fitness, in the modern economy, is the ability to engage in any given task, for as little or as long as one is conscripted, without asking what the project contributes to;
propelled onward by a belief that the designers of the project have our collective interests in mind;
that the project is always becoming more refined;
and that today’s toxic inefficiencies are excusable, being that they contribute to our salvation as a species.
understanding this, my unfitness makes much more sense to me, and i embrace it wholeheartedly.
Our friend Tammy Zo (Pollard) needs our support. She is homeless, and in grave danger of losing her belongings, many of which are cultural archives and work that she has created herself. The fact that she needs our support is a consequence of our culture’s failure to maintain mutual support networks independent of institutional channels, and failure to recognize the long arcs of creative people in our communities—especially women—and their support needs.
I have written about this before, and will continue to do so. In healthy societies, where everyone knows one another and recognizes everyone as valuable, care is a distributed function of the economy—not merely transactional. Child-rearing is a community responsibility, not isolated within a nuclear family. People who function as culture-bearers are supported by people who function as food processors, and tradespeople, and caregivers.
In our modern society, each person is expected to be their own provider, caregiver, support person, as well as generating some economic surplus to feed the institutional economy. This is not sustainable, especially for many culture-bearers, whose sensory and cognitive architecture is often arranged to process a specific field of knowledge in a very deep way. People that are wired to do specific work are often pushed into work environments that are hostile to their nervous systems, and the burden of adaptation is placed on the individual rather than the workplace.
Some creatives are able to find support through project management—grant writing, proposals, partnerships that enrich institutions while meeting the needs of the creative person. Some are able to work this particular landscape to meet their personal needs along with that of their work. Unfortunately, even in the best of times, these processes are not easy for someone to manage alone—again, I’m emphasizing this idea of distributed care. In our current economy, cultural institutions that thrived for decades are being shuttered due to lack of funding. Tammy’s situation is the downstream consequence of this cultural drought.
Certain people are the sensory apparatus of the community. What sounds like a personal cry for help is actually an alert to the larger processes that are happening around us. We have often been trained to dismiss people asking for help as irresponsible, as disorganized, as failing to manage resources.
But if we understand that funding for creative and cultural institutions is hemorrhaging right now, (I can provide receipts if you’re interested), we will understand that the suffering and dire straits of our creative friends in our communities is not a matter of personal failing, but of a lack of scaffolding—we haven’t built in the horizontal networks that support us when the vertical infrastructure evaporates.
And furthermore, the burden falls more cruelly on women creatives, who are expected to provide emotional labor for their communities, while still remaining legible in their creative pursuits—which often require long periods of gestation (artworks and cultural curation projects require no less expenditure of energy than children). Women who are struggling are often perceived with less sympathy and understanding than their male peers, as their need is read as a failure of a provider of emotional support to provide. This is an unspoken agreement that is devastating in reality. Many will not recognize it, but for many, it is just the way every day is organized.
At some point, it would be a good idea to set up community institutions to provide support to creatives in times of need. In the meantime, we need to recognize moments when individuals need our support, and do what we can. There are a number of ways to support our friend in her time of need.
Access to stable housing (so important for creatives who need stability to collect their materials and thoughts)
Personal storage space that is not time-limited and subject to seizure (this can be any secure, unused space—an attic, basement, outbuilding)
Access to regular safe quiet space, independent of housing
Access to restorative care, such as bodywork, massage, engaged conversation, body doubling, walking and movement partnership
Access to arts and cultural funding through grant-writing for specific projects
Access to nutrition
Access to unstructured social time enjoying one’s surroundings and the simple joy of being together
Thanks for listening, and please consider how you can be an agent of support for the culture and bearers of the community, who define our values and identities.
the etymology of the term ‘autism’ derives from an idea that a person with autistic traits is somehow isolated in a world of their own, that others can’t reach.
i would offer that this is exactly wrong, and a projection by an observer with a mindset built from a variety of assumptions that prevents them from understanding the way the observed person moves through the world.
the isolation being described is that of the observer, not the observed. an isolation from nature, and from processes that take place across long arcs, and within complex systems.
and this isolation prevents the observer not only from understanding the observed, but from understanding their own true nature, and the ways that certain qualities that appear awkward in a limited social context are vital for the human project as it plays out in relationship with nature, the earth, and the universe.
for this reason, i advocate for new language that acknowledges the contribution of the person who moves across a longer arc; whose body remembers what has always been important, even when people in the room have forgotten; whose mind forgets what is not important, even when the people in the room are catastrophizing about a missed deadline; whose presence requires the room to reassess what is important at every turn; whose character collects specific fields of information that, when recognized, enrich the community in unmonetizable ways.
so, i’m going to be speaking in awkward sentences, as i try to articulate the experience, from the inside, of a person who recognizes something of what is important; who recognizes and loves themselves and those around themselves; and who is unsatisfied with the direction that a large swath of humanity has taken—away from nature, and a harmonious relationship with the universe.
sometimes, in coming to our senses, it’s important to disengage from a compulsion to make sense. thank you for your attention to this matter.
Many traditional cultures around the world—what I would call emplaced cultures—have sustained populations for millennia, within different watersheds, meeting different needs with different answers. Care distributed through community and across generations, calibrated to the place the community inhabits.
Western medicine arrives with its own language—what is right and observable in every case across place and time, with the body as the background—dismissing what it can’t quantify and trace to prior research. Its real achievement is mechanism. It can name an endocrine disorder, or sequence the removal of a tumor. Many traditional wisdom traditions had their own explanations for these conditions—accounts Western science now treats as unsatisfactory and obsolete.
But Western medicine is not famous for tracking complex systems. What environmental conditions produce disease and mental illness at population scale? What cultural practices sustain quality of life across a community? Western science is moving in those directions, but movement is slow.
