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Each week the blood flows with more or less of one kind of cell or substance than the week before. These substances go up or down, determine treatment’s future measurement, duration; the land is literally draining away. I must let this flow through me and pass on. Rain catches the topsoil washing it from field to creek to river to ocean.
Where is my body? When is my body? What are the membranes that separate or differentiate my body from others? Where and how do those membranes break down? Where and when does my body cease to be?
Water is a relation rather than a thing. Biological water is also the most restless.
In what ways does my body repeat like those rarest of rivers
repetition flows both ways
in communion with substances streaming in
from the ecological world— the exposure experience.
The exhausted are plastic and adaptable, a mutable river. It is easier to demand happiness than to clean up the environment. Imaginaries and figurations are as vulnerable to redirection as the flows of the river themselves. A river redirected and drained such that it cannot fulfill its responsibilities to provide for its human kin is forced to turn away. The exhausted bend better and more to what is necessary for their having been worn down.
These varied speeds and slownesses, multiple movements, and diverse incorporations of rivers and cancers belie the difficulty of speaking of them in the abstract—as though they were one undifferentiated and amorphous thing the same everywhere and all the time; both finite and inexhaustible; both the same and always becoming different.
The exhausted live as fluidly as the water. Our planet neither gains nor relinquishes the water it harbors but only witnesses its continual reorganization, redistribution and relocation. Rivers and cancers are seen as dead or alive depending on causes and conditions.
To call myself a survivor still feels like a betrayal of the dead. The wells, streams, and fountains simultaneously polluted, the great orbs of the unsaid continue to float through the air river at dawn tasting the green silence. But it is time for a new problem. I feel like another woman de-chrysalized and become a broader, stretched-out me: she has glimpsed the other bank and knows that the light plays tricks on you.
Especially over water and it's hard to tell just how far away the other bank is and whether the undertow is carrying you there or back or whether the earth you thought was solid is in fact moving. Just as rivers in the desert create an abrupt shift from lush to sparse, mesic to xeric. Along the banks and in the drylands, riparian and dry-adapted. I could die of difference or live myriad selves. Anyone who has been half dead can attest to this. Just as those who drink water know whether it is hot or cold.
Here we are, here I am alone, and myself
half of me fallen off half of us gone
and all of us, as ghosts
Or the undying ones, half of us dead and half of myself, nowhere to be remembered. Or to be found floating upon a sea, within a ring of women, like warm bubbles keeping me afloat upon the surface of a sea. I can feel the texture of inviting water just beneath their eyes, and don’t fear it.
Human beings see water as water. A biochemical descriptor, a way of naming. The steady relentless march of the nonself, under the skin of the self. The alien under the familiar, the visible. The sweet smell of their breath and laughter and voices, calling my name that gives me volition, helps me remember.
I want to turn away from looking down. To remember the liquid ground and taste the saliva in your mouth. Notice her familiar presence during your silence. How she is forgotten when you speak, or again how you stop speaking when you drink. And how necessary all of that is for you! You also know that the weed killer is feasting on you. these fluids softly mark the time and there is no need to knock. Just listen to hear the music with very small ears.
Obsessed with pain in ghost flesh I imagine a body-tourism or soma-exchange support system in which a person could temporarily inhabit the sensorium of a person in pain. Through fate and transport. People with cancer traveling to various bodies of water known to be inhabited by animals with cancer. An assembly on the banks and shores of these waters, as a collective consideration of our intertwined lives.
Make peace alongside our resistance, with the reshaped and damaged bodies themselves. Cultivate love and respect, response and responsibility. Other people can see me, and I can see them. Nothing blocks my vision except for my tears.
Tears are only water pain is a fluorescent feeling. Chemo stains burning pee body burden toxic trespass. Everything going into your mouth even the water that you must drink because you are desperately thirsty and because if you don't the drugs will sit in your bladder and corrode it from the inside out. Everything feels like a bad idea the kind that cannot repair itself.
When in pain
any experience of location exists only as desperation
for its end, for surrender to namelessness, formlessness voicelessness and silence
whispered sympathy environmental fate unwanted aloneness and loss of control.
