The Problem: Seeing

“In telling you all of this in this way, I am resigning myself and you to the idea that parts of my telling are confounding. I care about you understanding, but I care more about concealing parts of myself from you. I don’t trust you very much. You are not always aware of how you can be dangerous to me, and this makes me dangerous to you. I am using my arm to determine the length of the gaze.”

–  Eve Tuck and C. Ree, A Glossary of Haunting

“We clamour for the right to opacity for everyone.” – Édouard Glissant, Poetics of Relation

Why are we so set on seeing? I have always wanted you to see me, just not to look at me. I want to make myself visible, but not public[2]. I know that this will not help us to Understand one another – that is the point.

1.     One-point perspective

This is a work of conceptual art.

This is an optical illusion.

This is a sketch.

 This is a trap.

The first thing they teach you in art school: draw what you really see, not what you think you see. What this means is that in order to render an image ‘realistically’, you must practice (repetition, repetition, repetition) overriding the lifetime of shortcuts you have learned which fill in your sensory gaps with information that you logically ‘know’ to be true. For example: that shadows are black, a cylinder is two circles connected by parallel lines, or that all four legs of a table are the same length. In drawing, logic is a barrier to effective communication (or at least, to a certain kind of communication). It is the explicit manipulation of a shared misperception which creates the desired outcome – the artist is always aware of this manipulation, the viewer may or may not be.

2.     Two-point perspective

This is a diagnostic assessment.

This is a pathological condition.

This is a cry for help.

 This is a trap.

Psychologist Hermann Rorschach thought that understanding the other was possible not through analyzing what one says, but how one sees. His infamous inkblot test, which promised to make an individual’s thought process visible by decoding their unique patterns of perception, rests on the basic premise that “seeing is an act not just of the eye but of the mind, and not just of the visual cortex or some other isolated part of the brain but of the whole person”[3]. To make visible the mind at work was the first step in identifying its pathologies, and therefore, to healing them.

The scientist/psychologist imagines they decode what they see to produce knowledge about the world and the self; the artist works in reverse. Because I am an artist, I know that seeing is thinking[4] (but so is everything else). Because I am an artist, I also know that to see is to misunderstand: perception is a mainly psychological, not physical process[5].  

3.     Three-point perspective

This is a work of critical theory.

This is a manifesto.

This is a warning.

This is a trap.

These days, I keep wondering if greater visibility is really the answer it is always being sold to us as. As though ‘society’ might be vaccinated against what is unintelligible to it by slowly building up its tolerance/understanding through repeated exposure. I keep wondering about why visibility and Understanding are always being made into synonyms. As though it is the unintelligibility of difference which makes it inherently dangerous, and not something more fundamental about that society.

The voracious desire for Understanding is in itself, also violence. Who looks? Who is only seen? I don’t accept that ‘we fear what we don’t understand’ as the easy justification for all of these hungry eyes seeing like a state, seeing like a cop, seeing like a colonizer[6]. Conflating seeing with understanding is only about fear to the extent that fear is about control. ‘We’ fear not what we don’t understand, but what ‘we’ don’t control:

“If we examine the process of "understanding" people and ideas from the perspective of Western thought, we discover that its basis is this requirement for transparency. In order to understand and thus accept you, I have to measure your solidity with the ideal scale providing me with grounds to make comparisons and, perhaps, judgments. I have to reduce… Accepting differences does, of course, upset the hierarchy of this scale. I understand your difference, or in other words, without creating a hierarchy, I relate it to my norm. I admit you to existence, within my system. I create you afresh - But perhaps we need to bring an end to the very notion of a scale. Displace all reduction…Widespread consent to specific opacities is the most straightforward equivalent of nonbarbarism. We clamor for the right to opacity for everyone.”[7]  

Nothing about this world seems very transparent to me, and I am tired of trying to rebuild myself into a glass house of one-way mirrors in order to exist in it. If there is to be a cure, let it be what cures me of my overwhelming need to be seen and heard and Understood. If there is to be a cure, let it be what cures me of my violent desire to Understand the other, which I do not yet know how to separate from the colonizer’s controlling impulse.

Until we find this cure, mutual opacity (and mutual misunderstanding) is safer for us both.

This post is part of a month long series supported by the Canada Council for the Arts exploring the topic of mis/understanding and translation of neurodivergent knowledge, asking: what embodied neurodivergent knowledge is not (or perhaps should not be) translatable? What kind of relationships might we build if we begin from the assumption that we will not be able to understand one another? What might happen to our patterns of communication, if understanding of the other is not our ultimate goal?

Some of the thinking of this blog series has been translated to the short film, Lost in the Reeds.

[1] Ruth Wilson Gilmore, A Possible Geography of Light at Dusk.

[2] “The art of making visible without making public corrupts the neat web of conceptual methodology that the postcolonial critic learns during academic training. It turns presentation into a confrontation. It is the move that renders one exposed in the moment of exposure because by breaking the polite/police rules of engagement, it also renders the rule-breaker unprotected by them.” Denise Ferriera da Silva, Reading Art as Confrontation. 

[3] Damion Searls, The Inkblots: Hermann Rorschach, his Iconic Test, and the Power of Seeing.

[4] As Rudolf Arnheim argues in his 1969 classic Visual Thinking: “seeing doesn’t precede thinking or give the mind something to think about, it is thinking.” Arnheim “showed how “the cognitive operations called thinking”—exploring, remembering and recognizing, grasping patterns, solving problems, simplifying and abstracting, comparing and connecting and contextualizing, symbolizing—do not take place somewhere above and beyond the act of seeing but are “the essential ingredients of perception itself.” More than that, organizational problems such as grasping patterns or the character of a complex phenomenon can be solved only in the act of perception: a connection cannot be analyzed or thought about without it first being seen; the intelligence is in the seeing.” (cited in Searls’, The Inkblots).

[5] In The Inkblots, Damion Searls relates the findings of an experiment co-developed by Stephen Kossly, one of the leading researchers into visual perception, which suggests that “to see is to act as much as react, put out as much as take in”: “almost all of what your brain does when you see something is the same—or is at least in the same area of the brain—as what it does when you visualize something. The retina actually picking up light or not is only 8 percent of what happens, so to speak. Perception is a mainly psychological, not physical process.”

[6] James C. Scott, Seeing Like a State; Nicholas Mirzoeff, The Right to Look: A Counter History of Visuality; John Berger, Ways of Seeing

[7]  Édouard Glissant, Poetics of Relation.

The Problem: Receiving

“Categories have no place here, but there are many patterns.”

– Mel Baggs, Distance Underthought

In their film, A Communications Primer, the Eames’ say that redundancy is one strategy to reduce miscommunications: 

“I love you

I love you

I love you

I love you”

They say:

It is possible to send a signal in advance of the code being known, maybe even by hundreds of years. 

They say:

“The ultimate transmission of such a message represents communication of a very complex order.”

Rather than assume that a signal is not communication, assume that you do not know the code.

Assume that its complexity eludes you.

Assume you do not have the right receiver.

Assume that even if you never find the right receiver or live long enough to understand the signal, it is not any less a signal, or any less communication.

Assume that if you don’t Understand, it does not mean there is a problem with the sender.

Assume that maybe, reducing miscommunication isn’t the point at all.

(If I repeat myself, don’t tell me. You’re not who I was speaking to anyway).

In the future, the receivers will confirm the complexity of our signals. This does not mean you and I will Understand one another better, it means that this will not matter because the impossibility of our Understanding will no longer be dangerous, but beautiful.

This post is part of a month long series supported by the Canada Council for the Arts exploring the topic of mis/understanding and translation of neurodivergent knowledge, asking: what embodied neurodivergent knowledge is not (or perhaps should not be) translatable? What kind of relationships might we build if we begin from the assumption that we will not be able to understand one another? What might happen to our patterns of communication, if understanding of the other is not our ultimate goal?

Some of the thinking of this blog series has been translated to the short film, Lost in the Reeds.

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The Problem: Noise

“Every work of art reveals itself to us as a person harmoniously feeling himself into a kindred object.”  

– Robert Vischer, On the Optical Sense of Form: A Contribution to Aesthetics.

