, invoking opacity, as in Glissant’s use of the term, is similarly active. Opacity is strategic, re-routing analysis, reaffirming boundaries and limits.
If there is a split between being an agential actor, or being the passive object of life events—I cause things to happen, or things happen to me—it is not a separating binary. As a case-in-point, consider the figure of Spect-Actors in Brazilian theater director, organizer, and civil servant Augusto Boal’s Theater of the Oppressed:
“The stage is a representation of the reality, a fiction. But the Spect-Actor is not fictional. [They] exist in the scene and outside of it, in a dual reality. By taking possession of the stage in the fiction of the theatre [they] act: not just in the fiction, but also in [their] social reality. By transforming fiction, [they are] transformed into [themselves].”
Another non-separating binary: internal and external experience, implicit and explicit expressions of interiority. Constructs, in the psychometric use of the term: how we make sense of internal worlds, how we hold one person’s interior experience alongside that of others.
[...]
Anamnesis, a term with roots in Platonic dialogues, is a telling of one’s innate knowledge. It can be thought of as the prior knowledge we bring to new situations. In medicine, it refers specifically to a patient’s account of their health history, in their own words.
Anamnesis, another moment of diagnosis and pleasure:
In the spring of 1996 I had seizures, a feeling like being wrapped in sweetness, like spun sugar covering my eyes, nose, and mouth. An ocean of sound, and falling.
In early summer a tumor the size of a lima bean was removed from my brain. A low-grade tumor made of both structural (glial) and functional (neuronal) cells, a ganglioglioma.
In late summer of that same year the Health Insurance Portability and Accountability Act, known as HIPAA, became law. While HIPAA is now viewed almost exclusively through the lens of compliance with data protection standards, the law’s initial provisions were aimed at expanding access to healthcare and insurance, setting rules for how the insured move between providers in an open market. For me, this was personal, as a person with a ‘preexisting condition’ (an invention of the US insurance industry), HIPAA now offered some measure of protection against being refused coverage outright, as if I were a woodland cabin in fire season.
You take your data with you. What container do you use?
“The natural, proper, fitting shape” of the narrative my data makes may be a melody, or “that of a sack, a bag. A book holds words. Words hold things. They bear meanings.” Ursula K. LeGuin, in her “Carrier Bag Theory of Fiction,” makes a powerful argument for gathering and holding as the right metaphors to use when telling stories about stories: “holding things in a particular, powerful relation to one another and to us.”
The Shape of Capture
The title of this chapter, Analysis Helps us to Imagine Better, can be broken down (deconstructed) into a sequence of problems: What is analysis? How should ideas of helping be framed? Who takes part in the collective us, who is kept out, and how? What are imaginations, or imaginaries? How do we know better from worse?
I live in a house covered by vines (Vitis girdiana, or “Desert Wild Grape” and Passiflora edulis or “Passion Fruit”). I have become familiar with the image of vines gripping the mesh of a screen window, exploratory tendrils taking hold and pulling the grid into warped patterns with the slow force of vegetal growth. I am also familiar with the image of these exploratory tendrils, seen through a screen window, reaching and bobbing tenuously away from the window into open air, where the thin line of the vine appears to break into jagged steps as it crosses behind the screen’s gridded mesh. This image of one pattern (the grid) failing to capture a second pattern (the bobbing vine), is a common visual distortion known as aliasing, and is a well-known problem of many systems of representation: where there is capture, there will be loss. I’m not sure, however, what to call the other image—that of the vines slowly pulling the screen into something less like a grid, more like a warped and bubbly mess. Nature? Arendt wrote that only humans think of growth and decay, nature is just ongoing.
I imagine an image… that shows the visual distortion that happens when I see a vine through the mesh of a screen window. I try to describe the influence of one part of an image on another: a screen’s grid breaking up the continuous curve of a vine. Image description: A grid of nine black and white images, each depicting a variation on the theme of a grid interrupted and warped by a wild vine. Various scales and degrees of aesthetic realism are represented.
I’ve seen it before, but I can’t quite hold an image of it in my mind, let alone create a good representation of it: I am looking out through the mesh grid of a screen window, and I see the smooth tendrils of a vine appear to break into a jagged stepped pattern. Is it a problem of needing to be in motion when viewing the scene? or of being able to focus on two planes at once? There’s something phenomenological here, something about what makes experience and action possible. It’s also simply a problem of sampling, an optical effect named aliasing: the grid of the screen forces a lower resolution onto the curve of the vine. When it reaches my eye it has the shape of a city walk: block by block.
[...]
Ian White, artist, performer, critic, died of lymphoma in October 2013. This detail is significant to me because I have / have had the same disease, and because of the vague block I still experience trying to understand how people die from it. I’ve researched it, I still can’t process it.
