Primitive way country come look inside

We do not write this from a place of damage, explanation, argument, or defense. That place seeks to subvert the gaze of suspicion, causing bodyminds to brace themselves against relentless demands for proof, breaking into shards, or climbing into silence, attempting to show something of themselves that will be deemed as worthy, believable, and true. No. We are writing from relational wholeness, from a place of embrace and trust between us.

By opening our writing in this way, we indicate our awareness that, despite our best efforts, we are up against something. Something large, at times seemingly immovable. Something that oppressively squints with suspicion at best and actively harms at worst. We also write against a backdrop of increased incarceration of disabled and mad people [1,2].

For this something to fall away requires a foundational shift of perception. From the margins of perception is where the poetic force of art bursts forth. It is there also where some of the best listening and communication between us has arisen. But first, who are we?

Ysolde Stienon is a disabled poet with Rett syndrome. Marina “heron” Tsaplina is a disabled performing artist with type 1 diabetes. We discussed this approach of self-identifying via naming-by-biomedical-diagnosis and had differing views about it. Marina has done much artistic and scholarly work on unnaming [3]: releasing the biomedical name and the biologically reductionist world it manifests to let new names, descriptions, and life-worlds arise that more fully describe her disabled embodiment. Alternatively, Ysolde felt it is important to claim the biomedical name of her diagnosis, for her to write and approach our work together from the position that it marks for her.

Our differing relationships toward biomedical naming point to different positions of systemic and cultural access to voice and agency. We are addressing this directly so that we don’t create a false impression of a horizontality that erases the unequal markings of power. Ysolde and Marina’s relationship takes place within, amidst, and through systems that exert disciplining power on both of us. While ableism and the medical gaze [4] have marked us both in significant ways, medical and state systems mark Ysolde’s daily life more acutely. It is for this reason that Ysolde claims the biomedical description of her embodied life. While Marina now refers to her disability as that-which-is-named [Type-1-diabetes] [5], Ysolde chooses to speak back from within Rett, to leave new imprints and associations with the name, to break its diagnostic borders from within.

Why? At least in part because “non-speakers are being suppressed around the world and deserve to have their words amplified” [6].

Ysolde’s access to the world of verbal communication is through Tobii Dynavox eye-gaze technology, which connects to a computer program called Communicator 5 (Fig. 1). Tobii tracks the foveal attention of Ysolde’s gaze through pulsed infrared light (IR), which leads a red cursor on the screen to select different pre-programmed buttons based on her gaze.

Ysolde’s support team edits the buttons in the Communicator 5 on a regular (daily and weekly) basis. Changes (additions, redesigns, etc.) are made in preparation for specific activities, classes, conversations, etc. that Ysolde participates in. Typing sentences letter by letter through one’s eyes is not feasible, so her Communicator is an evolving collection of thematically arranged words. It’s far from a perfect system— imagine using only your eyes to search for needed words within an always-evolving labyrinth of computer pages.

The verbal world that Ysolde has access to thus emerges from what is entered into the communication boards. This makes the Communicator a highly political space. There is also a critical gap between thought and words for Ysolde. The technology is not a bodymind-reader; Ysolde has to exert energy each time to find the sequences of words that will come close to representing her thoughts.

When Ysolde’s gaze arrives at the button of her choice, the computer voice will (usually) speak the selected words or sentences out loud. Early in our collaboration, Marina asked Ysolde what her relationship is to this computer voice. Below are Marina’s notes from that conversation:

It’s important to note the following about this moment:

Ysolde listened to Marina read the above description of “Communication Moment #1” and confirmed its veracity. This reflective practice is one that we use all the time, to ensure that any descriptions that involve Ysolde have her active input, consent, and agency. For example, the choice of writing “Ysolde chose” was discussed and approved by Ysolde. Marina asks whether her description is aligned with Ysolde’s perception of the moment, or if there is anything Ysolde would change, add, delete, etc. It is a time-consuming, imperfect, and essential process.

At the same time, there is a clear imbalance in this process. Even with Ysolde’s input after the fact, the description of “Communication Moment #1” is written from Marina’s perspective. Marina is in a position of power as questioner, observer, and describer. This led us to wonder how to level the playing field and find/create processes where Marina’s position as describer is removed or minimized.