“This is an experience, not a theory, and it is not intended to uphold any theories I have heard, even the ones that sound similar to it.”

– Mel Baggs, Cultural Commentary: Up in the Clouds and Down in the Valley: My Richness and Yours

The world is too loud.

The world is too loud.

The world is too loud.

The world is too loud.
And I can’t hold it.

Sometimes this noise is sound. Sometimes light. Sometimes smell. Sometimes touch. Sometimes something more intangible. The sun at midday in August is loud. The static of electricity running through my switched off speakers across the room. The texture of fish scales (seeing or touching) or microfibre cloths (touching). The Zoom call’s grid of expectant, staring eyes. Someone matching my rhythm on the sidewalk behind me. Being jostled on a crowded bus, or pulled along by an overly excited dog, or shuffled into the center of a packed elevator with all those faces at eye level. My racing, circling, restless thoughts. All of this and so much more is too loud, most of the time. I only realize the extent to which I have been confusing this noise with sound when one day in desperation, I buy ear plugs to carry with me to drown it all out, only to be surprised by how little they help. It is not my ears that are the problem.

It was in the study of relocalization – the transformation of perceptions from one sensory experience to another – that Swiss psychologist Hermann Rorschach first used his famous inkblot test. As an artist (and the son of an artist), Rorschach understood from personal experience that “sensations could be detached from their original location and felt somewhere else.” For example, when trying to remember a given image he had once drawn, his body could activate his vision: “If I try to call up in my mind a given image,” he wrote, “my visual memory is often unable to do it, but if I have ever drawn the object and I remember one single stroke of the pen from the drawing, even the tiniest line, the memory image I am looking for appears at once.”[1] In art and in life, this technique seems self evident to me (and also obviously to Rorschach) and I start to wonder if maybe this isn’t the case for everyone, and what that might mean.  

I wonder how often I have missed this slippage from one sense to another entirely, or taken it for granted as the way everyone experiences the world. Like early one Sunday morning, when I am jolted awake by the overwhelming smell of wood smoke, immediately convinced there is an approaching forest fire. But as the world creeps slowly back in, the scent dissipates entirely and I am just in my bed, on the ground floor of my inner city apartment with Saturday night party goers loudly returning home outside my window. Like how I can only call up my internal visual map of the route to a friend’s flat by remembering/feeling how my body braces over my bike tries with the discomfort of the cobblestone streets I have to take to get there.

Once I start to notice it, I begin to see the pattern everywhere. I start to recognize the rising tension every time I pick up my keys to walk out the door as that same embodied bracing for the discomfort of impending noise – a feeling so taken for granted that I had stopped experiencing it as a feeling at all. I realize with a kind of detached horror that I fundamentally do not feel my body because if I were to let go and fully register the volume of all of this noise I am blocking out, all of the time, I would be carried away by it. There would be no I left to differentiate from anything else. But is this really disorder, or a connection I have been trained to view as disorder?

In their short film A Communications Primer, which follows the Shannon-Weaver model of communication, Charles and Ray Eames define noise not necessarily as sound, but as “any outside force which acts on the transmitted signal to vary it from the original”. They make a seamless leap from Shannon’s theory based in the binary code of early computer science to how a conversation or a book conveys information, but I can’t follow them. What is this ‘original signal’ that can so clearly and confidently be separated out from the noise? The Eames’ film gives several examples of the ‘outside forces’ that create distortions, from the deteriorating quality of successive photocopies to inconsistent light and motion while reading on a train. They add that, “besides noise, there are other factors that can keep information from reaching its destination intact. The background and conditioning of the receiving apparatus may so differ from that of the transmitter that it may be impossible for the receiver to pick up the signal without distortion.”

But we are not computers. What if there is only an overlapping, complex web of sensory information that cannot possibly be separated, but is constantly slipping from one form to another? I guess then it might be hard to differentiate these signals from one another at all. I guess then the whole world would be noise. This sounds more like my experience, and also more like da Silva’s thinking. Does that make miscommunication a problem of the signal, or the noise, or the receiving apparatus – or maybe, the problem of a model that cannot account for such entanglement, except to see it as defect and inefficiency?

The concept of Relocalization that so interested Rorschach was an idea heavily influenced by the work of German philosopher and aesthetic theorist Robert Vischer, who coined the term Einfühlung (to feel-into) – a category he marked as distinct from verstehen (to understand) – to describe how we reflect and are reflected by the world. As Damion Searls explains, Vischer’s work greatly influenced both Western aesthetic theory and psychology, and when these texts began to be translated into English in the early 20th century, Einfühlung became empathy:

“What the word empathy described was not new, of course, and the ideas of “sympathy” and “sensibility” had long and closely related histories, but “empathy” recast the relationship between self and world in a new way. It also comes as a surprise that the term was invented not to talk about altruism or acts of kindness, but to explain how we can enjoy a sonata or a sunset. Empathy, for Vischer, was creative seeing, reshaping the world so as to find ourselves reflected in it:… “We can often observe in ourselves the curious fact that a visual stimulus is experienced not so much with our eyes as with a different sense in another part of our body. When I cross a hot street in the glaring sun and put on a pair of dark blue glasses, I have the momentary impression that my skin is being cooled off.”

An ‘atypical expression of empathy’ (defined through neurotypical eyes as a deficit of it) is frequently labelled an autistic trait. But I wonder if empathy/Einfühlung might be thought of as just another way of describing noise – a particular attunement to how everything insists on its constant connection to everything else. A connection that seems to be understood, from a neurotypical perspective, as no connection at all. As Mel Baggs says in their short film, In My Language:

 “Ironically, the way that I move when responding to everything around me is described as being in a world of my own, whereas if I interact with a much more limited set of responses and only react to a much more limited part of my surroundings, people say that I am opening up to interaction with the world. They judge my existence, awareness and personhood on which of a tiny and limited part of the world I appear to be reacting to.”

What Mel understands as deep connection to their world is perceived by neurotypical society as total disconnection.

This sensory sensitivity/connection certainly makes existing in the world inefficient, slower; anethma to a theory of communication (or any theory, really) that prioritizes clarity, efficiency and speed, and classifies anything that stands in the way of those goals primarily as defects or distortions[2]. But it is closer to an excess of Einfühlung, rather than a deficit of it.

Einfühlung/empathy is not Understanding, but if we stopped mistakenly conflating the two, we might begin to see our mutual misunderstandings as intimacy and entanglement, rather than estrangement. Maybe, we could begin to see connection, rather than disorder in all of this noise.  

 Sources:

Searls, Damion. The Inkblots: Hermann Rorschach, His Iconic Test, and The Power of Seeing. (New York: Crown Publishing, 2017).

[1] Searls 2017

[2] The concept of noise is also prevalent in economics, for example, where economist Fischer Scheffy Black understands it not only as interference with the accurate transmission of information but as “hype, inaccurate ideas and inaccurate data” – information’s opposite from which it is difficult to differentiate, and an indicator of market inefficiencies.

This post is part of a month long series supported by the Canada Council for the Arts exploring the topic of mis/understanding and translation of neurodivergent knowledge, asking: what embodied neurodivergent knowledge is not (or perhaps should not be) translatable? What kind of relationships might we build if we begin from the assumption that we will not be able to understand one another? What might happen to our patterns of communication, if understanding of the other is not our ultimate goal?

Some of the thinking of this blog series has been translated to the short film, Lost in the Reeds.

The Problem: Communication

"The fundamental problem of communication is that of reproducing at one point, either exactly or approximately, a message selected at another point."

― Claude Shannon, A Mathematical Theory of Communication

“Rather than lacking a theory of mind, it is argued here that due to differences in the way autistic people process info, they are not socialised into the same shared ethno as neurotypical people, and thus breaches in understanding happen all the time, leaving both in a state of confusion. The difference is that the neurotypical person can repair the breach, by the reassuring belief that ~99 out of 100 people still think and act like they do, and remind themselves that they are the normal ones.”

― Damian Milton, A Mismatch of Salience

“It is only when I type something in your language that you refer to me as having communication.”                    