Many traditional cultures solved these problems long ago, in the social organization itself—health is in how we live together, not in how many reps we do of an exercise. They simply didn’t pursue the technology needed to solve the tumor and the endocrine disorder—social order took precedence over bodily order. Different priorities, different unsolved problems.
The trade, plainly: traditional culture does 95% of the work of keeping a community healthy. Western medicine covers the remaining 5%—acute care—and offers almost nothing for the rest, beyond aphorisms about getting enough exercise and eating healthy. Western medicine is a scalpel. What’s happening is the scalpel is being used to excise whole communities to solve one liver disease.
What we’re seeing now is that traditional communities across the Global South are sending their people into Western medical training—for community service, but also for advancement, and for escape from poverty. In the process, traditional practices are being abandoned, either willfully or by neglect, in pursuit of this specialized 5% of care needs—missing that the other 95% was vital infrastructure, only invisible because it was unmonetized.
The question isn’t whether to let Western methods in. It’s how to let them in without letting them replace what they can’t see—infrastructure that was already doing work in spheres well beyond health. What strategies might result in sustainable culture with a net gain, rather than a trade?
The community might send someone already recognized as a healer to study advanced medical interventions for acute needs. Or a second person in the traditional care economy might be sent to work alongside the healer, rather than instead of them.
The boundary between emplaced and portable doesn’t need to be a wall. It only needs each side to keep its debts—emplaced culture answerable to land and ancestors, portable culture answerable to what it can actually prove.
The innovations Western culture offers can be enticing and addictive—like social media. A firm grounding in systems that have served communities across time keeps those innovations from pulling humanity off course.
I’m a bi-gender person—masc and femme together in parallel unison. Like a Tootsie Roll, a Twinkie, a Ho-Ho, or a KitKat, I have a more brittle, masc outer layer; and a creamy, femme inner core.
The femme part of me has been surprised when I have proposed activities to femme friends that I think of as normal and platonic, like getting together to braid one another’s hair or do nails or other grooming activities, along with gossip and food and music. The response I’ve gotten doesn’t tell me that the idea is being rejected because it came from someone with a masc presentation, but just that the idea itself feels icky or weird or frivolous, regardless of who proposed it.
I think we’ve reached a time of cultural compression when the the need to mask in public makes casual intimacy too costly—if we forget for a couple of hours that we’re supposed to be competing with one another, and stepping on one another’s shoulders and fingers and toes, we’ll miss an opportunity for social advancement. Moments of casual intimacy remind us of the brutality of the work environments we operate within, and since it seems that brutality is unavoidable, it is the intimacy that becomes the thing to avoid.
And since I experience this casual intimacy as a kind of vitamin—an important part of a balanced social diet—I recognize that we have created a condition where everyone is starved of something that would always be available if we would collectively let down our guard and stop performing invulnerability. We hunger for it, but someone’s rules say that we are only allowed to experience it within a contractually sanctioned relationship, so when we get feelings outside of those pigeonholes, there is a conflict—between the natural tendency toward connection, and the imposed imperative to suppress the connection.
This being so, I own that I will always be perceived as too much—”too familiar,” “flirty,” “inappropriately intimate,” “overly emotional,” “dramatic,” “too informal,”—simply because I refuse to accept the inevitability of the brutality that many people face in their work and social environments. I refuse to suppress the natural tendency toward connection. I refuse to impose a contractual constraint on where I experience intimacy. I feel it is actually my whole job to remind my community that productivity is not the goal, that free time is a virtue to be cultivated, and that casual intimacy is our actual settled and natural state.
That being so, I might describe the grief I feel about the loss of a loved one in the middle of a work meeting. I might express that an interaction with an especially loud and reckless motorcycle made me feel vulnerable when applying for a business license. I might point to the behavior of a person in a management position, and show how that person is taking an opportunity to punch down, rather than being accepting, inclusive, and supportive. “Too much” means “not silent,” and in spaces where we are expected to disappear, “not silence” equals “too much.”
And to be clear, what I am calling intimacy has nothing to do with sexuality or even physical touch. Intimacy is simply the willingness to return to our basic, true character in the presence of another, and to drop the mask that work and social navigation require of us. Intimacy is simply abandoning the performance of invulnerability for a moment or two. Intimacy is simply acknowledging the fiction of independence, and experiencing the wonder and joy of interdependence, even if only for a couple of moments.
At the present moment, I propose that the most radical and revolutionary act we can engage in (but the most powerful, since we can engage in it any time) is simply the act of casual intimacy—when we acknowledge that each of us has a way that we care for ourself, and that we could just as easily care for one another in the same moment.
As we brush our hair, realize that we could be engaging in casual intimacy by brushing someone else’s hair. As we manage our pet’s excrement on a walk, realize that we could be engaging in casual intimacy by helping a loved one who needs support to manage their excrement. As we feel a moment of grief for the loss of a loved one, recognize that we could just as easily feel a moment of grief alongside a friend who is experiencing a similar moment.
I propose that the more we engage in casual intimacy, the less we demand that our contractual relationships fulfill our needs for intimacy, and that that quality in itself is liberating to both sides of our relationships.
So, on that note: let’s get together soon to braid each other’s hair, or do our nails together, and have some snacks and music and gossip time, and maybe cry about our dog that just died, or about the parent that doesn’t remember us that we are caring for.