Ian wrote about performance, about action and time, and about cancer. On more than one occasion, he wrote about Robert Smithson’s allegorical treatment of entropy and irreversibility as a child running circles in a box of white and black sand particles:
A “sand box divided in half with black sand on one side and white sand on the other. We take a child and have him run hundreds of times clockwise in the box until the sand gets mixed and begins to turn grey; after that we have him run anti-clockwise, but the result will not be a restoration of the original division but a greater degree of greyness.”
To solve this, to prevent this process by which “all systems spiral degeneratively into sameness,” we need to move closer, to get that the grains, as individual quanta, are still black and white: “the analogy only holds for as long as we occupy a fixed position of inviolable, immaterial perception. ‘Greyness’ is the impression of colour from a fixed perspective.”
A shift in perspective, getting really close to what you’re studying is one option, the other is becoming alien to the conditions that bring you into contact with it, moving to different grounds. Sylvia Wynter identifies this place as demonic ground, outside of prior, subjugating categories, “a frame of reference which parallels the ‘demonic models’ posited by physicists who seek to conceive of a vantage point outside the space-time orientation of the humuncular observer [...] outside the ‘consolidated field’ of our present mode of being/feeling/knowing, as well as of the multiple discourses, their regulatory systems of meaning and interpretative ‘readings.’"
I’m puzzling over what Ian characterizes as the double negative of cancer treatment: “something to do, being done.” I get that even in the distress of treatment, in the topos of cancer-filled life, just doing a thing, or saying a word, carries the benefits of self-efficacy, adherence to a routine, and other cascades of self-healing. There are other significant effects to this though, where action produces knowledge and recognition. This, ideally, is what filling out a form does.
Taking on the phenomenology of language, Maurice Merleau-Ponty obsesses on the boundary between thought and speech, and finds ability as the catalyst: “My spoken words surprise me [...] and teach me my thoughts. Organized signs have their immanent meaning, which does not arise from the ‘I think’ but from the ‘I am able to.’" I slide this thought next to political / relational theories of disability, such as those advanced by Alison Kafer and others, in which disability and ability mutually define each other through social and ideological patterns. Conventions of what ability and disability mean arrive even before thought.
The number of times Ian wrote: “What do I know.”
He knew that institutions—museums, for instance—subtract time from objects, preserving them indefinitely in reverent stillness. That is to say, they subtract life. Analysis can, and often does take this approach. Alternatively, respecting its objects’ animacy, analysis may include their movement in its model, or reanimate them.
"If objects that ordinarily are removed from time can have time introduced to them (again) for their own erasure, and this is political, so might the opposite be: a thrown voice or subjects subjected to something like architecture, a split.”
This ‘something like a split,’ like the split between subject and object, is where analysis takes place, a site elaborated on by so many scholars: by Karen Barad in their term ‘agential cut,’ by Donna Haraway as ‘partial knowledges,’ Fred Moten as ‘in the break,’ or Christina Sharpe as ‘wake,’ to name a few of the theories that I have carried with me.
Lauren Berlant also died of cancer, a different type: leiomyosarcoma. Her version of a split was opening up to the inconvenience of attachment and dependency, where “to queer something doesn’t mean just to stick an antinormative needle into it, but to open up a vein to unpredicted and nonsovereign infusions.”
[...]
The other face of analysis is synthesis: the generative and unfixed process of assembling or bringing elements together in a mixture; a composition. Concurrently and iteratively with breaking things down through analysis, “meaning and value emerg in the synthesis of the experience’s subjective and objective aspects,” what you see and what you know, in Vivian Sobchack’s model of embodiment and cinema.
Synthesis, as I am using it here, follows Karen Barad’s call for diffractive, rather than reflexive, analysis of tools, one premised on working the entanglements of categories, frames, subjects, and objects.
[...]
Two-dimensional plate harmonic series as visualized by acoustician Ernst Chladni. Image description: A grid of squares appear hand-drawn in thin white lines on a black background. Thin white line drawings divide each square into a unique pattern, from a simple cross shape in the top left corner, each square appears progressively more complex when moving across the grid, introducing curves, diamonds, star shapes and looping figures.
A hand pulls a violin bow across the edge of a square metal plate to produce an audible tone. As the hand applies increased pressure and varies the angle at which the bow meets the metal, the tone jumps from a low fundamental, through a series of higher-pitched harmonic tones. Grains of fine sand bristle and migrate haphazardly as each new tone resonates across the surface, snapping into quick formations along the nodes of a two-dimensional standing wave. Visual patterns form precisely in those areas where vibration is at a standstill, even as the rest of the metal quivers freely.