 ― Mel Baggs, In My Language 

To meet the diagnostic criteria for ASD as outlined in the DSM-5, a person must display “persistent deficits in social communication and interaction” across three key areas: “social emotional reciprocity”, “nonverbal communication/body language” and “relationship maintenance”. A communication breakdown is understood to be a failure on the part of the autistic person to engage in the narrow and unidirectional set of expected behaviours and responses regarded by the neurotypical as normative, not the result of a mutual misunderstanding between multiple different but equally valid types of communication (or, to use Damian Milton’s words, A Mismatch of Salience between parties). This pathologizing of ASD as an individual inability to interpret beliefs, intentions and emotions in a way recognizable to neurotypical people has been called ‘the deficit theory of mind’, which locates ‘communication deficits’ as a problem with the autistic individual alone. As Mel Baggs (who was non-speaking) expands on in their short film In My Language, it is this deficit theory of mind which is the hegemonic perspective evident in the DSM-5’s diagnostic criteria; a perspective which does not consider that perhaps communication involves participatory, multidirectional translation and sense-making:

“I find it very interesting, by the way, that failure to learn your language is seen as a deficit, but failure to learn my language is seen as so natural that people like me are officially described as mysterious and puzzling, rather than anyone admitting that it is themselves who are confused, not autistic people or other cognitively disabled people who are inherently confusing. We are even viewed as non-communicative if we don’t speak the standard language, but other people are not considered non-communicative if they are so oblivious to our languages as to believe they don’t exist.”  

Searching for the neurotypical ideal of how communication is ‘supposed’ to work (or at least how the DSM-5 seems to conceptualize appropriate/normative communication), I fell down a rabbit hole into the history of communication theory, ending up in the world of early computing science. In 1948, mathematical physicist and Bell employee Claude E Shannon published A Mathematical Theory of Communication in the Bell System Technical Journal. A year later, Shannon’s theory was popularized in book form together with professor Warren Weaver, who re-interpreted it for a broader scientific audience under the more authoritatively named, The Mathematical Theory of Communication. Weaver’s manuscript, which expanded Shannon’s calculus to wider and more philosophical considerations, would become known as the founding work of contemporary information theory.

The Shannon-Weaver model, as outlined in The Mathematical Theory of Communication by the above diagram, proposes a process by which a message sent from an information source becomes a message received at its destination, with any possible corruption or distortion of that message accounted for by noise: “any outside force which acts on the signal to vary it from the original” (more on noise another day). In 1953, a few years after the publication of the book, it was this model that Charles and Ray Eames used as the basis for their popular short film A Communications Primer – one of several commissions they would go on to produce for tech giant IBM “aimed at naturalizing the computer within the context of civilization's intellectual history and American consumerism”.

What does it mean that our contemporary Western theories of communication have their beginnings in the wartime birth of computing? Shannon himself was a cryptographer, interested in increasing the efficiency of electrical signal transmission, and Weaver was a mathematician specializing in machine translation. Neither were psychologists or social scientists, but in this period of rapid technological change in the early days of computing, Weaver in particular saw the potential for a much wider application of these ideas. Older industrial metaphors of brain-as-machine were rapidly being replaced by brain-as-computer, and the Shannon-Weaver model was quickly picked up and widely applied across the social sciences, including psychology. Despite contestation, the limits of these metaphors have stubbornly persisted, slipping silently into both the public consciousness and much psychological discourse[1].

Today in the field of communication theory, Shannon and Weaver’s model has much competition and has been heavily critiqued, including by Shannon himself, who anticipated its misapplication[2]. Still, it remains highly influential in the popular imagination (as some have written, the ‘mother of all communication theories’), and is the unidirectional lens through which ‘communication deficits’ found in the DSM-5 seem to be conceptualized.   

What would it take to rethink communication beyond Shannon-Weaver and the DSM-5’s deficit theory of mind? As autistic social psychologist Damian Milton writes:

“an alternative account of autistic development is needed that is not rooted in notions of a social communication disorder, but of a different embodied way of being that can lead to effects on social interactions and understanding.“[3]

Milton’s Double Empathy Problem attempts to do this by reframing autism from a deficit theory of mind to a question of reciprocity and mutuality, proposing that the social and communication difficulties autistic people experience are not due to a lack of social skills or empathy, but due to differences in communication style between autistic people and neurotypicals, resulting in a reciprocal lack of understanding. Or maybe to put it in Krippendorff’s information-theory terms: “The readability of reproduced messages is a cultural issue, and goes beyond the theory. To understand each others’ messages, communicators must be literate in each others’ language communities.” Neurotypicals, as Milton and Baggs point out, are not necessarily literate in autistic culture and communication styles, and misinterpret their own confusion as autistic deficit.

As an alternative, Milton points to the work of philosopher and cognitive scientist Hanne de Jaegher and what she calls “participatory sense making”, a framework that “not only conceptualises autism at an interactional rather than individual level, but also places an emphasis on the understanding of how the active ‘online’ coordination that occurs between people is at the root of their mutual understanding and becoming.”[4]

Thinking in terms of double empathy or participatory sense making challenges the dominant pathologizing and individualizing discourses around autism which see social challenges as absolute deficits, rather than relationally constructed. As Milton rightly asserts, these concepts have the potential to “aid in reframing autism itself from a social communication disorder to a description of a broad range of developmental differences and embodied experiences and how they play out in specific social and cultural contexts. If this were so, it would lead to a radical change to current diagnostic criteria.” 

And what then? To go back to da Silva and Understanding, could our mutual misunderstanding/miscommunication be separated from both deficit thinking and Understanding entirely? Rather than try to pathologize or unravel them, could we instead view our differences in communication styles“not as the manifestation of an unresolvable estrangement, but the expression of an elementary entanglement”? What relationships might be built on those terms?

This post is part of a month long series supported by the Canada Council for the Arts exploring the topic of mis/understanding and translation of neurodivergent knowledge, asking: what embodied neurodivergent knowledge is not (or perhaps should not be) translatable? What kind of relationships might we build if we begin from the assumption that we will not be able to understand one another? What might happen to our patterns of communication, if understanding of the other is not our ultimate goal?

Some of the thinking of this blog series has been translated to the short film, Lost in the Reeds.

Sources:

Krippendorff, Klaus. "Mathematical Theory of Communication", In Encyclopedia of Communication Theory, S. W. Littlejohn & K. A. Foss (Eds). Los Angeles: Sage, 2009. pp. 614-618.

Milton, D., Gurbuz, E., & López, B. (2022). “The ‘double empathy problem’: Ten years on.” Autism, 26(8), 1901–1903.

Seising, Rudolph. “60 years "A Mathematical Theory of Communication" - Towards a "Fuzzy Information Theory”. IFSA-EUSFLAT 2009.

[1] In her recent book The Extended Mind, Annie Murphy Paul attempts to poetically update these metaphors to ‘the mind-as-magpie’, showing how thinking extends not linearly or mechanistically, but relationally even beyond the physical limits of the body.

[2] As Klaus Krippendorff argues, Shannon’s theory has been popularly misunderstood as a linear communication model based on the simplified diagram alone, not Shannon’s calculus, which is also applicable to circular communication structures. This misunderstanding, which Shannon himself anticipated in “refusing to call his calculus information theory”, has “encouraged many researchers to treat humans as channels of communication and measure their capacity of processing information”. Krippendorff argues that in reality, “Shannon’s model provides a versatile calculus, not a particular communication model…the theory does not presume that communicators share the same repertoire of messages, for example, having the same preconceptions or speaking the same language. By quantifying how choices made at one point affect those made at another, the theory asserts fundamental limits on all levels of human communication”.

[3] Milton et al. 2022

[4] Ibid.

The Problem: Understanding

I.  If it Doesn’t Make Sense, Don’t Sweat it

“My thoughts, such as I am aware of, are mostly observations of the world, that I have allowed to slowly and quietly settle themselves into patterns. They are not symbols of those observations. Symbols would have a better chance translating. They are also silent — no words pop in to describe them, there is no “loudness” about them, they don’t announce themselves with any kind of fanfare. I suspect to many people they would seem like an absence of thought…I have also observed words. I have seen which clusters of words attach most frequently to which situations. And that is how I use words — as imperfect translations of situations that present themselves in my mind. I use words because they are the most readily recognized way to communicate with most people…Most of what I know, I can’t say. What I do say is just an approximation of a sliver of what is in here…If it doesn’t make sense, don’t sweat it. It’s hard to get words to make sense on a topic as completely opposed to words as this one. It’s a little bit like seeing antimatter and trying to use matter in its vicinity.”