Flow fluctuations. Chemo in semen. Flush twice. Fuck it. Blood is not the only thing that circulates. Shallow aquifers, interbedded lenses of sand and gravel, mothers of rivers. The involuntary use of one’s body as a receptacle for someone else’s chemicals.
These images flow quickly. Pain creates excessive appearance. Biomagnification. Trace your weave back strand by bloody self-referenced strand. Begin to alter the whole pattern. Tears well and fill and overflow and they pass.
Spill report: trace mixtures, transient accidents, a toxic pulse. Waves slosh silt and poison, the bottom edge of a falling curtain. Mortality is a gorgeous framework. Cancer is a rare and still scandalous subject for poetry. I unlearn that tongue in which my curse is written, the way a river carries its current: inscribed or incorporated, written across the surface, or assuming the watery shape of a body.
A river is both water and flowing; do not confuse the water with the flowing. Fish are not in rivers; rivers do not enclose the fish. Fish and rivers world each other, living-in-the- moment, a small resistance to the march of time: to live in prognosis.
I am alive; no,
you are dead.
What is a watershed? Cup your hands together to form a bowl. Now imagine that the seam between your palms represents the lowest elevations. Water that falls in your hands will make its way towards low elevations, forming a stream or river, but water that falls outside your hands will not. The boundaries formed by your hands represent the watershed for your stream.
Time is not separate from you, and as you are present, time does not go away; this would be the same as insisting that water does not flow (the ultimate insult to natural order). Stagnant, deadly water which doesn't flow, doesn't metabolize: a giving up of hope. Bodies of water puddle and pool. They seek confluence. Even in stagnancy they seep and leak. They flow into one another in life-giving ways, but also in unwelcome, or unstoppable, incursions.
Cancer is what is most ferociously energetic. I was given only the noisy half of probability that cancer’s cause is located inside of myself and never the quiet part of probability that its source pervades our shared world.
My skin feels thin. Air touches it on one side, water on the other. Reclamation lagoons overflow like pouring water into the ocean and spreading it endlessly. Invisible chemical fumes are unspeakably substantial, heavier than air. They are not apparent, but they do not disappear.
She concludes that they must be dwelling inside her, in the flows and interchanges between them, like gradients created by rivers in deserts: triumphant mutations; tangible floods of energy, rolling off these women toward me. If I resist or try to stop it, it will detonate inside me, shatter me, splatter my pieces against every wall and person that I touch.
You want nothing to penetrate the envelope of your skin. You resist anything that would connect between the surface of your body and the currents flowing inside—not as an ever- branching tree, but as a braided river, with the capacity to diverge and converge, as events, mutations, genetic and epigenetic alterations; the interconnections between tributaries of the river.
Imagine holding a translucent jellyfish under each of your armpits: as you breathe in, their membranes close inwards to form a tightening circle; as you breathe out they dilate wide open, ever more expansive than before.
These moments and locations of illness are as natural as our fragile, resilient human bodies interacting with the world, all the veins in our bodies extended to rivers, intertwined, mangled. Allow rain to do what it did before buildings, roads, driveways, parking lots, and other impervious surfaces covered the landscape: soak into the earth, fill the soil, recharge groundwater, release flow gradually to rivers and streams.
The concept of disease is never innocent, it is invariably an encouragement to simplify what is complex. Where is your source? Where have you drawn what flows out of you? For me, ebb and flow have always set the rhythm of time. One moment is worth absolutely no more than the other. Multiple in the unwinding of its becoming, robbed of all capacities of self-transcendence, humiliated by fear and agony, I hate pollution and I love my body.
While the individual body might seek to bracket, subdue, or tame these channels and flows, this communal body can not live without them. A fluid, responsive process, restoration requires digging into the past, stretching toward the future, working hard in the present. The movement of rivers and cancers hold the was, is, and yet-to-come together; the flow and flush; immense slothfulness, like frostbite; sedimentation; the saliva in my mouth that enables me to speak.
Inside this work, these stories, the concepts of unnatural and abnormal stop being useful. The unturbid current that must be other people’s consciousness challenges my notion of even what is human, and yet our absolutely alien mental flows (which I converted into power to heal myself) freeze, harden, and evaporate, in warmth and shock and love and concern, lateral becomings, and other people's fears of their own death.