If you watch the movement of material like fine sand on a Chladni plate you know the uncanny twitching between harmonic patterns as one steady state transitions into another.
I provide this example, and the ones that follow throughout this chapter, to think with as examples of movement constrained by models—abstract representations that try to capture what is meaningful about a thing. Moving between an original and its model, or even between an image and its description, shows the shape of capture: what is preserved as meaningful, and what is discarded.
More specifically, these models are manifolds, constrained, continuous spaces that hold representations so we can understand their patterns better. Latent space, in the context of AI models, is a manifold, flattening complex worlds into an apprehendable space. Think of constellations in the night sky: the depth of time and space flattened into figures, nodes and edges telling us our stories.
Constraints can be: spectral (an auto-tuned voice striding on intervals), spatial (as tiles arranged to fill a space), temporal (playing with waves crashing at the shoreline), semantic (a rose is a rose is a rose).
Speaking generally, the constraints of a manifold produce a movement like resonance, or a habit: following the contours of a latent space, guiding expressions along the rails of features and relations. Whatever you do, the end result will always be a story with enough coherence to be told.
Sampling across the latent space of a learned representation of handwritten digits to illustrate how “human concepts as thickness, orientation, and digit-specific traits vary smoothly between samples, signaling the latent space effectively captures factors of variation in the data.” Image description: A grid of handwritten white numbers (digits) centered on a black background. Reading across, down, or diagonally through the grid, the digits slowly change, such that each location of the grid shows a digit that is distinctly recognizable as a particular number (6, 4, 2, 0, etc), but bears increasing resemblance to some number further along in that direction.
The Visual Analog Scale (VAS) measures aspects of subjective pain experience (intensity, affective quality) by placing a mark along a linear, continuous line. Image description: a thin horizontal white line stretches across most of the image, against a black background. Each end of the line terminates in a square. Above the squares are text labels—on the left: “No Pain” and on the right: “Worst Pain Imaginable”
Categories divide a continuous space into its harmonics, its areas of motion and its areas of stillness. They guide action into recognizable gestures.
Wong-Baker FACES® Pain Rating Scale. Image description: A horizontal row of five line-drawn cartoon faces. On the far left, the face appears to be smiling. Moving from left to right the faces appear to express progressively worsening moods. The centermost faces appear more neutral, with a flat line for a mouth, neither smiling nor frowning. The face on the far right appears to be weeping, with a sharply downturned mouth and furrowed brow.
The Wong-Baker FACES Pain Rating Scale, designed for patients to select the face that best expresses the intensity of their pain, appears at first to flatten the complexity of subjective pain experience. As a momentary assessment, it doesn’t capture continuity: changes, memories, and anticipations that contribute to what is felt in the instant of questioning. It doesn’t distinguish between the overlapping and inter-relating physical sensations that produce the wholeness of pain, nor does it separate social, psychological, and biological factors. It is only recently that research has shown that the faces are not in fact measuring a fear of questions. However, as an instrument created in cooperation with children, for children, the faces are a model of how to design analytical tools that are accessible and adaptable, with patient needs at the center.
The McGill Pain Questionnaire (1975). Image description: a printed page with a prompt in large, underlined, bold type at the top right: “What Does Your Pain Feel Like?” Instructions are below the prompt, in a block of smaller text centered horizontally on the page: “Some of the words below describe your present pain. Circle ONLY those words that best describe it. Leave out any category that is not suitable. Use only a single word in each appropriate category—the one that applies best.” Descriptive categories are arranged in a grid that fills up most of the page: “1. Flickering / Quivering / Pulsing / Throbbing / Beating / Pounding 2. Jumping / Flashing / Shooting 3. Pricking / Boring / Drilling / Stabbing / Lancinating 4. Sharp / Cutting / Lacerating 5. Pinching / Gnawing / Cramping / Crushing 6. Tugging Pulling Wrenching 7. Hot / Burning / Scalding / Searing 8. Tingling / Itchy / Smarting / Stinging 9. Dull / Sore / Hurting / Aching / Heavy 10. Tender / Taut / Rasping / Splitting 11. Tiring / Exhausting 12. Sickening / Suffocating 13. Fearful / Frightful / Terrifying 14. Punishing / Gruelling / Cruel / Vicious / Killing 15. Wretched / Blinding 16. Annoying / Troublesome / Miserable / Intense / Unbearable 17. Spreading / Radiating / Penetrating / Piercing 18. Tight / Numb / Drawing / Squeezing / Tearing 19. Cool / Cold / Freezing 20. Nagging / Nauseating / Agonizing / Dreadful / Torturing”
The McGill Pain Questionnaire (1975). Image description: a printed page with a prompt in large, underlined, bold type at the top right: “How Does Your Pain Change With Time?” Instructions are below in a smaller type, centered horizontally on the page: “Which word or words would you use to describe the pattern of your pain? Descriptive categories are arranged in a row below, centered horizontally on the page. “1. Continuous / Steady / Constant 2. Rhythmic / Periodic / Intermittent 3. Brief / Momentary / Transient”
The McGIll Pain Questionnaire (MPQ), validated in the 1970’s as an instrument for the self-reporting of subject pain experience, establishes linguistic categories of sensation, affect, and evaluation in order to better understand patterns in both the intensity and the qualities of pain over time. The McGill Pain Questionnaire, and its short-form version (SF-MPQ) are widely used in research and clinical medicine fifty years after it was first made available. Recent reviews of the research using artificial intelligence for pain tend to focus on the same problems of classifying, rather than specifically diagnosing or managing pain.