– Mel Baggs, The Fireworks are Interesting

I read this text from disabled writer and activist Mel Baggs after finding their short film In My Language, and it is like fireworks going off. Like throwing open a window in a suffocating room. Like being seen but not looked at.  

It isn’t like any of those things at all though, not really. These are all the metaphors I reach for as translations – like Mel says, they are just the clusters of words, the patterns that I throw at you in the hopes that some small measure of what I mean will come across.   

I have a new project: I am trying to be ok with being misunderstood. I am trying to be ok with the idea that I will always misunderstand others; and, if we are hoping to dismantle not only the master’s house, but also the tools that built it, this voracious desire for total Understanding is itself a part of the problem.

In saying all this, I am still trying to explain myself to you though, aren’t I? I am still hoping for your Understanding. I am still hoping for your Understanding because I guess I still believe that being Understood is the key to respect/safety/love/life in this world. The problem with unlearning this belief is that it is true, even though it shouldn’t be.

In this system/world[1] it is dangerous to be misunderstood because your humanity is based on your legibility to those with more structural power than you. If you will not or cannot enter into this logic, an (incorrect) Understanding will be provided for you.

Anything you cannot say can and will be used against you.

In this system it is also dangerous to be understood because whatever knowledge can be, will be co-opted and used against you. If you enter into this logic, the most intimate parts of your self-knowledge will be taken from you by coercion or force, and sold to the highest bidder.

Anything you say can and will be used against you.

II. And Yet, Here We Are Together

“Knowledge has this terrible power structure of “if I can take it from you then it’s valuable, but if I can’t then it doesn’t mean anything”…What makes us who we are, are the knowledges that we can’t translate to somebody…we assume we can translate everything and that I can know everything…it’s important that we might not understand each other. I really believe in misunderstanding or not understanding. I think it’s one of the most natural states of our being: and yet, here we are together. Here we are and living in that tension and it really is that tension where we exist as a third or a fourth entity.”

– Natalie Diaz

In the above quote from this interview, Mojave poet Natalie Diaz is referring to her experiences as a queer Indigenous woman, and the power structures she resides within which demand constant, extractive translation of these experiences in order to render her intelligible (and therefore valuable and marketable) to others. She contrasts the academy and the state’s violent and voracious appetite for “knowledge” of her with the intimacy of her relationship with her partner, where they exist together in another space of mutual misunderstanding.

I read all these books, collected all these papers and languages and diagnoses and incorrect translations because they told me that the key was Understanding myself and if I did that, and you did that, we might finally be able to communicate in a way that allows us to Understand one another. So now I have all these Frameworks and I try to use the Frameworks to Understand and I think because I have them, I should know what you’re trying to communicate to me, and that you should Understand what I’m trying to communicate to you. But it turns out, more often than not we don’t. We still don’t, and this broken promise of Understanding has only made us more strangers than we were before. Somehow it surprises and disappoints me every time. So what if we stopped? What if we just gave up Understanding as the goal? What if we started not from the hope or the expectation of ever fully knowing one another, but from the certainty of its impossibility? What if we built our relationship instead from something else entirely? What might those ‘something else’s’ be?

What if we believed our mutual misunderstanding to be the surest sign of our intimacy and entanglement?

III.      Unresolvable Estrangement

Denise Ferreira da Silva writes that Understanding is central to the West’s theory of knowledge and its ethical project because Euro-western philosophy is constructed on a foundation of four pillars[2] for which Understanding is key. What (and who) cannot be understood through the frameworks these pillars provide is deemed irrelevant to knowledge entirely, labelled dangerous, useless, primitive, disordered – “no-bodies”[3], surplus[4], ballast existence[5]. This is not just an unfortunate coincidence that we might now fix by extending Understanding to more categories of people than Kant might have originally intended. As Lisa Guenther summarizes, “[Kant’s] self-determining Subject requires as its logical and material condition a category of no-bodies who are separate from itself, determinable by inexorable laws, and developmentally or sequentially more primitive than itself”[6]. The problem then, is not that the translation or Understanding is impossible or incomplete, but that in transcendental philosophy (and the societies that act from its assumptions), legibility is what determines the standard for humanity, personhood, or worthiness of life at all.

But of course, all of this could be (is) otherwise.  

Ferreira da Silva argues that because they inevitably reproduce a separate, deterministic and developmentalist view of the world, these four philosophical pillars also render the truly entangled nature of our existence incomprehensible to us. As a possible way out of this thinking and towards a re-imagining of sociality, she proposes “the dissolution of the grip of the Understanding” in which “difference is not the manifestation of an unresolvable estrangement, but the expression of an elementary entanglement”. To illustrate how we might do this, she looks to two examples from quantum physics which suggest other kinds of relationship: quantum nonlocality and virtuality[7].

This all seems to have become even more abstract than usual, sorry. I don’t think we need to understand how Kant relates to quantum physics to know that the world the West has attempted to craft in their/our own image is brutal and unsustainable in every sense of the word, and that maybe to get out of this bind, we need to unlearn some of its fundamental premises. Let’s stick with this problem then: how to build a world where“difference is not the manifestation of an unresolvable estrangement, but the expression of an elementary entanglement”?

This post is part of a month long series supported by the Canada Council for the Arts exploring the topic of mis/understanding and translation of neurodivergent knowledge, asking: what embodied neurodivergent knowledge is not (or perhaps should not be) translatable? What kind of relationships might we build if we begin from the assumption that we will not be able to understand one another? What might happen to our patterns of communication, if understanding of the other is not our ultimate goal?

Some of the thinking of this blog series has been translated to the short film, Lost in the Reeds.

[1] whose name is White Supremacist Capitalist Heteropatriarchy, but that’s too much jargon and the terms change every few months anyway, so instead let’s just call it what everyone else does: Common Sense.   

[2] Derived from Kant and Hegel, da Silva names these pillars as Separability, Determinacy, Actualization and Sequentiality (summarized from Denise Ferriera da Silva, “On Difference Without Separability”, 2016).

[3] Ferreira da Silva, Denise. “No-bodies: Law, Raciality and Violence” (2014)

[4] See Beatrice Adler-Bolton and Artie Vierkant, “Chapter 1: Surplus” in Health Communism (2022).

[5] Before their death in 2020, Mel’s longtime blog was Ballastexistenz, which as they write, was “taken from the historical concept of “ballast existence”, or ‘ballast life’, that was applied to disabled people in order to make us seem like useless eaters, lives unworthy of life”.  

[6] Guenther, Lisa. “Abolish the World as we Know it: Notes for a Practice of Phenomenology Beyond Critique” in Puncta: Journal of Critical Phenomenology, 2022.

[7]  “The principle of nonlocality in quantum mechanics says that quantum particles can “know” the states of other quantum particles, even at great distances, and correlate their behaviors with each other instantaneously. It is instantaneous action-at-a-distance”. http://www.quantumphysicslady.org/glossary/quantum-nonlocality/

Week 6: Making Time Through Practices (On Repetition/Rehearsal)

“Rehearsals of disengagement from the frenetic pursuit of the new are necessary if one seeks to see beyond the slicing of time into past, present, and future and to relate to actions classified as outdated and impracticable as concrete, common options. Rehearsing disengagement is the practice of doing potential history. Rehearsals begin by replacing the imperial impulse to innovate with a shared right to participate in the common.” - Ariella Aïsha Azoulay, Potential History: Unlearning Imperialism

Abolitionist Ruth Wilson Gilmore has often referred to the abolitionist project as “life in rehearsal”. She says that two of her favourite types of students are artists and athletes because these groups “understand that practice makes different. They understand that repetition is differentiation,” an essential skill for building abolitionist worlds.

If we are to rehearse disengagement as strategy I would add another group to Gilmore’s: those who live in non-normative body-minds; the disabled, the neurodiverse, those who do not or cannot choose our relationship to disengagement, pattern seeking, non-linearity, other time scales.