In this economy, this is the type of care that cannot be monetized, and that is only available to the privileged. Let’s privilege one another with casual intimacy, and invite whomever we can into that state of privilege—because if everyone is included in it, it is no longer a privilege, but a right—simply a natural state of being, around which we organize ourselves, around everyone’s comfort, and not just our own.
all of the reasons to hate ai and to love ai are valid, to a point. it does things for us that are helpful to have done for us. it does things to us that are harmful to have done to us.
the main thing we should focus on is what it requires of us. it requires that power be centralized in such a way that concerns about water and land use are deprioritized. it requires that people who don’t have our best interests in mind influence elections. it requires that we relinquish our rights to our own ideas in the tos agreement required to use it.
ai is not local: it requires centralized control of a vast network of resources from around the globe. it doesn’t fit in a backpack.
ai is not democratic: the algorithms that deliver it’s results are designed by a small team that does not answer to us. it doesn’t respond to community review.
ai is not neutral: it’s knowledge base is a collection of writings that represents centuries of colonizers writing about encounters with beings deemed lesser. it doesn’t weight indigenous voices higher.
ai is not embodied: nothing in its database includes information that can only be experienced through the senses. it didn’t smell what you smelled.
ai has not experienced loss: it can tell you what grieving people have said, but it cannot experience their pain, and console you in the ways that only someone who has experienced loss can console you. it can’t adjust the way you’ve adjusted.
ai has never attended a birth, nor tasted the final breath of a loved one. it doesn’t know the poem your mother needed to hear for comfort.
ai is a performance by someone who was never there, but who requires you to hand over all rights to land, water, minerals, species diversity, diplomatic nonpartisanship, labor justice, bioregional congruity, indigenous stewardship, ecosystem integrity, economic equity, cultural heritage, family legacy, intellectual architecture, emotional elaboration, and environmental renewal.
How Making Sense of My Child’s Cannabis Use Helped Me Understand The Beauty of Human Adaptation
Does Domestication of the Human Species Really Represent Our Shared Future on the Planet?
My almost-adult child is a gifted and challenged person, navigating the transition to adulthood in post-industrial American society. They’re a systems thinker, who aces every test, and who also can’t sit still or conform to the demands of a quiet workplace or a grid-based schedule. They often miss appointments due to oversleeping, and sometimes sleep for periods that don’t align with respectable industrial grid time.
They are highly engaged in any task at hand, but have difficulty playing the long game of connecting with a regular schedule. They pick up new skills very quickly, but express little interest in developing any of those skills into something that, in a modern context, looks like a career.
The environments they express the most affection for are highly cooperative: soccer is a big one; skateboarding in community, where peers are moving together, both in synchronous and asynchronous formations; making public art in strategically complex spaces, that require collaboration to envision, coordination to plan, and cooperation to execute. They are the epitome of the team player, as long as the team has a clear plan that serves the collective need for transparent and direct expression of experience in a creative and innovative way.
Making Sense of the Early Adult Drive for Autonomy and Relevance
My child’s challenges have moved them toward strategies to mitigate those challenges, and cannabis has been a recurring strategy that serves some need.
As an engaged parent, who is trying to nurture their adult child’s independence, while managing my alarm when witnessing behaviors that appear problematic, or as leading toward future failure to integrate into the workplace, I’ve been trying to make sense of what I’m seeing: a young person who is fiercely dedicated to their friends; who takes pride in a complex task well-executed; who resists being pigeonholed into existing categories of social, ideological, economic, or aesthetic legibility; and who sincerely wants to play a meaningful role in their community, despite repeated experiences of mismatch with established academic and occupational cultures.
Considering all of this, I’ve been unsatisfied with the ‘just say no’ or ‘avoid this substance because of the potential dangers involved’ frameworks of personal discipline, relative to what I see as cannabis use as substance-scaffolding.
I ask instead, “How is this scaffold serving their needs,” and “what is this person seeking to satisfy, according to the tendencies of their nervous system?”
Asking these questions, and exploring the range of possible resolutions, has caused me to rethink everything I know about individual competence, self-medication, and utility-within-community.
Here’s the story that unfolds in my brain, starting with trying to understand my child’s use of cannabis.
Understanding Cannabis as a Regulation Support
Question: A subset of neurodivergent people find cannabis to be highly regulating. Using current diagnostic frameworks, would we be able to reverse engineer this mechanism and suggest alternative supports for regulation?
Answer (from multiple channels): Diagnostic frameworks don’t code this directly—no DSM category for “cannabinoid-responsive regulation phenotype”—but the mechanistic literature gives us enough to reverse-engineer some plausible pathways, and each one maps to a non-cannabis lever.
The candidate mechanisms, each with its alt-support:
Excitation/inhibition imbalance (the leading cortical model in autism/ADHD research)—the nervous system runs with too much glutamatergic drive relative to GABAergic brake. CB1 agonism works presynaptically to turn down excess signal. Alt-support: deep pressure/proprioceptive input, rhythmic bilateral movement, anything that mechanically dampens throughput rather than trying to out-think it.
Low endocannabinoid tone—some autism research finds blunted anandamide signaling tied to social ease and anxiety regulation. If the system’s baseline ECS is running lean, exogenous cannabinoids are topping up a deficit rather than adding a foreign effect. Alt-support: sustained aerobic movement (the “runner’s high” is partly endocannabinoid-mediated), omega-3s as ECS precursors, consistent touch/massage.
Thalamic sensory gating failure—the filter that should mute irrelevant input doesn’t, so everything arrives undifferentiated and loud. Cannabinoids affect thalamic gating directly. Alt-support: environmental engineering, without pharmacological substitution: reduce raw input volume rather than trying to improve the filter (single-channel environments, structured monotropic focus, noise reduction).
Vagal/parasympathetic underactivation—anxiety compounding the sensory load, cannabis’s anxiolytic effect partly vagally mediated. Alt-support: direct vagal stimulation—humming, slow exhale-longer-than-inhale breathing, cold water on the face.
Dopaminergic under-stimulation(more ADHD-coded)—restlessness eased by mild dopaminergic modulation. Alt-support: novelty-structured tasks, high-engagement movement, body doubling.
Considering this data, relative to the questions that framed my inquiry, here’s how I connect the dots when I choose to view my child as perfectly-abled, rather than disabled, and here’s how I attempt to contextualize this for my community.