In regard to speaking fully for oneself, it’s important to emphasize how much of the communication in this conversation happened outside of the technology and outside of verbal language. The Tobii eye-gaze and Communicator 5 technologies (Fig. 2) played an important role at key moments that allowed Ysolde to describe and clarify her thoughts, but much of the feeling and communicativity of the moment occurred rhythmically and energetically, the meaning emerging between us. Our affective, speaking bodyminds [8] were in an intimate communicative dance. Unlike the myth of objective observation [9], which enacts borders instead of relations, the relationship of trust between us is the primary foundation for our communication. Without this, both technology and communication can become forms of ontological assault, a concept discussed in more depth below.

Before writing any further, Marina read aloud this introduction to Ysolde, reading with pause for Ysolde’s vocalizations, shifting energies, and expressions of immediate response as she listened. After finishing, Marina asked: “Ysolde, does this feel respectful of you, of our work together? Does it feel true to our process? Is anything missing from this introduction? What are your thoughts, feelings, impressions?” These questions entered the ground between us as seeds. And as with all seed planting, what comes after is the time of waiting, a time that Ysolde taught Marina—is perpetually teaching her—to trust.

This in-between ground-time is foundational to our communication. Ground-time emphasizes the grounded fleshiness of the temporal space, an understanding of time that is embedded into the relation between bodyminds—body-minds that are made of flesh and dreams, flesh and dreams that are made of earth, memories, histories, sensations. Ground-time is connected to crip-time [10]: When time is embodied, there is no abstract, predetermined “right” amount of time for something’s occurrence. The ground-time between us at this moment was perhaps 15 minutes, but that is a very rough guess. Marina would check in every few minutes with Ysolde, who wasn’t yet ready to respond and engage with the Communicator. This was a large volume of content to take in. At some point, to bring the essence of the writing back to fresh awareness, Marina reread the first and last sentences of the first paragraph of this article aloud: “ ‘We do not write this from a place of damage, explanation, argument, or defense,’ and ‘We are writing from relational wholeness, from a place of embrace and trust between us.’ Ysolde, what do you think? Does this feel true by you, this approach to the storytelling about our project?”

“Weighty..striking…suggestive. weighty… strong..descriptive……..forceful” (Fig. 3). (The varying periods are a way to point to the rhythm between the words.) Ysolde also opened page after page in her Communicator of poets and poems she studies in her poetry classes: Nikki Finney, Ada Limon, Rita Dove, Tongo Eisen-Martin, Kimiko Huhn, Marie Howe, Dunya Mikhail. While the frequency and duplication of these open pages may have been a by-product of the Tobii eye-gaze accidentally catching Ysolde’s eyes in a way she didn’t intend, Ysolde navigating to the poetry pages of the Communicator was a marker of meaning.

The Communicator program is based on linear logic. It’s like a “box within a box,” says Constance, who is a fellow artist and Ysolde’s mother. The essence of the system is, “Here is a box—you can put words or images into it. When you open that box, there’s another box in there. It is a linear system.” Yet thought is not linear; our thinking is not a box within a box. Thought is associative, responsive, embodied and particular to each person and context. So how to create access for Ysolde to verbally express divergent, creative thinking through what is essentially a series of linear boxes?

Cripping technology references how technologies are/can be altered when access and the brilliance of disabled people are centered in their use and design. Below, through the remaining four, intentionally chosen communication moments between Ysolde and Marina, we show how the Communicator boards are designed to provide Ysolde access to nuanced verbal expression, how she improvises with them to express humor and abstract, associative, poetic thought, and how this differs from how the technology is typically used. Our larger task is to attempt to provide a glimpse of the vastness and nuance of embodied communication and to ask what would happen if embodiment were the groundwork from which communication-assistive technology design and discourse emerged.

Our communication moments are embodied. Meaning emerges through rhythmic and energetic undercurrents that frequently precede verbal expression. How you as the reader perceive the word embodiment will impact your understanding of how Ysolde and Marina are working. Embodiment is not just a word; in our work, it is how body, mind, earth, history, politics (racialization, gender roles, etc.), emotion, thought, feeling, sensation, spirit, and dreams—the physical, the structural, and the poetic [11]—come together and split apart. The affect—or “energy”—of a moment emerges from endless configurations of these embodied forces in the relational space between us. This multifaceted way of thinking about energy differs from the medically linear “physical energy” that Ysolde had previously been asked about, pictured in the screenshot shown in Fig. 4.

An early source of inspiration for our work was choreographer Anna Halprin’s visualization of the “choreographic score” of her community dance piece In and On the Mountain. While it’s not clear at what moment(s) in the participatory dance she made this visualization (Pre? Post? During? Throughout?), the drawing shows the movements, shifting energies, and relationships in the choreography. It is a form of notation and script writing (Fig. 5).