I study people to learn patterns, gestures, scripts. I don’t remember a time when this wasn’t true. It is through conscious, studied effort and repetition that I have trial and errored my way into landing on some successful patterns of socializing. For many years, I got a lot of these scripts wrong (I still do, especially when I am exhausted or overwhelmed) but like the muscle memory I have developed through countless hours holding a pencil or paintbrush, it has become to some extent, second nature to deploy them. Whether or not we have a choice in learning and then utilizing these scripts, and the immense effort this costs us is another question, but either way I guess, my bodymind knows very well that practice makes different.

When I was first learning to paint, I remember clearly my intense frustration one day with my inability to mix a specific shade of blue I was trying to match to a photo. No matter what I added, the colour veered first too far into green and then too far into purple. I could understand the underlying patterns, but could not direct them to shape the outcome I wanted. After watching me grow increasingly frustrated for some time, my art teacher came over, took a brush, and in a few quick strokes expertly pulled the exact shade I was searching for from the mess of my palette. The speed of this gesture made me instantly angry – what was it I had missed that was so obvious to her? I knew the same colour theory as she did, but still could not translate it – whatever I added was either too much or not enough. “It’s just experience,” she told me, “that’s all it is. You will get there.” And with mixing paint, I have. But despite studying these patterns all my life, so much seems to remain outside of my grasp; my efforts either too much or not enough.      

I realize I started this project with the goal to be much more practical. Initially, I proposed to come up with a series of prompts, nonlinear meditations, or actions inspired by these reflections to answer the question: if we make time through practices, what are the entangled practices we need to counter a linear, capitalist productivism? The title of the series, Making Time Through Practices, comes from Maria Puig de la Bella Casa. So what are the practices? The truth is, when it comes down to it I think there is only really one: repetition.

When she writes that time is made through practices, Bella Casa is talking about what we might learn about care, maintenance and repair from our understanding of soil[1]. Bella Casa makes the obvious connections between our relationship to soil and to one another under capitalism: that “what soil is thought to be affects the ways in which we care for it, and vice versa”, and how “a logic of production over-determines other activities of value” and “transforms care from a co-constructed interdependent relation into mere control of the object of care”. She also makes this short note on repetition:

 “The repetitive character of ongoing observation of soil cycles enables care. Care work becomes better when it is done again, creating the specificity of a relation through intensified involvement and knowledge. It requires attention and fine-tuning to the temporal rhythms of an ‘other’ and to the specific relations that are being woven together.”

Repetition creates specificity, relation, an ecology of presence. This is not an innovation, but obvious to any of us who have ever tended a garden or seem to be wired to find patterns in everything around us. There are so many things I want to unlearn, but my “restrictive interests and repetitive behaviours” or “imbalanced pattern related perception” are not among them (even if that were possible). Instead, I go back to my original teachers, the plants, the soil, the rivers who have always known the complexity of relations built on repetition.

[1] Puig de la Bella Casa, Maria. “Making Time for Soil: Technoscientific Futurity and the Pace of Care.” Social Studies of Science: 45(5).

Dendritic pattens: frost, drainage pattern of the Tsangpo River in Tibet, fern fronds, manganese crystals found in limestone

Kaleidoscope: Broadleaf Plantain

Kaleidoscope: Yarrow

This post is the final entry of a two month series exploring neurodivergent experiences of (non)linear time, supported by the Canada Council for the Arts. Some of the thinking of this blog series has been translated to the risoprint zine, How to Build a Kaleidoscope.

Week 5: Making Time Through Practices (On Relation)

“I am on very bad terms with space. I am on very bad terms with time.”

– Aimé Césaire, Indecent Behavior  (h/t Katherine McKittrick on Twitter)

“The amount of time it takes for a substance to enter the ocean and then leave the ocean is called residence time. Human blood is salty, and sodium, Gardulski tells me, has a residence time of 260 million years. And what happens to the energy that is produced in the waters? It continues cycling like atoms in residence time. We, Black people, exist in the residence time of the wake, a time in which “everything is now. It is all now” (Morrison 1987, 198).”

 – Christina Sharpe, In the Wake: On Blackness and Being

“Time is…not a real process, not an actual succession that I am content to record. It arises from my relation to things.” – Maurice Merleau-Ponty, Phenomenology of Perception

“Not all speed is movement.” – Toni Cade Bambara

Maybe the biggest learning that has come from committing to write regular blog posts (which were in fact meant to be weekly blog posts) has not been my reflections on their content itself, but the demand to think consciously about the process that actually goes into my writing – and the revelation of just how out of linear time that process is. That what I feel as ‘just last week’, is a month ago and that intervening time is not a straight line from thinking to acting but instead, a series of spirals and trap doors and detours into other planes that definitely are related (I promise), but hard to string together in a way that is intelligible for others. And maybe most strikingly – because this project has given me the space to really sit down and read about it – learning about the relentless pathologizing of what I had previously never understood as upsetting or disordered, except when required to graft my experience of time onto those that are not my own.    

Since my last entry I started three new books: David Graeber and David Wengrow’s blockbuster The Dawn of Everything, Ali Madanipour’s Cities in Time: Temporary Urbanism and the Future of the City, and Jay Jordan and Isa Fremeaux’s We Are ‘Nature’ Defending Itself. I finished one: Sarah Sharma’s In The Meantime: Temporality and Cultural Politics. I wrote an article reflecting on the Berlin housing struggle, arguing for challenging the Eurocentric property and voting rights discourse in favour of a more relational praxis. I watched two talks from the Edinburgh Environmental Humanities Network’s series Phenomenal Time: Perceiving Ecological Temporalities. I walked with a friend in the small urban forest of Plänterwald, in an attempt to recalibrate our relationship to the urgency of multiple unfolding crises. I printed a series of Risograph postcards using the image of a favourite healing weed which will be sent to prisoners in Belarus. I did a lot of research on how to build kaleidoscopes. These actions might be more or less clearly related to this project of thinking and writing on nonlinear time and on building relations, but no less connected than all of the other work/life events which also happened that I can’t describe as fitting so neatly. Maybe especially when it comes to work.

In Sarah Sharma’s In the Meantime (the one book this month I did finish) she argues it is an individual’s relationship to labour which configures their experience of time. Sharma theorizes the concept of power-chronography as an extension of Doreen Massey’s power-geometry, arguing that far more than space, temporality “is an invisible and unremarked relation of power,” which continues to go unrecognized, even in the many critiques that deal with an assumed increasing culture of speed. The shared experience of workers under capitalism, she argues, is not actually an increasing speed of life, but rather the individualized and depoliticized expectation that one must continually recalibrate ‘their time’ productively. She theorizes power-chronography as an attempt to politicize time by moving away from individualistic accounts and towards understanding how power is expressed temporally through social relationships.

Sharma begins the text by defining (Western capitalist) society as a space based culture, citing the work of political economist and media historian Harold Adams Innis and his theory of space-time bias. Innis argues that space based cultures tend to be imperial powers which see time as a resource, commodity, or sequence of events which can be managed and controlled, and as a result are prone to becoming overly invested in the present[1]:

“Innis’s work allows us to see that by all such determinations, global capital depends on a spatial treatment of time, on a spatially biased culture. It is not just that our dominating technologies are spatially biased; our ways of knowing, systems of power, and even notions of resistance tend to be spatial.”[2]

To unpack how time operates as a form of social power, Sharma follows the temporal worlds of business travellers, taxi drivers, and corporate yoga teachers through a series of interviews. The intersections of race, gender and citizenship status are noted as playing a role in shaping the conditions of their labour, but a discussion of disability at these intersections is notably absent. In reading this text with an interest in neurodivergent experiences of time, it is clear that the individualized demand to continually manage time and recalibrate our bodies for productive labour have distinct contours when it comes to disability, but power-chronography is quite a useful tool for thinking about them.   

The focus and treatment of the present in Sharma’s work especially stood out. While the curated experience of “being in the moment” through yoga is lauded as both individually enriching for the office worker and economically beneficial for the company through increasing worker productivity, the neurodivergent experience of time as a continual present is pathologized as unproductive “time blindness”. When we are unable to recalibrate our experience of time towards economic production at will, suddenly “the power of now” is no longer seen as enriching, but disordered. Both the empowered and pathologized versions of now here share the same assumptions of a space based culture which treats time as an individual issue of control and management: take your medication or take ‘time out’ for you.