Greetings, esteemed community:
I compiled this explanation of how cannabis helps regulate the neurodivergent nervous system. This all maps very cleanly onto our child’s character, and shows why they miss soccer so much (missing as ‘longing for,’ and not ‘fails to show up for.’ I think you get my meaning, but it’s good be precise where language suggests multiple meanings).
This all points to running (‘rhythmic bilateral movement,’ ‘sustained aerobic movement’), with intense interest-based focus (‘structured monotropic focus,’ ‘high-engagement movement’) and cooperative participation (‘high-engagement movement,’ ‘body doubling’) as being the the regulation supports they are reaching for, or the activities that they are predisposed to seek in making their character meaningful in a human community engaged in dialogue with a natural environment.
Basically, our child shows the collection of ecological adaptations that would enable ice-age hunter-gatherers to hunt and bring down a wooly mammoth, as a source of food and raw materials for clothing, shelter, and tools. Mammoths were herd animals, much larger than humans, with thick skins and wooly coats that were very difficult to pierce with the projectiles of the time—wood or bone projectiles that were either sharpened or had separate affixed bone or stone tips specialized for cutting/piercing.
Bringing down a mammoth would require a high degree of coordination and sustained movement by a group of humans—to first isolate an animal from the herd; bombard it with a number of projectiles, none of which would be able to kill the animal on its own, but only weaken it when applied in numbers; and then chase the animal until it was weak enough to be able to approach directly, to apply severing cuts with stone knives at strategic points, to bring on death. Then, the animal had to be processed fairly quickly, before bacteria, insects, and scavengers moved in to take their share.
The Mental Health Day
This coordinated activity would involve great risk-taking, and sublimation of fear-response. In other words, badass individuals engaged in a life-or-death struggle to meet the needs of their community.
Engaging in this way would have resulted in a huge output of energy in a specific time period, that would likely extend beyond one cycle of dawn-to-dusk; which could not be segmented into work hours that resemble modern industrial time cycles of work and rest; by an individual who could literally measure their life by their proximity to such a resource as a mammoth herd. The individuals involved in this project would have needed extended periods of rest to recover from the endeavor, perhaps spanning multiple day-night cycles; and the community would have been happy to oblige, considering the benefit of their energy expenditure to the community.
Where Do We Go From Here?
in the context of domesticated society, none of our child’s particular traits make sense. but our period of domestication has been a tiny blip in the overall arc of the human project. human evolution, and adaptation to changing environments, is a very long and slow process, relative to our understanding of adapting to environmental changes within our lifetimes.
Considering those changes, i hope we can find ways to recognize our child’s unique gifts as adaptations that are valuable to the community; to recognize the range of skills required to make the human project work; and to rediscover how a person with these natural predispositions is a valuable contributor to their community — because of, and not in spite of, their characteristic rhythms and sensibilities.
Thanks for coming to my TED talk, and thank you for your cooperation in this project of nurturing a unique person to be their best self in the rapidly-shifting priorities of life in modern industrial society.
In part one, I explored my mother’s life and work, relative to the social conditions she experienced as a low-income, self-directed woman navigating the public health and housing systems, and asked whether, viewing her life through the arc of 76 years of continuous productivity in the fiber arts, different decisions could have been made resulting in better accommodations and better integration into her community. I asked whether it was worthwhile to reassess our standards of fitness, disability, and disorder.
What are the conditions of disorder in an individual, and at what moment does disorder become a permanent designation, rather than a temporary condition?
Let’s use a slightly less emotionally fraught frame than a human life. Let’s observe some monkey behavior, not because of the monkey’s proximity to humans, as a primate, or because they have been fascinating to science for that reason, but because the monkey is my mother’s Chinese astrological sign, and she would like that association.
We are studying capuchin monkey behavior, for the purpose of developing a standard of fitness. We enter the habitat where they have evolved and adapted over countless millennia—let’s say a forested area in Honduras. We observe a troop and look for a specimen that appears healthy and generally representative of the species. We settle on an individual that does not appear to be a dominant male or a highly fertile female, but a female of no special rank relative to the troop, who is socially mobile, non-aggressive, non-avoidant. Our selection appears to represent a fairly neutral specimen from which we can extrapolate our findings onto the rest of the species. She appears fit, at the median presentation for the species—not the most successful, not the most disadvantaged. Just an average capuchin monkey. This is our focal individual, our point of departure for understanding monkeys.
We have chosen as our focal individual, our case study, an individual who exists within a social order that has many categories, and who exhibits a variety of behaviors and characteristics, monkeys being a highly social species. She is healthy—fit, we might say—within her environment and her social order. Looked at with more context, we can see that we are selecting an individual who has some characteristics that can be said to be representative of the species—bilateral symmetry, similar arrangements of limbs, tail, organs, fur. But this individual will differ from other individuals according to their social role—sex characteristics, size and weight relative to a dominant male or fertile female, specific social behaviors relative to their place in the troop, and so on. Because we haven’t studied the whole troop over generations, we don’t really know how this individual ranks, in percentile terms, for any given characteristic. But for our purposes, we call her good enough to represent the species for our study.
We capture the individual and bring her into our laboratory.
Stop. Reflect. Project. Pause.
This is the most important moment of the whole examination. Everything that follows is exposition.
In bringing an example of a fit individual into the laboratory, we are now examining a disordered individual. Disorder is a function of environment, not identity.
The condition of her disorder is the environment of the laboratory—an environment to which she is not adapted. The fit individual is fit within a set of conditions—in this case, forest canopy; a containing species with a social order that sorts its members into roles; a milieu of related species; and environmental resources and conditions. In changing the monkey’s environmental and social conditions, we introduce her into a natural and social environment that diverges from the one for which she is adapted.