Early on, Ysolde and Marina established an expansive vocabulary for describing the communicativity of our communication moments in terms of the poetics of embodied energy (Supplement 3). Our communication holds the right to opacity [12]; there is never a forcing or demanding of clarity. This freed us to go wherever the moments took us.

This moment documents an early turning point in our work. A brief contextualization is needed for its gravity to be legible At the start of the project (January–February 2023), Marina thought that speaking to several of Ysolde’s long-term hired and family caregivers about how they perceive their communication with Ysolde would be helpful for the project. These conversations, as intended, took place with Ysolde present. On one hand, these were needed conversations: Several caregivers mentioned how this was the first time they had a chance to reflect on their caregiving experiences. Yet what also occurred were conversations about Ysolde right in front of her, where Ysolde had minimal ways of intervening into what was shared or not shared about her, including some very personal and sensitive information. She also heard herself being described, oftentimes as if she were not present. To be clear, Ysolde was not passive. She asserted her agency and response at specific moments effectively, powerfully, poignantly. Yet it became very clear that Ysolde’s privacy and integrity had been unintentionally compromised. What follows is documentation of a moment that took place where Ysolde and Marina reflected on this error in the process:

This brief description, written within an hour of when this “Communication Moment #2” took place, fails to capture the energetic choreography between us. What is absent from those sentences are the rhythms, pauses, movements, spaciousness of the emotion, feeling, and thought—the dynamics that created the intensity and magnitude of embodied communicativity between us within this deep-water ground-time. Honoring that our communication has the right to opacity means not forcing silences, breaths, pauses, or gestural rhythms to resolve into resolute knowability. Instead, they emerge and sculpt the surface of a communication moment into subtle expression, becoming absorbed into ground-time and re-emerging, in one form or another, as response (which is only sometimes verbal).

This moment, by intent, includes no video recording or photographic documentation. What is and is not made publicly consumable is a very important deliberation at all phases of this project, this writing, and our creative collaboration.

The specific fraught moment that led to this conversation was when a caregiver shared that Ysolde had previously been “overmedicated.” This was shared in the flow of the conversation, without preparation and without Ysolde’s consent. Her family suspected that she was over-medicated; it took several years of advocating to her medical team for a medicine change. It was shared that Ysolde’s communication and expression changed and opened when the medications were changed/decreased. Marina did not know how or if this had been previously discussed with Ysolde. Nor did Marina know how Ysolde would describe her experience of this, what it meant to her, if she was even ready or willing to discuss it. The deep waters of “Communication Moment #2” were us reflecting on this and other difficult dynamics that had emerged during these conversations. Shortly after the events of “Communication Moment #2,” we were invited by disabled performance artist Petra Kuppers to contribute to her Crip/Mad Archive Dances project. In Kuppers’s words, this project “addresses disabled and mad presences in asylum spaces and in dance archives through participatory performances grounded in disability culture” [13].

Kuppers’s invitation was to contribute to the Crip/Mad Archive a video of a movement gesture that embodies a disability experience related to medical incarceration. We watched videos contributed by other disabled artists of their experiences interfacing with medical and psychiatric systems. For example, Elisabeth Motley offered a movement gesture of “opening at the wrists and ankles.” She transformed her memory of being tied down by four-point restrictions in a psychiatric institution into a movement where ankles and wrists circle around one another, gradually widening and opening, thereby energetically releasing the lasting imprints of those marks.

This video [14] is our contribution to the Crip/Mad Archive. It starts with Marina asking Ysolde whether she had known that she had been at some point “overmedicated.” Ysolde answers “yes” several times, then Marina manually resets the communication board so that the technology doesn’t keep repeating Ysolde’s previous responses. We then transition to Ysolde offering a spontaneous gesture of response, contributing to the Crip/Mad Archive a gesture of a feeling of freedom from overmedication. This video is purposefully not edited; the ground-time between us is kept in full.

The following week, a beautiful moment of crip-magic occurred as we rewatched our Crip/Mad Archive video contribution [15]. Ysolde began responding to it by navigating to a communication board that included the phrases bodily integrity and narrative imagination. Ysolde’s response became a kind of poetic song cycle, with a circling series of phrases. Marina grabbed her iPad to record this meta-DJ response moment (Fig. 6).