To escape from a lot of theory and go back to the beginning…reading Sharma crystallized for me that it isn’t “time blindness” as such which I experience as disordered, but the relational aspect of time – both as a mismatch between my own lived experience of time and that of my (space based) culture’s, and the demand (quite physically impossible, at least without medication) to regulate/recalibrate this experience at will for the demands of production in capitalist society.

If, as Sharma writes, in my culture, our ways of knowing the world down to our notions of resistance tend to be spatial, what might we learn about resistance from those whose lives are much more time based – whether that be through differences in culture, ability, or something else? What might temporal resistance even look like? Not merely ‘opting out of speed’ – a reflection that pretends to be a negation, which Sharma illustrates through her investigation of the slow food movement – but something else entirely. I don’t know, but I think immediately of some of the teachings I’ve learned from radical Black scholars and activists.

When Toni Morrison, Christina Sharpe or Denise Ferreira da Silva write it is all now, they are speaking explicitly in terms of a politicized relationship; a history that is not really history, but afterlives which exist simultaneously across space and time. When now is understood as continuous and relational, rather than as a fixed point in an individual time management strategy, it is all now might actually be a revolutionary and liberatory key. How do we live as if that were true?  

For someone who thinks and writes a lot about relation, I feel that I struggle with it so much in life. I continuously question whether my preference for being alone, the comfort I find in books and images and my reluctance to engage with others in person are neurodivergent traits, or just a repetition of the dominant individualized and alienated social order. Surely I can push myself harder to be different? What I want to build centers relationships, presence, connection – but I am quickly exhausted by most social interactions. Sensory issues and unpredictable social demands make big groups or long stretches of interaction difficult and unenjoyable. The pandemic made these realizations even more acute. The initial thrill of being able to attend many more functions and meetings suddenly taking place virtually gave way to feeling even more disconnected, as the major narrative around this shift became the irreplaceable value of in person gatherings and how frustrated everyone felt at the inadequacy of these digital replacements – something I really couldn’t relate to. I realized that I don’t even know what practicing sustainable, radical relation might look like outside of these (neurotypical) narratives.   

Recently I read Damian Milton’s Double Empathy Problem, which reframes autism from a ‘deficit theory of mind’ to a question of reciprocity and mutuality. The Double Empathy Problem proposes that the social and communication difficulties autistic people experience are not due to a deficit of social skills or empathy, but to a reciprocal lack of understanding and differences in communication style between autistic people and neurotypicals. Basically, it is an attempt to re-center relationality in the dominant pathologizing and individualizing discourses around autism. Maybe this is a place to start. In reading back through some of my older posts I realize I’ve returned to the same thought:

What if this feeling of perpetual now-ness, this inability to plan, this ‘time blindness’ is not a defect but a signifier of connection? What if it is all now? What if the spaces in between are in fact galaxies at different scales, binding us to other worlds? What if this dis/ordered sense is an order unto itself? An order of entanglement? 

Riso printed postcards to be sent to prisoners. The text on the back, translated into Russian reads: “For generations, yarrow has been used as one of the most versatile healing herbs. It prefers to grow in disturbed soils, bringing restoration and balance to the places it is most needed."

[1] Innis, Harold Adams. The Bias of Communication (Toronto: University of Toronto Press, 1951).

[2] Innis contrasts space-based cultures with time-based cultures, which tend to be oral cultures that treat time in terms of continuity, and space “as a sphere to be protected, rather than a means to extend power outward.” Lakota philosopher Vine DeLoria Jr. makes a parallel observation, arguing that in western (space based) cultures, meaning is derived from history and development as understood through linear time, while many Indigenous world views, which work from cyclical or concurrent understandings of time, derive meaning from place and relation to land. (DeLoria, Vine. God Is Red: A Native View of Religion. Golden: Fulcrum Publishing. 1992).

This post is part of a two month series exploring neurodivergent experiences of (non)linear time, supported by the Canada Council for the Arts. Some of the thinking of this blog series has been translated to the risoprint zine, How to Build a Kaleidoscope.

Week 4: Making Time Through Practices (On Hierarchy)

“Viewing ADHD as this neuro genetic or neuro biologic disorder of self regulation brings with it some very important insights that I would like you and the families I council to understand, not the least of which is this one: it’s always now. ADHD is, to summarize it in a single phrase, time blindness. People with ADHD cannot deal with time and that includes looking back to look ahead to get ready for what’s coming at you. So the individual with ADHD is kind of living in the now and wherever the now goes, they are being pulled along by the nose wherever it goes.” - Dr. Russell A. Barkley, PhD

Today (now) I am back on the meds and so my head is doing that laser attention thing that doesn’t actually mean I am more focused on any one task, but does seem to mean that I am more productive at performing the same multiple tasks simultaneously. Whatever productive means, I guess (look, I am writing a blog post. Look, I am finally answering important emails).

A while ago I shifted from beginning every email with sorry for my late response to thank you for your patience which feels somehow like a very small victory. I look back at the date of my last entry here and realize it was almost a month ago, even though I have thought about this task every day and been certain for one month that tomorrow (not now) I am going to write something.

“The ability to look ahead is called intention, so ADHD is actually IDD: Intention Deficit Disorder, because it doesn’t matter what your intentions are, you’re not going to do them…your intentions are not the problem, and it’s not insincerity, it’s the inability to organize around those intentions.”

Even though I have calendars of neatly lined rows and square boxes perpetually next to me on my desk, and an elaborate colour coding system for writing down tasks and events in those white boxes which is supposed to enable me to control (my?) time, the schedule that I actually work by is a rotating piece of scrap paper with only two headings: this week and next week. Somewhere in the process of writing this (now) I realize I don’t actually notice when one turns into the other maybe because in fact, this week and next week are both relative and so are also always now. I take tasks off the list as I complete them and am anxious only if they begin to pile up or approach someone else’s strict deadline, not when next week suddenly becomes next month.

(Thank you for your patience)

“Do you see what happens? It doesn’t matter what your plans were, what your goals were, the now is more compelling than the information you’re holding in mind and you will get pulled along by the now. You are time blind.”

Ok. But does this mean I am time blind, or does this mean that you’re assuming that time functions in the same rigid way for everyone?

(Thank you for your patience)  

“If we had to summarize, in a single sentence ‘what is the purpose of the frontal lobe to humans?’, it is to organize your behaviour across time in anticipation of what is coming at you: the future. So ADHD creates a blindness to time, or technically, to be more accurate, a nearsightedness to the future. ADHD is at its heart, a blindness to time, or technically to be more exact, a nearsightedness to the future. Just as people who are nearsighted can only read things close at hand, people with ADHD can only deal with things near in time. The further out the event lies, the less they are capable of dealing with it. This is why everything is left to the last minute because they only deal with last minutes: that’s all they perceive, that’s all they deal with, that’s all they organize to. So their life is a series of one crisis after another, all of which were avoidable because people prepared and they didn’t. They weren’t ready on time, in time, over time, with what they needed at that time. So ADHD is destroying the timing and timeliness of human behaviour.”

This seems right and familiar, sort of. Recently I added a new column to the bottom of my working to do list: long term. Under long term is a number of things like investigating switching to better health insurance, finding a specialist psychologist, updating my language certificates or joining the local tenants union; tasks that exist in a perpetual twilit limbo, haunting me but never quite existing in a NOW urgent enough to do them. Still, exorcising them onto paper does seem to help quiet some part of my head that continually fills up with all the things I should be dealing with, but never quite do (until they become immanent crises). But sorry doctor, I can’t agree. What is “the timing and timeliness of human behaviour”, as though both time and whatever human behaviour is are universal constants? Have you considered that they are not?

“This ability to organize across time comes with a capacity to build pyramids of behaviour, from little behaviours to the bigger behaviours above them, to the bigger goals above that. All human behaviour can be organized into a hierarchy…people with ADHD cannot hierarchically organize behaviour. So they are accustomed to dealing with behaviours in little fits and starts, but they can’t glue those together as well as others to create the bigger goal to the bigger goal, all the way up, and that’s why you see a short attention span. It’s not really a short attention span, it’s the inability to organize behaviour across time into a hierarchy.”