From Informed Consent to Shared Decision Making
Guerrilla Girls (1990) New Year’s Resolution for Public Art Fund’s ‘Messages to the Public’ at One Times Square, in Spectacolor. Image description: A black and white photograph of Times Square. A digital sign mounted on the side of a building reads, in a friendly font: “I will look at / things / I don’t want / to see.” Another digital sign, below, wraps around the building, with text that appears as if scrolling by, reading “LAW….UNOFFICIAL COUNT.” Passersby, cars, and storefronts below set the scene as early 1990s New York.
[...]
A set of underlying assumptions about autonomy and dependence run unchecked through the interweaving of artificial intelligence, medicine, and disability. From legal frameworks to sociotechnical narratives to personal interactions, autonomy is the root logic and the goal. Chilean biologist Humberto Maturana said it very directly: “The fundamental feature that characterizes living systems is autonomy.”
However, autonomy is formed in relation to dependencies: closed systems within which to operate, materials and structured interactions, linguistic codes. A nuanced understanding of autonomy requires examining the nature of these dependencies, as well as the categories and limits that produce multiple inequitable versions of autonomy, leaving us “opaque to ourselves,” as Sylvia Wynter puts it.
As a pointed example, those giving and receiving care may not share a holistic understanding of autonomy. Health workers, patients, families, disabled people, advocates, laws, policies, and standards may each adopt their own partial or provisional definitions of autonomy. These definitions address physical or mental impairment, social or political participation. They may be framed in terms of actions (from mobility to self-care), the skills necessary to perform these actions, or in terms of having coherent goals, and the capacity to make decisions as to how best to achieve them.
Does autonomy seek freedom from dependence, or does dependence make autonomy possible? How does autonomy lead to participation in processes of mutual aid, or interdependence?
Autonomy, as a kin word to authority and authorship, distinguishes the autonomous individual as author, owner of intellectual property. As an exercise of the right to self-determination, autonomy connotes the right to describe the narrative of one’s own life. Made evident by the framing of activist and writer Alice Wong’s Disability Visibility project: “disabled narratives matter and that they belong to us,” as well as the parliamentarian slogan nihil de nobis, sine nobis—popularized in English by the disability rights movement in the 1990s as “nothing about us without us.”
Autonomy is increasingly understood—and legislated—in terms of being in possession of one’s own data, profile, and patterns. As interconnected as our data, and our material relationships to shared environments may become, we are still subject to legal and ethical frameworks premised on bodily sovereignty, where “interdependence is viewed as something preliminary and occasional, but not as an indispensable feature of the human condition”
This chapter provides a critical examination of autonomy and dependence as they are applied in mechanisms of informed consent, shared decision making, explanation and information-seeking. Finally, this chapter will consider emergent themes that trouble assumptions about autonomy and dependence, made evident in clinical understanding of intersubjectivity and interdependence, the use and limits of automation in healthcare, and how consent might be approached as a design challenge for human-computer interaction.
From informed consent…
Consent means informed consent. Information and consent are always already bound together. Even in cases of what is referred to in medical literature as “simple consent,” decisions are made by patients on the basis of tacit knowledge or personal needs, both of which are ever-present sources of valuable information.
What does informed consent depend on? A 2015 workshop hosted by the Institute of Medicine sought to clarify the inter-related notions of informed consent and health literacy. One finding of the workshop was that “Informed consent is really part of a larger patient education/patient decision-making framework.” This framework, the workshop report goes on to explain, is one part cultural, and one part technological. Efforts to improve the experience and efficacy of informed consent may require evolutionary changes for both.
For consent to be informed there needs to be mutual comprehension of what is being consented to. This comprehension, in turn, depends on a shared literacy, a common language, however situated and provisional.
Addressing what is now a widely perceived failure of standard informed consent processes to meet the requirement for comprehension, the Institute of Medicine convening called for a cultural shift, bringing health literacy into focus, “moving from persuasion to pedagogy.” What is learning, in consent?