[...]
Language is changing, local, and variable. For us to be legible to one another, we try to move in the shape of a shared language, adapting to shared settings and needs, but this is not always possible or desirable. Description is a kind of translation that cuts across local variations in language to make an object or experience accessible in a different way. Like speaking poetically about an artwork, description should preserve interpretability (making a latent image understandable), even as it troubles notions of objectivity.
I type out each word on the questionnaire in the image descriptions above, to assist screen readers in deciphering the images, to put a finer point on the limited accessibility of text-based surveys, and as a kind of litany: considering each word in turn, I compare the meaning it activates in my mind with what I recognize about myself in that moment. I wait for a pattern to click into place.
[...]
This questionnaire does not rely on accuracy or precision in a biological or linguistic sense. As it is not a diagnostic tool, the meaning of words, physical sensations, and affects are all permitted to flicker. It accomplishes a more important task as an instrument for communicating, from patient to provider, whether or not a treatment or intervention is meaningful to them:
“Some of these words are undoubtedly synonyms, others seem to be synonymous but vary in intensity, while many provide subtle differences or nuances (despite their similarities) that may be of importance to a patient who is trying desperately to communicate to a physician.” [italics mine]
No continuous space is without these pockets of suspension, and no division of continuous space into a harmonic series fully captures the anxiety of hovering outside of, or along the edge of a category.
A flowering focus on a distinct infinity
“Form does not necessarily achieve closure, nor does raw materiality provide openness,” the poet Lyn Hejinian writes. It is through the construction of ‘open’ forms (approaches to making and writing that aim to preserve multiplicity in their experience and interpretation, for example) that the specificity of concrete, material, life is made accessible, as “a flowering focus on a distinct infinity.”
“Is there something about the world that demands openness?” Hejinian prompts us: “Is there something in language that compels and implements the rejection of closure?”
Maybe a rhetorical question, but there are reflexive critiques to be made. There is something in language that rejects closure, but who’s language is this? “Settler colonial knowledge is premised on frontiers” and “the felt entitlement to transgress these limits,” Eve Tuck and K. Wayne Yang spell out in R-Words, Refusing Research.
Placing a critical frame around the pursuit of sensitive knowledge from vulnerable populations, Tuck and Yang interrogate damage-centered narratives as a primary axiom of social science research, where “the subaltern can speak, but is only invited to speak her/our pain” The authors turn to bell hooks, who animates the power gradient that threatens to bind researcher and subject: “No need to hear your voice when I can talk about you better than you can speak about yourself. No need to hear your voice. Only tell me about your pain. I want to know your story. And then I will tell it back to you in a new way. Tell it back to you in such a way that it has become mine, my own. Re-writing you I write myself anew.”
[...]
In mathematics, incommensurable refers to two quantities that don’t share a common measure or standard. They can’t be expressed as a ratio, they can’t be compared. A wild example that sticks in my mind: hope is incommensurable with reality.
The knowledge and expertise we derive from our specific experiences can be thought of as, at times, incommensurable with that of others. Don’t even try to explain. When speaking across gradients of power and vulnerability, such as between patients and providers, it is important to acknowledge how incommensurability affects our capacity for mutual recognition. My oncologist warned: I cannot tell you what cancer treatment is like because I haven’t tried it myself.
[...]
Open worlds are good, as are recognizing limits. This is the paradox, I’ll name it fatigue—not just of the body but of action and speech, of making one’s latent self understandable.
Assumptions about research that forget fatigue eventually hit hard limits. Shaped by setting, duration, resources, language, our lived experience, the tools and actions available to us, the amount of energy and attention we have in reserve, any question can be unanswerable, any decision can be undecidable.
This is as true for very abstract, general problems as it is for very concrete problems, including those indicated by material, mechanical, or social relations, what a body can do, or what one person is comfortable disclosing about themselves to another: A survey doesn’t produce insight if the subjects are too exhausted or alienated to answer questions right now.