In changing this individual’s relational status from emplaced to portable—meaning that her original environment was unique, and that uniqueness is due to a relationship with land—the environmental conditions are emplaced—while our laboratory conditions have been carefully designed to be invisible and replicable—and therefore portable—we change the way any data we collect can be interpreted.
We can no longer make predictions about her behavior relative to her embedded environment. We are now examining monkey disability. Monkey environmental disorder. Monkey social disorder. Monkey with special needs.
Disability is defined by an environment, not an individual. Saying otherwise makes the conditions that shaped that environment invisible, and therefore assumed as immutable. Shout it loud. Steal the idea and run with it.
From now forward, every. single. metric. is measuring a disordered individual, relative to the social and environmental conditions she has evolved over millennia to be fit within. From now forward, the only standard of fitness is her ability to thrive in a hostile environment.
In defining her characteristics as representative of her species, using the snapshot of any data we collect the moment we arrive in the laboratory, there are a lot of things that we don’t know:
we don’t know if she was ascendant or descendant relative to the median for an individual of her social class;
we don’t know what she would have become, given another five years in the troop she was taken from;
we don’t know what knowledge she carried that only existed in her—which relationships, which routes through the canopy, which individuals trusted her and why;
we don’t know what role she was growing into, and little about the role she occupied on the day we captured her;
we don’t know who she would have mentored, or been mentored by, had we not removed her from her environment;
we don’t know what her position cost her to hold, or what it would have paid her, over a longer arc;
we don’t know what conditions produced her “neutrality” – whether it was constitutional, or whether it was what her troop’s social order permitted her to be;
we don’t know what she would look like measured against a troop with more resources, less predation pressure, a different history;
we don’t know what our presence, before capture, had already changed;
we don’t know what her stress response tells us about her species, and what it only tells us about this laboratory or this individual;
we don’t know what parts of her behavior we are about to record can be considered a baseline, and which are trauma responses to a hostile environment.
We don’t know that our definition of fitness is sound, relative to her environment, since fitness was never a property she carried alone—it was always a relationship between her, her community, and a forest we have just removed her from.
Sit with that.
rigor: mortis
Science demands rigor. Yet ‘rigor,’ as a term of art, defines stiffness, rigidity, resistance to change. And it’s this scientific rigor that my thesis is presented to indict. We have, as scientists, observers of phenomena, been entraining to limited premises, to confined metrics that don’t scale, to questions defined by a culture that has changed faster than our environment has changed us. The method is sound: question, test, record, reflect, question, repeat. But in our pursuit of specificity of quantifiable data, we’ve lost the frame. We rarely ask the systems level questions, because they often involve cooperation to answer, and cooperation is hard.
Einstein’s theory of relativity established this formally: there is no privileged, view-from-nowhere position from which to measure anything. Every observation is frame-dependent—inseparable from the position, motion, and condition of the observer making it. There is no neutral laboratory. There is no absolute vantage from which the monkey can be measured without the measurement itself already being shaped by the frame we’ve placed her in.
We need to start observing ourselves, and the conditions we assume before observing our subject.
a study of a study
Let’s move forward. Considering that our study is now the study of a disordered individual, let’s make the best of it, and reflect on our data.
We recognize that we want this to be a longitudinal study. We are rigorous—we want to play the long game. So we bring in another individual—a male—to make a breeding pair. We can now study our subject over generations.
We observe as many aspects of biology and behavior as we can think of, in our laboratory:
growth rate, weight gain, caloric intake relative to species norms established elsewhere;
reproductive cycle, gestation length, litter size, interval between pregnancies;
maternal behavior—grooming frequency, nursing duration, proximity-seeking in offspring;
social hierarchy between our two adults, now that a hierarchy of two is all that’s available to form;
vocalization patterns, and how they change in an enclosure with no canopy to carry them;
activity level across a 24-hour cycle, measured against a light schedule we control;
stress hormone levels, sampled at intervals convenient to our staffing;
response to novel objects, introduced on our schedule, to test cognition and adaptability;
aggression and appeasement behaviors, now performed for an audience of one instead of a troop;
longevity, and cause of death, when it comes, recorded as data rather than as loss;
And, across generations, we record whether any of these measurements drift.
And recognize that all of these findings represent behaviors and adaptations within a hostile environment that our subjects were not adapted to inhabit. We are recording disorder as baseline data for the species being observed.
Sit with that. Metabolize the conflicts presented here. Chew on the difficult truths.
Pause. Reflect. If you understand, grieve.
Then let’s move on.
We publish our findings. We present our data as representative of the normal range for the species. We get funding and extend our study to 20 generations of monkeys. This appears to be a longitudinal study.
But it’s a longitudinal study of disordered individuals, now sorted according to their fitness within a hostile environment they were not adapted to. Our study has shifted from “observing monkey fitness” to “monkey fitness relative to a specific, hostile environment.” Or better yet, “how do monkeys sort when we force them through this tube?”
Our 20-generation study is now sorting for survivability of hostile conditions, rather than fitness within the environment for which they are adapted.
Make note of that, and flag this for further study.
Hey, but we’ve got a lot of data. Our boss is impressed.
20 generations on, we’ve got a lot to work with in understanding monkey fitness and behavior. We’re able to establish norms, and medians, and divergences, and anomalies. We have a serious body of work, that’s the result of deep investments of time, attention, and capital.
This is the moment of truth, regarding the economy of scale, and its effect on the future success of our control group: the lab-raised monkeys relative to the land-embedded monkeys.
We come to this moment, recognizing that we have two populations to consider. We can name the conditions of their isolation. We can also consider the conditions of their reintegration. Let’s explore this.
Given that the monkeys evolved within a unique environment that they were then separated from;
and given that a subset of those monkeys were allowed to thrive within a different environment;
what is the degree of shift, relative to the original environment?