Wait. Oh, I see. All human behaviour can be organized into a hierarchy. Wait, hang on: can it? People with ADHD cannot hierarchically organize behaviour. Wait, slow down. It’s not really a short attention span, it’s the inability to organize behaviour across time into a hierarchy. Wait.

I forgot I was writing this half way through and it’s now 12:53 pm three days later. No. That’s not right. I didn’t forget. I saw all the other connected things I might do, like a kaleidoscope of bright unfolding patterns, and did many of them first (in whole or in part), all while thinking about this text; small shards of coloured glass forming and re-forming connections while doing laundry, walking the dog, talking with friends, working on graphics contracts, researching new references, cooking dinner. I am certain this method of writing (living?) might be categorized as unhierarchical, unproductive, inefficient (should we pause to think about the assumed connections between these words, or do we skip over them?), but I don’t find it upsetting or disordered until I try to fit it into those square white calendar boxes.

(Thank you for your patience)

”I want you to understand something: your brain can be split into two pieces. The back part is where you acquire knowledge, the front part is where you use it. The back part is knowledge, the front part is performance. ADHD, like a meat cleaver, just split your brain in half, so it doesn’t matter what you know, you won’t use it. You have, what we call in psychology, a performance disorder.”

Given the long history of titled men who are confident dissection is the fastest route to understanding (most especially into two neatly divided pieces), respectfully, I must tell you I remain unconvinced.

Although a performance disorder does sound like the kind of thing I can get behind.

(Thank you for your patience)

“Time is often presented as a single flow, one that is accelerating based on the development of new technologies. It is still often considered to be neutral, objective and external to human practices, instead of socially shaped and produced. One consequence of this approach, as we saw in relation to time management, is that problematic experiences of time are viewed as an individual concern, something that needs to be coped with on an individual basis.”

In contrast to the medical model of disability, which says people are disabled by their difference and focuses on what is ‘wrong’, the social model of disability argues that people are disabled not by their impairment or difference, but by barriers in society.

(All human behaviour can be organized into a hierarchy)

“Rather than seeing time as a flow between past, present and future (whether this be linear or nonlinear), it becomes possible to ask how time operates as a system for social collaboration…how it legitimates some and ‘manages’ others…or how it works to support systems of exclusion.”

(All human behaviour can be organized into a hierarchy)

“[In Bruno Latour’s paper ‘Trains of Thought: The Fifth Dimension of Time and its Fabrication’], he claims that the traditional dichotomy between objective and subjective time fundamentally misrecognises the way that our experiences of time are a “consequence of the ways in which bodies relate to one another”…he suggests that our experience of time is not about the mind’s perception (subjective) or the universe’s form (objective), but a “question of the obedience and disobedience of humans or nonhumans”…time is multiple, conflicting and inherently requires compromise and adjustment…We are encouraged to ask not only how one might engage with the material world differently, but also how one’s own experience might be bound up with the experiences of others.”

All human behaviour can be organized into a hierarchy.

Thank you for your patience.

____ 

Quotes taken from:

Dr. Russell A. Barkley, PhD, Important ADHD Insights, CADDAC Conference, May 30, 2009, Toronto, Canada https://www.youtube.com/watch?v=wmV8HQUuPEk

Pschetz, L., & Bastian, M., Temporal Design: Rethinking time in design, Design Studies (2017), https://www.sciencedirect.com/science/article/abs/pii/S0142694X17300765?via%3Dihub


This post is part of a two month series exploring neurodivergent experiences of (non)linear time, supported by the Canada Council for the Arts. Some of the thinking of this blog series has been translated to the risoprint zine, How to Build a Kaleidoscope.

Week 3: Making Time Through Practices (On Ruins)

“In ruin-time, some have proposed to call the period that precedes the ruin’s reclamation as a symbol the interval of neglect. Collapse happens in an instant, after years of slow rot due to negligence. There’s just not enough time, and we’ll get to it tomorrow. Maintenance is deferred, surfaces slowly chip away, sites are abandoned for decades, left to fall apart. Small issues — details, really — are ignored, but over time, build and become heavy. Yet, these intervals don’t have much to do with a static sense of time. Nuclear explosions are measured and documented to the millisecond, but unfold for hundreds of thousands of years. The underlying preconditions for collapse can be set for decades. Where do we mark the “beginning” of a collapse, and where and how do we mark the end?”

– Andrea Stevens, Works Fall: On Ryts Monet and Ruins

“My favourite definition of the body is that it’s a thing that needs support. A social body, a body of work or water, a body of laws, or organs, tissue, bones – none of these can stand, withstand, on their own.”

– Johanna Hedva, Notes on Need  

I realize I am behind on this project, and I have decided that the difficulty I have in maintaining any kind of regular working rhythm is actually part of the point. For at least two months, nothing is moving like it should, including time. All of this seems stilted. I’m trying to tell you something important but I can’t get the words out. Instead they stay circling endlessly inside my head: repeating repeating repeating.  

I haven’t been doing great. It feels too public to write that here so directly, even in this very small corner of the internet frequented by almost no one. There is that ever present pressure to be clever, deep, polished, on, honest-but-make-it-stylish, earnest-but-don’t-be-too-much. Whatever you do, do not allow all of these needs to spill out of your gasping mouth unscripted and onto the page - how embarrassing that would be.

Anyway, the point I’m trying to get to is, today I came across an article on the differences between abled and disabled mutual aid and finally felt like writing something here again. In the article, Leah Lakshmi Piepzna-Samarasinha takes on the sudden prevalence of ‘mutual aid’ groups and ‘collective care’, and their sudden discovery/takeover by abled folks in light of the pandemic.

Piepzna-Samarasinha writes: “Crip mutual aid doesn’t think the pandemic is going to be a short-term thing, that the worst is over and we’re on our way back to “normal.” I’ve seen so many mainstream mutual aids scale back or close up shop because of a sense that the pandemic is over, right? I haven’t seen any of the underground or overground, informal crip networks and projects stop. We were sick and disabled before the pandemic and we know all about how things don’t go according to plan, how timelines stretch out, how people stop calling after the 2 weeks which is the longest they can conceive of a body/mind emergency happening. We know about not ever being able to go back to “normal.” We know crip needs stretch out long like horizon, like forever.”

Time might be a clever abstract concept to be brought out to play around with, or speculated on in an avalanche of clever essays and artist statements, but the moment it does collapse into itself, the moment the forever actually becomes the now, the too-muchness of those not held in its linear grasp is immediately clear.

Where do we mark the “beginning” of a collapse, and where and how do we mark the end?”

The truth is, I have been deferring all the necessary maintenance for months, knowing it would catch up with me but hoping to squeeze out just one more week, just one more. Unlike uranium decay, this interval of neglect is maddeningly unpredictable and irregular. Sometimes I really can eke out just one more whatever, until I can’t, and just one more sends me over the edge. This is one of those second times. The endless now stretching into forever times. So right now, I read these words with gratitude, and hope to keep remembering that the low-key, quiet, private acts are the work, and that the need of support is not shameful, but also timeless.

This post is part of a two month series exploring neurodivergent experiences of (non)linear time, supported by the Canada Council for the Arts. Some of the thinking of this blog series has been translated to the risoprint zine, How to Build a Kaleidoscope.

Week 2: Making Time Through Practices (On Waiting)

Nonlinear Flow Sequence for Patients/Patience Interacting With the Medical Establishment

Find a comfortable position in your bed and become unable to leave it for several days.

Miss your psychiatrist’s appointment.

Lift up through the chest. Swing your feet over the side of the bed, soles flat on the floor.

Remember to call and reschedule the appointment in the three hours the phone lines are open daily on weekdays.
Fail. For some reason, always remember on weekends instead.
*Repeat for a month

Run out of meds.

Shit.

Inhale. Ok, now really try to remember. Exhale.

Stretch through the tips of your fingers. Make notes and everything.

Notice the notes every day exactly two hours after the phone lines have closed.

Fold the fingers of both hands into fists.
Make bigger, more insistent notes in red ink.

Leave them in conspicuous places.