Ysolde and Marina are sitting next to one another, watching a recording of themselves from the week prior. Ysolde is responding in real time to that video as the Communicator voice technology stops and starts the video playback as Marina records, moving the iPad back and forth between the Communicator board, real-life Ysolde and Marina, and the video recording of us on the adjacent computer screen. As Ysolde adds new words to her response, the Communicator starts speaking the phrase from the beginning each time. It becomes a circling poetic phrase that grows a new segment with each of Ysolde’s additions, overlaid over the video playback. This is a vivid example of how Ysolde will break out of the linear logic of the Communicator program and create poignant expressions by finding words that were initially entered for a different purpose (e.g. philosophy class) and weaving them into new forms and descriptions for new situations through improvisational play.

Our next moment took place at the New York Public Library for the Performing Arts for a participatory community workshop of the Crip/Mad Archive Dances. Artists who had contributed to the archive led participants through their gestures, sharing and embodying one another’s movements.

While repeating a choreographic gesture is not accessible to Ysolde, Marina had told Ysolde that she would meet and improvise with her wherever she was at the moment of the performance. Ysolde was quiet and somewhat publicly withdrawn for most of the day, and Marina did not know what to expect.

The participating artists gathered outside in a circle to set and share our intentions for the evening. We didn’t receive this prompt ahead of time (a missed access opportunity for Ysolde), and Ysolde chose to not offer anything during this intention circle from the existing Communicator boards. Marina spoke her intention of releasing the pressure of expectation from Ysolde and herself, to be with Ysolde in the participatory performance with the kind of intimacy and nuance that exists during our one-on-one conversations. For us to be allowed as much ground-time to occur between us and the audience as was needed, for us to be open and ready to receive whatever arises, and not feel rushed or pressured by expectations of response. To be with what is.

At the opening of the workshop, Kuppers invited all in attendance to playfully engage with the library’s dance archive: We each chose a random book from the stacks, opened to a random page, and chose the first word our eyes saw to accompany us on our workshop journey. Ysolde and I chose a bright red book, and the word-seed that found us was when.

When our turn to lead our participatory gesture came (Fig. 7), Ysolde was quiet. She was leaning into a library chair with arms gently crossed. Marina knelt on the floor next to her and echoed her energy and pose. Both of our bodies were parallel to the audience, and the task of releasing the pressure of the expecting eyes settled on our skin. Release the expectation to prove response, to show thought beyond the thought happening in this moment, to be anything more than we are in this moment. “Our book word-seed was ‘when,’ ” spoke Marina into the microphone, eyes half-closed. “What would happen if all expectations from that word fell away?”

Everyone in the audience was echoing Ysolde’s embodied pose. Marina looked over at Ysolde and saw that though her eyes were facing downwards, they were open, and she was listening. “Ysolde, would you like to add any verbal response from the Communicator?” Ysolde gave a clear (though perhaps nearly imperceptible to a broader audience) shaking of her head. No. “That was a clear no,” Marina spoke into the microphone, responding to the questioning eyes that may or may not have been there.

We could have gone longer, deeper into that moment, continuing to release ourselves from the assumptions, expectations, and distrust that create the pressure of when, to let the questioning perceptions—present or remembered—that danced in the air around us to settle, decompose, and become something else. Nonetheless, we achieved an honoring of the truth of that moment’s ground-time, an embodied being-with in a public setting that we had previously never reached. This ground-time was shaped by the relational dynamics between Ysolde and Marina, interwoven with the energies and thoughts of a small group of witnesses, majority fellow crips, in a loving embrace (Fig. 8).

Releasing ourselves from the expectations of when is an act of refusing ontological onslaught, where the technology becomes a tool of interrogation by people who do not trust Ysolde’s thoughts. Too often, if she doesn’t choose the “right” button, in the “right” amount of time, with the “right” response, her existence as a thinking being is invalidated [16]. Even if the Communicator could be developed to be responsive to the multiple embodied inputs that constitute “communicativity” (breath, pause, rhythm, etc.) while somehow maintaining Ysolde’s freedom to choose nondisclosure, to not be tracked—all of these inputs are mere isolated pieces of embodied communication that is first and foremost relational. The technology can never replace the relationship(s) through which the communication is arising.