What did the laboratory monkeys miss out on, in their adaptation to the laboratory environment, and how might those variables provide challenges for reintegrating into their ancestral environment?
Our new control group of lab-embedded monkeys missed out on a lot of sensory and cognitive experiences that inform their new fitness criteria:
the full sensory and spatial complexity of forest canopy—three-dimensional movement, depth judgment across branches, distance calibrated to a body moving through open space rather than a cage;
exposure to the full range of native food sources, and the searching, testing, and problem-solving that foraging for them requires;
a troop large enough to generate the full range of social roles—elders, rivals, allies, mentors, mentees—rather than the truncated hierarchy of a mated pair;
exposure to predation risk, and the vigilance, alarm-calling, and group-coordination behaviors that risk selects for;
seasonal variation—rainfall, food scarcity and abundance, temperature shifts—and the adaptive behaviors those cycles require;
inter-species contact—the milieu of other animals sharing the forest, and the behaviors calibrated to that wider ecology;
the chance to leave a troop, or be displaced from one, and everything that migration and renegotiation of status would have taught;
unstructured time with no observer present—behavior that isn’t shaped, even unconsciously, by being watched;
the possibility of failure with real consequence—a wrong choice that costs a life, rather than one recorded as data and intervened upon;
continuity of relationship with individuals who remembered them across years, not just across a study’s observation window.
Along with this, our new control group is sorting along new criteria for fitness, that didn’t apply to our original population:
tolerance for confinement—stillness, restricted range of movement, proximity to walls and boundaries with no option to leave;
tolerance for chronic proximity to a small, fixed set of individuals with no ability to disperse, avoid, or seek distance;
tolerance for human observation—habituation to being watched, handled, and measured as a condition of daily life;
tolerance for a fixed, human-controlled feeding schedule, rather than self-directed foraging;
tolerance for a fixed light/dark cycle imposed by researchers, rather than natural seasonal variation;
reduced vigilance behavior, in the absence of any predation pressure to maintain it;
reduced range of alarm and coordination calls, in an environment with nothing left to coordinate against;
compliance with novel-object and cognitive-testing protocols introduced on a schedule convenient to staff, not to the control group;
recovery speed from repeated, unavoidable stress exposure—since the same procedures recur across a generation’s whole life, and across every generation after it;
whatever traits made an individual “easy to study”—docility, low reactivity, predictability—now quietly functioning as fitness criteria in their own right, selected for without ever being named as such.
Let’s pause again. That’s a lot to take in.
Two populations of monkeys. They’re all the same species, but observed in contrast, they are functionally different in important ways.
Having observed a group of monkeys in the laboratory with deep granularity, we have learned a lot about monkey behavior, variation, and fitness.
Having said that, let’s consider a different project. Let’s say we want to abandon our study, and allow our laboratory subjects to reintegrate into their ancestral environment. Will this be a clean and easy transition? Considering the metrics for fitness our data supports, and considering that we are choosing candidates for reintroduction based on our laboratory model of fitness, let’s see what the net gain/loss looks like.
Compared to our lab-based control group, here’s who would be sorted out of the original community:
Individuals that exhibit:
heightened vigilance and frequent alarm-calling would read as hypervigilance or excessive anxiety, since the new baseline has no predation pressure to calibrate against;
complex three-dimensional spatial navigation and constant movement across variable terrain would read as hyperactivity or an inability to remain still;
a wide vocal repertoire, calibrated to coordinate a large troop across dense canopy, would read as excessive or disordered vocalization relative to a population that only ever had to communicate across a cage;
strong reactivity to novel stimuli, appropriate to an environment where the unfamiliar is often dangerous, would read as poor stress regulation or low stimulus tolerance;
selective, discriminating avoidance of certain individuals or situations would read as social dysfunction, since the lab baseline was shaped by populations with no ability to avoid anyone;
assertive competition for troop rank and resources would read as aggression, absent the larger social structure that gives competition its context and its limits;
deep, long-term bonds formed and re-formed across a large, shifting troop would read as inconsistent or unstable attachment, next to a baseline of fixed, forced proximity to the same few individuals for life;
foraging behavior—wide-ranging, exploratory, tolerant of extended uncertainty about where the next meal is—would read as restlessness or food-seeking dysregulation, next to a population fed on a fixed schedule;
resistance to human handling and observation would read as poor compliance or temperament problems, rather than as an intact, appropriate wariness of an unfamiliar species;
variability itself—the sheer range of individual difference the original troop could sustain—would read as noise, or as a lack of the consistency the new baseline has come to expect, simply because the new population was never permitted to generate that range in the first place.
Every trait that would now be called divergent is a trait that was, in the original environment, either neutral or actively adaptive. Nothing in this list describes a defect. It describes a population still calibrated to an environment they have been separated from, and that moment of separation has ceased to be factored in to any assessment metric. This is the legacy of our original group of scientists failing to pass on their knowledge to a new generation. This is not an indictment, just an acknowledgment that there is cultural information that was simply forgotten.
None of this should be controversial, from my perspective. Nothing I’m presenting is new. It’s just considering a broader and more reasonable set of variables for organizing data. Why this doesn’t reflect current diagnostic paradigms is difficult to not interpret as nefarious intent, but I know better than to assume that.
monkey see, monkey do
From here, i’d like to actually step into the frame, or rather ask that together, we merge with it. We are the monkeys, the monkeys we were observing are now us. and we are observing the traits we have described as divergent, with the understanding that we are a colony of highly social primates, observing behavior, scanning for range, and sorting for adaptation to a highly restricted environment. How did we get here? What assumptions do we bring with us to our observations? Are our calculations neutral, or are they calibrated to ensure that the environment, the conditions of the laboratory, are maintained?
And by environment, i don’t just mean the physical environment, i mean the web of social relationships that exist inside of cultural expectations. We are a population that has been living in a constrained environment for generations, and our scientists have forgotten to relate their current data back to this population’s original emplaced environment.
i got this letter from my nana today. i thought id share it with you. it made me cry, she’s such a sweetheart. i miss her so much, but i thought you might get something out of hearing how she talks to me.
take care,
rag
hey, baby,
i hope you’re settling in nicely. i was just thinking about you, and wanted to give you some nice words in case you’re lonely. it can get lonely, these days. here’s some things that will help you remember that you’re not alone.
the meditation hall, the container that meditation happens within, is a character. we know this to be true because each meditation hall smells a little different, has different drafts, and the shadows land differently at different times of day.
just as each individual, each buddha within its walls is a character, and the sangha expresses the shape of the community’s character, the meditation hall is a character whose walls contain the character of the teaching that has happened there. even if no dharma talk has ever been given in the space, in this space, dharma is always being expounded. the particular shape of the dharma being expounded in the meditation hall continuously is called character. we say it is neutral, but in fact it has a shape that is exactly its own.
zen’s emphasis on shikan taza, and the absence of guided imagery during the meditation period, allows each mind to settle in its own way. each buddha is the container for the teachings, myriad ways of seeing and being seen, arising interdependently, and liberation is not dependent on following instructions, save the ones one follows to remain upright, if one needs them, be they remembered words, embodied shapes, or pictures of buddhas practicing upright.
within the meditation hall, the sangha arranges itself into the shape suggested by its walls, which were built exactly as a container for the sangha from the suggestions of the sangha. a buddha settles into sangha in the ways that the sangha suggests, and the shape of this settling is a suggestion that informs the sangha. countless momentary interactions, with people, with architecture, with idea and interpretation—nothing but dharma unfolding, and this unfolding is a character.
i know, sometimes people say you’re being a character, but you’re just being yourself. i see you, baby. miss you, sweetheart.
the moment a new monk, or the visitor from another temple, enters the meditation hall, the character of the hall is revealed: where are its boundaries rigid? where are there walls that adjust to the needs of the moment?
notice how quickly the seasoned monk moves to correct. notice the subtle signs in their behavior that they are adjusting to something, to understand it. beyond the postures and the mudras of the service, and the way the bells are sounded and clappers clapped, what other shapes is the sangha embodying that are shaped by the character of the meditation hall?
the new monk, or the visitor from another temple, might do well to view each interaction in a new space as a kind of guided meditation that reveals the character of the meditation hall—the character is being performed, and can be perceived—a perfect character study. someone is being meditated upon, and decisions are being made, just as one is meditating upon the space one moves through and making decisions.
seeing these encounters as guided meditations, that sitting in stillness prepared us to move through, how is one’s response to being guided, in the way one’s being guided? what is the character of the response to or the receipt of the dharma talk that one’s movement through the environment offers the sangha? where is the friction, or the resolution of friction, at the edges of the interaction between your character and the character of the meditation hall, and the sangha, and the buddhas within?
where does one notice resistance or redirection? where does one feel a curtain yield or a window open. breathing the shared air, understanding how air cycles through a space, understand how generosity flows through the space, and how it is redirected, and why.
when a monk asks questions, their questions reveal their character. when the sangha responds, the response reveals the character of the sangha. the character of the meditation hall is revealed in the particular way a footstep echoes, or the way the line of a tan invites us over, and these are reflected in the character of the sangha, and the buddhas within. a cast of characters with a certain character.
notice your capacity for kindness, child, and notice the way that kindness breaks you open when it reaches deep inside you. be reachable, honey. be generous, baby. knowing the way that kindness breaks you, consider the way that being forced open breaks you, and sit with that. i know you do.
have you ever had moments where you’ve been forced open, or moments where kindness broke you open? have you ever accidentally broken someone open with kindness? have you ever forced someone open with kind intentions? i know you’re thinking about these things, baby. that reflects kindly on your character.
don’t worry about performing the fiction of independence. try to abandon the performance of invulnerability.
the earth needs us to be vulnerable, right now, sweetie.
can you hear it?
i wish i could hug you.
nana loves you.
you be good now, and you just live your life, and be the best person you can. it’s your life, and no one can live it for you.
don’t forget to think of your old nana once in a while.
I’m not sure we should even be studying autism in the United States.
My mother just turned 82 today. She has faced challenges in every measurable area of her life, that I won’t go into—that’s a different story. Her diagnosis has changed with the trends of the healthcare industry, and she has only recently been recognized as autistic. It’s hard to imagine that someone who has experienced the challenges that have been placed on her would have such a sweet and sunny disposition and enthusiastic and optimistic outlook during times when her accommodations meet her needs. During times when her challenges are centered, she can be deeply dysregulated and difficult to comfort.
I’m going to take this in a surprising direction, at least considering the thrust of my advocacy, which is that love is the missing accommodation that’s never measured in any diagnostic framework. I never want to look at a person in a way that frames them according to their worth as a producer of economic output. Yet a remarkable characteristic of my mom is that throughout every stage of her life, from the time she was 6 years old until now—76 years and counting—she has been continuously engaged in making.
Her discipline is the fiber arts, and within that her skills and output are varied and broad—sewing, knitting, crochet, natural dyes are the main ones, and she’s dabbled in all other areas of the work. She has worked for brief periods in her industry, but there are so few compensated roles in the US that she has mostly done work in highly unaccommodating environments and lived on public assistance.
She’ll spend her last $20 on a skein of yarn to make a garment for a friend she met yesterday. No amount of reminding or cajoling can convince her to practice practical economy.
Making is literally self-regulation for her. When she is focused on a project, all of the other challenges stop being centered. As long as her needs are provided for, making work is her happy place. She also loves to share information, and she delights in the opportunity to pass on her skills and knowledge. I wish more of those opportunities existed, because they provide the context for the type of social interaction that both feeds her heart and nurtures her community.