In their 1986 treatise on biologically-informed AI, Understanding Computers and Cognition, computer scientists Terry Winograd and Fernando Flores proposed a computational system called “The Coordinator.” This system implements a perspective on communication and organization based on the capacity for language to carry over into action, given the right organizational and connective structure.
What they proposed was a variant of speech act theory put forward by philosopher J.L. Austin in the 1950s, which has since traveled far and wide. Speech act theory describes in detail the cases where language not only expresses a thought, but also produces some change in the world. Saying it makes it so.
For Winograd and Flores, speech acts not only produce changes in the world, they produce the world itself, as a self-replicating system: “In using language, we are not transmitting information or describing an external universe, but are creating a cooperative domain of interactions.”
This image of a “cooperative domain of interactions” draws from earlier work by biologists Humberto Maturana and Francisco Varela, where the organized world that makes sustained life possible is framed as a “consensual domain,” to use Maturana’s term. Consent, in Maturana’s very cybernetic usage, is about self-replicating systems, or what he named “autopoietic” systems: for the organization of life to be consistent, commitments need to be made, and remade.
Informed consent depends on continual commitments, through language and action, to the preservation of self-replicating systems. In making these commitments, we are incorporated as members of the system, in “autopoetically instituted, subjectively experienced and performatively enacted genres of being hybridly, human,” to use Sylvia Wynter’s characteristic formulation.
Lucy Suchman, in her response to Winograd and Flores’ language/action perspective, neatly connects the biologically-informed notion of autopoiesis to the machinery of The Coordinator, in its theory and its application, as “a tool for the reproduction of an established social order.” Language and action create a cooperative domain of interactions where consent becomes possible—and in doing so, create a pipeline for standardization, and the repetition of patterns. I mention this to shine light on the pre-conditions for consent (not only autonomy, but the structure of environments and the tools), and to make explicit the fact that patient-generated health data must conform to medical codes, schemas, and categories, indifferent to an emphasis on patient-centeredness, and the reach to include the spectral unruliness of patient experience. Categories have politics.
As Suchman puts it: “The adoption of speech act theory as a foundation for system design, with its emphasis on the encoding of speakers' intentions into explicit categories, carries with it an agenda of discipline and control.”
This is not the embrace, of what Suchman refers to as “the specificity, heterogeneity and practicality of organizational life,” that we were hoping for. People make their own worlds. Their perspective, like “that of bees with respect to their beehive,” may be constrained to the inside or outside of their worlds. Their worlds may be speculative and incomplete, but they are essentially understandable and actionable. They make sense to others as worlds. They work (they are useful) for the people who make them. They are specific, ongoing, and reversible.
[...]
“We literally create the world in which we live by living it.”
“That which we have made, we can unmake, then, consciously now, remake.”
“What is needed is a field that exposes and critiques systems that concentrate power, while co-creating new systems with impacted communities: AI by and for the people,” writes Pratyusha Kalluri in the journal Nature, under the heading “Don’t ask if AI is good or fair, ask how it shifts power.”
[...]
Consent is the negotiation of agency. It is as central a factor of intimate settings as it is in discourse on the use of technology, such as privacy, data use, use of intellectual property. Consent inserts potential symmetry into asymmetrical relationships: it concerns both what we allow others to do to us, and what others allow us to do to them.
The articulation of consent as a legal framework has been a reactive and reflexive process: tragic and unspeakable errors of judgment, discrimination, and systematic dehumanization have prompted each evolutionary step.
In the US, four legal cases between 1905 and 1914 laid the groundwork for defining medical consent as a matter of bodily autonomy. In each of these cases, a female patient sought repair in response to non-consensual overreach by a male healthcare provider.
“The citizen’s first and greatest right, which underlies all others—the right to the inviolability of [their] person” wrote the presiding judge in Pratt v. Davis (1905): “this right necessarily forbids a physician or surgeon [...] to violate without permission the bodily integrity of [their] patient.” This sentiment, echoed ten years later in the ruling for Schloendorff v. Society of New York Hospital (1915), clarifies the premise for consent in terms of self-determination and violation: “Every human being of adult years and sound mind has a right to determine what shall be done with [their] own body; and a surgeon who performs an operation without [their] patient’s consent commits an assault.”