Inhale. Ok that worked!

Exhale.

The line is busy.
The line is busy.

The line is busy.

The line is busy.
The line is busy.

If you don’t get through now you will forget again tomorrow.

The line is busy.
Inhale. Forget to exhale.

Give up. Slip back into Forget Again Tomorrow.

*Repeat until one day, you eventually get through.

Inhale. Your next appointment is five weeks from now. Exhale.

*Repeat entire sequence from the beginning.

There are two free diagnostic clinics in the city who will accept my health insurance.
The first replies: Our waiting list is too long, we are not adding anyone at this time. Please keep checking the website which will be updated when we’re open again for taking new patients.

The waiting list does not open again for taking new patients.
The second replies: Our current waitlist is three years. Please don’t write us again.

Ok, ok.

My psychiatrist, who I have seen four times and only writes prescriptions and sends me on my way again, recommends a private specialist (maybe I can swing one initial appointment?). The specialist has exactly one hour per week open for new patients to make an appointment by phone. I think this must be some kind of bizarre diagnostic assessment for a specialist whose patients supposedly suffer from executive dysfunction and ‘time blindness’, but ok.

Ok. I’m desperate.

I repeat the above sequence for a year. Nobody picks up the phone and my voicemails and emails go unanswered.

I write an advocate’s group in my hometown in Canada asking for advice.
They reply: It will cost between $2000-5000 for a Canadian diagnostic assessment and any eventual diagnosis will only be recognized in Canada and not in Germany.

“Patient comes from the Latin “patiens,” from “patior,” to suffer or bear. The patient, in this language, is truly passive—bearing whatever suffering is necessary and tolerating patiently the interventions of the outside expert.” 

I wonder what would happen if I directed much less energy and time into contorting into these uncomfortable poses (Wait: my chest is tight. Wait: my back is sore. Wait: my shoulders are at my ears. Wait: I forgot to breathe again), and more energy into…what? Something else. Just breathing, maybe. I take up kickboxing, which it turns out is also mostly about breathing and which I also mostly forget to go to. Anyway, it is still more helpful than the doctors I have managed to meet with so far.

Maybe what I am really looking for is not a more accurate label, but just someone’s permission to hit things.

This post is part of a two month series exploring neurodivergent experiences of (non)linear time, supported by the Canada Council for the Arts. Some of the thinking of this blog series has been translated to the risoprint zine, How to Build a Kaleidoscope.

Week 1: Making Time Through Practices (On Patterns)

Journal Entry

19/02/2021

Repetitive Behaviours

The world is too loud

The world is too loud

The world is too loud

The world is too loud

And I can’t hold it.

But is it me that is repeating, or everything?

The spiral fractal of fern time, the waves of starlings in murmuration that sound exactly like the sea, the tree rings that are fingerprints that are sand ripples that are floodplains that are hurricanes over the South Pacific, the galaxies of neurons misfiring, this insistent entanglement of everything.

And isn’t the whole world (and all the worlds beyond this one) built on repetition at different scales? And what if this resistance to change, this need for the small certainties of schedules and weight is not because the world is too unpredictable, but exactly the opposite? What if it’s because the world is so loud, so impossibly loud in its insistence at every moment on these infinitely complex patterns, that I can’t hold them? I can’t block them out.  What if everything is too loud because all I can see/hear/feel is this constant click clickclickclick of these patterns rubbing up against each other? Not all the time, not all the time, but enough, enough, ENOUGH that sometimes I can’t ignore how loud it is and I can’t think and I can’t speak and I vibrate vibrate, vibrate with trying to swallow it. Swallow it. Keep going. SWALLOW IT! Consume it. Consume. Consume. Consume it before it consumes you. But it all just sticks in my throat and I choke. And which smoke is it that I am left coughing up? Smoke from the forest fires, from the buildings crumbling, from the houses burning, from the orchards alight? I don’t know I don’t know. I DON’T KNOW. Isn’t it all the same smoke? Aren’t you choking too?

26/02/2021

The scientists write:

“Individuals tend to present with differences in auditory and tactile perception. Sensory problems are based on how the brain processes incoming sensory input from multiple modalities across each of the five senses (vision, hearing, tactile, smell, and taste) that is likely intimately connected with the brain’s sense of time, and ability to perceive the temporal structure of and between events.”

The scientists write:

“They are ‘lost in a sea of time’.”

Lost in a sea of time. Lost in a sea of time? Yes. Yes. Maybe. Maybe the sea. All my wordless metaphors growing up were water. Thunderstorm. Undertow. Tidal swell. Drowning. Floating. Breathing.

The poets write:

“It is not a garment I cast off this day, but a skin that I tear with my own hands.

Nor is it a thought I leave behind me, but a heart made sweet with hunger and with thirst. Yet I cannot tarry longer.

The sea that calls all things unto her calls me, and I must embark.

For, to stay, though the hours burn in the night, is to freeze and crystallize and be bound in a mold.” (Gibran, of course).

What if this feeling of perpetual now-ness, this inability to plan, this ‘time blindness’ is not a defect but a signifier of connection? What if it is all now? What if the spaces in between are in fact galaxies at different scales, binding us to other worlds? What if this dis/ordered sense is an order unto itself? An order of entanglement? 

The poets write:

 “Nothing will unfold for us unless we move toward what looks to us like nothing: faith is a cascade.” 

(Alice Fulton, Cascade Experiment)

The poets write:

“I have just realized that the stakes are myself.”

(Diane DiPrima, Revolutionary Letter #1)

                                                                                                                                    31/08/2021

I read once, that there are only two points of reference for people who live in brains like mine: now and not now.

The scientists write:

“Firsthand accounts often report a need to adhere to rituals or routines to compensate for a failure to predict events, and to their disorientation in time. They reveal a general lack of understanding about the passage of time, and appear stuck in the present.”

I think this must have been written by someone for whom time moves like a river – a collection of moments flowing together in one predictable direction, rather than like an ocean – with undertows and squalls and currents that reverse (even if that’s only every 55 million years or so, linearly speaking). I think this must have been written by someone who can decide whether or not to notice patterns.

The scientists write:

“Restrictive Interests and repetitive behaviours result from increased and imbalanced pattern-related perception and cognition, and social alterations result in part from the usual lack of clear pattern in social interactions, combined with the interference of restrictive interests and repetitive behaviours with social development.” 

Pattern seeking, the experts say, but I never noticed this. I mean, I notice patterns. I notice myself noticing patterns (I am not seeking them, I notice them because they are loud). But I guess I don’t recognize myself in this language of pathology because the more I think about it at all, it seems like time is actually the thing that we are stuck on.   

Rituals are not for ‘orienting myself in time’. Rituals are for drowning out the deafening noise of scattered patterns with familiar ones.  I am not disoriented in time because time does not have to be linear for it to be orienting. I am disoriented because inside my head it is never, ever quiet.  

More often than I would like, I get these notifications on my phone: “look back on your memories from this day 12 years ago”. I end up staring at the picture trying to mark the differences between my face from a decade ago and the one in the mirror and somehow I can’t square the distance between them at all. I know everyone says, “wow, that feels like it was just yesterday”, but it was yesterday, as in, it isn’t now; so it was yesterday, and a month ago, and 12 years, and also tomorrow, and the year after that – they are all equally close. This is to be unstuck in time, I guess. This is to be disoriented. Disordered.

Maybe what they’re trying to say is that not everyone lives their life swinging wildly between the expanding endless now of the artists’ flow or writer’s high (call it hyper fixation, if you want), and the collapsing endless now of overstimulation (call it autistic burnout, if you want). It is true that I can’t plan the future for shit, not because I am irresponsible (I am in fact, frustratingly, excruciatingly responsible), but because it doesn’t really exist for me - I can’t grasp it. I think about the people, the scientists who can just be in this moment and look ahead at a location called future and behind at a location called past, and plan their life accordingly in that comforting, regular flow. That must be relaxing, I guess. Like floating peacefully on a tube down a lazy river. That must be quiet.


This post is part of a two month series exploring neurodivergent experiences of (non)linear time, supported by the Canada Council for the Arts. Some of the thinking of this blog series has been translated to the risoprint zine, How to Build a Kaleidoscope.