76 years and counting of continuous making. What metric in the paradigm of industrial capitalist culture and disability accommodation factors in that part of her profile? None that I’ve ever come across. And this with a history of social isolation that can be viewed as a life-limiting condition on its own.
The condition of her disability makes sense in the context of the socioeconomic realities that her culture presents to her as the standard environment against which fitness is measured—where the type of handwork she produces is only valuable in a privileged family who can afford to accommodate the person making it, or in a country designated, within the global economy, as a labor-extraction zone—where high-skill, low-output handwork like hers becomes an input in production channels serving that economic system. Using that lens, it’s difficult to recognize her as a person of great economic value to any community. Her challenges add up to a net liability, when public housing, mental health care, and economic assistance are factored in.
When we recognize this person, nearing the end of their life expectancy, which is an important stage to factor into any metric of fitness—where will this person be expected to be in their later years? Will they still be enjoying life and engaged with their community? Any metric of fitness should take in the full arc of a person’s life, and not just ability to function at the level required to be measured as functional relative to potential economic output at the age of eligibility for the workforce.
When we recognize this person independently of their cultural frame, we can notice some things that are both remarkable and unremarkable, depending on how they are viewed.
Relative to an 82-year-old person who is engaged in a 76-year-and-counting period of productivity, who is warm, congenial, and who shares information and mentors freely when she is in her element (that seems like a good standard of fitness), let’s reframe the history of accommodations she’s received.
My mom’s primary relationship has been with the healthcare system and the public assistance apparatus that negotiates access on her behalf. Looked at honestly, her mental health accommodations have been based around her ability to interact in working environments that don’t meet her needs, and in intimate relationships with people who are similarly undervalued in our society, who also have communication differences, social challenges, unaddressed trauma, and self-regulation strategies that involve substances and power-balancing behaviors that are responses to perceived loss of autonomy.
In retrospect, all of that could be accommodated quite simply in another cultural context: recognize her as valuable; provide her with food and housing, for which her needs are quite modest relative to the median; interact with her socially in ways that suit her needs—let her interact with people in all stages of life, engage her on topics in which she has deep and exceptional knowledge, allow her to mentor people who share her interests, and accompany her in gentle restorative exercise like a walk through the neighborhood; and make sure she has a project and the resources to complete it.
The culture that frames the conditions of industrial capitalism as the standard environment within which fitness is judged is in fact a statistical anomaly, a tiny blip in the arc of human evolution relative to a variety of environments—5 centuries of organization and 2 centuries of implementation—in a journey of hundreds of millennia. Changing that frame, how could her life, and her value to a community, look different?
As this is not a dissertation, but meant to inspire dissertations based on different paradigms and cultural assumptions, I’m going to share information without proof. I’ll leave it to the inspired and informed reader to explore the connections I’m pointing to. Let’s continue having these conversations.
Consider that a cross-cultural examination of precolonial land-embedded societies around the world reveals a consistent pattern—deities and portions of cultural mythology that represent the role of the maker—the smith, the weaver—as the one who provides the necessary bridge from the natural world to a world of order that human habitation demands. The mythology directly legitimizes a person like my mother as the person who makes human existence possible—the skills they possess to transform raw materials into the tools, roads, clothing, and artifacts of material culture are seen as literally connecting humans to their environment in the exact ways necessary to support a community sustainably. Not as decoration—as vital infrastructure.
A culture with these embedded myths would have recognized my mother early, and, knowing her value to the community, would have nurtured her unique qualities.
Keep in mind: my mother acquired her skills at her own expense, in pursuit of her personal interests. The type of obsessive attention to detail that is required to turn raw fiber into garment, implement, or tool does not come easily to many people. To take the average person and force them into a program of training would be an energy-demanding exercise that would place possibly debilitating demands on most people. The demands of industrial capitalist economies force people through training programs like this as a matter of course. She pursued her program with joy, determination and pride, not to meet the demands of a credential, but to satisfy her precise curiosity, to regulate her life, and make it meaningful.
How would my mother’s brain, her nervous system, her psycho-emotional development, her ability to connect socially, have grown differently, had she been recognized within a community that valued her unique qualities? I’ll leave it to the reader to do the emotional and cognitive work of making those connections.
For me, understanding is inseparable from grief. If you understand, let’s pause, and reflect, and grieve. But also celebrate, and repair.
Back to my opening statement: I’m not sure we should even be studying autism in the United States, at least without radically reframing our metrics for how autistic people are judged relative to the societies they are embedded within.
Many will dismiss my argument as lacking data, as naive projection onto indigenous cultures of inclusiveness that wasn’t present, as mythologizing an idealized past I wasn’t present for. My hope is that the smiths and weavers of paradigms will sew together the threads of our precolonial collective past and show where specific human cultures crossed the boundaries of acceptable behavior by making portable mythologies that didn’t keep the connection legible of the natural world to humanity’s space within it. I hope they might show how specific cultures subjugated the role of the highly interested woman that weaves the community together to that of the warrior bent on destroying anything that doesn’t resemble it.
I realize that I’ve forced the ending here. I’m rushing an idea that deserves more space, for the comfort of the reader. How is this functionally different from rushing my mother into a diagnosis and cultural ghetto for the comfort of a diagnostic committee that is suffering cognitive overwhelm, too tired to assess the arc of a person’s life? And, if we’re kind, this is not an indictment. It’s the gentle reminder to the researcher with low interoception that it’s time to go to bed. Because you are an important asset to the community and we recognize your value.
I have such mixed feelings here. I feel terrible, having reduced my mother’s life to a case study. But having rendered her as valuable, and worthy of the recognition of a community that values her specific qualities, I rest, hoping that in making her legible, a community might find a better way to organize itself.