Ground-time is the space of absorption between cause and effect. Marina’s conservatory training in physical theater with master teacher Kari Margolis trained her to think of each action and response during a performance in four phases: cause, absorb, effect, transition (into the next cause). The absorb between the cause and effect is a space of great possibility. It is here that thought, emotional gravity, and the meaning of a moment is revealed. The communicative universes contained within the bodily ground-time of our communication are not registered by the Communicator. There is opacity in these moments, but they are not opaque [17]. Allowing them to unfold, grow, and become what they want to be requires a quieting of expectations of right and wrong, calling for an embodied listening and attunement to the mysteries of how the earth—and all who are connected to the earth—speak. Above all, listening to ground-time requires trusting another’s personhood [18]. Releasing when is undoing “needing to explain oneself under the threat of exclusion” [19] that disabled people so often face.

Constance, Ysolde’s mother and assistive technology provider, was the one who initially radically rethought the design of the Communicator 5 communication boards. Otherwise, Ysolde would only have had access to symbol-based communication. While reviewing the history, philosophical origins, and ideologies behind the development of augmentative and alternative communication (AAC) technologies is beyond the scope of this article, it is important to note that the Picture Exchange Communication System (PECS): Steps for Implementation module by the National Professional Development Center on Autism Spectrum Disorders [20] concludes with the guidance of “applying the picture symbol system to a voice output device if the learner is not showing progress in vocalizations.” According to PECS, if a person does not verbally vocalize, they should only have access to symbol/picture-based communication.

In Constance’s words, “If I would have left the Communicator design according to how these systems (medical, academic, etc.) evaluate Ysolde, she would never have had access to writing poetry.” To this, Ysolde responded “Comparative anatomy” and “inland river valleys”. We were reflecting on Constance’s words, and Marina asked Ysolde whether to include them in this article. Think for a moment, dear reader, of how playful, expressive, and multi-layered Ysolde’s response is to what Constance is saying, against the force of discrimination and misperceptions she faces. “That is true,” Ysolde responded, and smiled. Then, “It doesn’t matter.” “That’s me.” The ground-time between Ysolde and Marina in the moments that compose this paragraph [on 21 November 2023] was short, seeds sprouting immediately, the circle of communication between us held by our relationship, the Communicator facilitating Ysolde’s verbal thoughts with fluidity.

There are some deep-seated beliefs in the dominant European and North American scientific tradition and its resulting technologies. These guiding beliefs form a philosophical groundwork [21] that is assumed to be factual, including the construction of a hierarchy of intelligence that prioritizes narrowly defined forms of human intelligence as the most advanced. By contrast, much of the diversity of human intelligences, as well as the intelligences of the more-than-human world (animals, plants, soil, water, molecules, etc.), become demoted—de-authenticated [22] to being less-than, viewed as being, in essence, “intellectually disabled.” Based on such a hierarchy, capacity for thought must be proven by a narrow set of terms for a person—human or not—to be permitted entry into the kingdom of conscious intelligence, so as to become someone who holds both the capacity to know, and to be knowable.

Informed by disability justice and anti-coloniality [23], our work emerges from a foundationally different groundwork. Namely, that there is no being, no entity in this world, who does not, in one form or another, speak for themselves. From this groundwork, the important question is not whether a particular living being holds intelligence and the capacity for thought, nor where in a supposed hierarchy of intelligence they fit. The question that instead asserts urgency becomes How do we listen to perceive the speaking brilliance all around us?

While some are quick to attribute consciousness to artificial intelligence systems, we culturally have yet to acknowledge the diversity of intelligences of the majority of the living world [24]. To do so would require renouncing the myth of the primitive [25].

Marina recalls choreographer Liz Lerman to have stated: “No one understands what the body knows.” The expansive way of perceiving embodied communication and ground-time that we have illuminated and described through our collaboration challenges the technological signal-to-noise ratio. With so many facets of potential communicativity, demoting certain inputs to “noise” and not “signal” removes entire universes of potential sources of meaning. It refuses them entrance to absorption into ground-time and for their emergence, in one form or another, as response. Simply because someone does not declare themselves to you does not place them outside the realm of thought. There may be ambiguity, yes, but there’s also clear waves of expression. It is never a forcing or demanding of clarity. Illegible does not mean incommunicative. Begin from a place of expansive wholeness (signal), not exclusion (noise). Begin from a place that will allow you to listen to ground-time.

The question for assistive communication technology developers becomes how to design tools that allow maximum flexibility for improvisation, to allow abstract, nuanced, poetic choreographies of expression—verbal and not—to emerge, while critically maintaining the user’s freedom to choose nondisclosure, of opting-out. Verbal responses are not the authoritative totality of communication but rather accompaniments to, or at times revelations of, a vastness of communication that no human beings or technologies can ever fully comprehend.

But Ysolde’s poem says it best: