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.
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.
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.
Framing gender, sexual, and relational preferences as choices does real harm. These choices are the result of a culture built around a specific origin story, that by now is clearly a failed metaphor. When the beauty of human variation has been forced through binary tunnels for centuries, who we are has to make a choice as to whether or not to question imposed binaries and let oneself become observably nonconforming, without role models or a shared language.
It’s the conformist power structure that forces the human being to prune themselves or be pruned, or risk the consequences of noncompliance. The choice is whether or not to allow oneself to be who they know themselves to be—and no one should be forced to make that choice. Calling the decision to do so a choice is a cruel trivialization of a life-or-death ultimatum.
You have to understand that growth requires belonging, and belonging requires recognition. A child who is loved is recognized, every day. A child who is recognized accurately, every day, by their community, grows to understand themselves in community. Belonging to the whole community, a child learns what their strengths and frailties are; and the community learns how to reciprocate with that specific child.
On the other hand, a child who is viewed with mistrust because some characteristic does not conform to imposed role options is neglected. Even if they get their material needs met, a child that is not recognized misses out on growing up belonging. If the whole community fails to recognize them, without knowing it they have imposed a completely different growth arc, shaping that child indelibly. A community that knows no differently ascribes this different arc to the common deviation metric of the day—which never includes the complicity of the community, or the imperfection in the lens being used to observe it.
The community that recognizes the value of human variation to the well-being of the collective will be delighted with a child’s specific qualities, and growing up with a community that is delighted by your presence has consequences, for the better.
The community that has a narrow tolerance for human variation that deviates from a small set of imposed categories that don’t map well onto the human organism will have difficulty experiencing delight in their children’s growth. They may go so far as outsourcing child rearing en masse, raising children in environments with few real role models, and without the belonging that comes from recognition.
Delight is like a vitamin, depriving a child of real-time reciprocal delight has real consequences, not for the better.
In the wake of centuries of binary training that twists our nature into prescribed shapes, given a window of opportunity, what looks like a decision to choose a nonbinary gender, a sexual preference that’s not prescribed in the dominant origin story, or a relational orientation that deviates from the cultural median, is more like an acknowledgement than a choice.
Acknowledgement is a moment of recognition. It is the delight that we reflect back to our child through our eyes, that allows one’s inner light to grow alongside one’s outer presentation. It’s an acknowledgment that should never have been framed as a choice. That moment of acknowledgment should always be celebrated, and never trivialized as a choice from a menu made on a whim.
Saying that autistic people who question the current paradigm of neurodivergence are seeking proof of a superpower does real harm. Diagnostic criteria are a snapshot. To refer to the snapshot as reality, without considering the hand that crafted the lens it was taken with, and for whose benefit, or what it distorts, cannot be seen as anything other than harmful to an understanding of complex systems.
Downstream of that, to then force people to identify with a disability designation that hints at accommodation, while the already meager care infrastructure is being actively dismantled by a government that wants to put autistic people on a list and ‘cure’ us, while at the same time removing funding from research that doesn’t agree with their agenda… to watch this all unfold is beyond heartbreaking. It’s criminal and cruel, and to enter neurodiversity justice spaces and hear the rhetoric from people who are claiming to advocate for the best interests of autistic people is just another example of the gaslighting being replicated by the gaslit.
It’s also understandable. We work from the models we’ve been given to work with. We recognize that there are privileged people and marginalized people. It seems to make sense to keep the structure intact and simply reset the algorithm to bring marginalized people in. But the system depends on there being marginalized people, and changing the algorithm simply shifts the suffering onto a different group of people. If we want equity to work, for real and for everyone, we need to learn how to work together differently.
Western science is good at some things, but it is also a paradigm that is easily gamed. What question we choose as a thesis determines the field of inquiry, the variables we can see (and the ones we can’t from our viewpoint), and the output is a snapshot. If we limit our questions to support a funding requirement, a political climate, a class preserving mechanism, or a corporate agenda, the snapshot is distorted, and this has real consequences.
I live in Berkeley California. Do you know how many people I have crossed paths with who are engaged in a research project that is losing funding due to the political climate? Let’s just say that we are not living in a time when good information is on the ascendancy, even at the academic level. I know people whose whole departments are fundraising to keep the lights on, and funders are not neutral.
In hostile times, it’s time to circle the wagons and protect the children within. The wagons here are perhaps a poor metaphor, being a symbol of colonial expansion. But what works is the idea of a circle protecting the future health of our community. The civic infrastructure that was supposed to protect us is being dismantled and defunded, along with the research institutions that were ostensibly designed to help us describe ourselves in ways that align with our nature.
But there is so much we can do if we train ourselves to abandon those decaying structures and find support through cooperation. Tōjisha Kenkyū is a self-study paradigm developed by people in the mental health community in Japan, who recognized that the stories being told to them by clinicians did not match their experiences nor provide support in the ways they needed. Through deep inquiry and information sharing, people working in this modality are learning bottom-up strategies and new language that allows them to access mutual support and offer more effective advocacy.
Every healthy community has access to its own story, that changes and unfolds within its very ecosystem. The questions that arise might not fit a funding landscape, but mutual support makes things possible that top-down institutions won’t.
The understanding of neurodiversity is in its infancy relative to Western scientific paradigms. As far as I can tell, the word neuronormativity only emerged within this century. Paradigms this new are bound to experience shifts that change the landscape of our understanding. When I hear people in the neurodiversity community loudly advocating for top-down paradigms that view neuronormativity as a standard of human growth and ability, and neurodivergence as a collection of abberant deviations from the norm, I can’t help but wonder who they are representing, and why they feel so confident in articulating the boundaries of an emerging paradigm.
Nature has amazing ways of achieving balance in a changing ecosystem. The whole reason we look like we do, and not like our ancestors Australopithecus, is that we diverged. Does that make us disabled versions of our ancestors? No. Evolution is a series of mistakes, that sometimes end up being helpful to the community, even as they are divergent from what came before.
Sometimes, what’s helpful to the community is someone tall enough to reach a food source inaccessible to most, and perhaps communities who had a few statistical outliers in height were more successful. In the context of industrial productivity, maybe the tall ones are just a liability, but is that the driver of change we want to follow? Look what doing so has done to biodiversity on the planet.
Sometimes what’s helpful might be someone with sensitive hearing, who can hear the approach of a predator or track game hidden in the canopy. Again, in an office, they are just seen as annoying, asking for accommodation again. Sometimes what’s helpful might be someone who thinks differently. When I think of the process of getting nutrition out of cassava, I wonder who on earth would have the patience and determination to figure that out. I’m sure it wasn’t one person, and parts of the process probably unfolded over centuries. But it’s not hard to imagine that at some point in the process, someone with cognitive differences might have thought to try something new. That’s not evidence of a superpower. It’s a person working the way they work, in the context of a team that values them. That’s the person we all know who we find frustrating, because their thinking seems so contrary.
In a society that’s not conforming to an origin story that pathologizes differences and that recognizes that through drought and famine and herd depletion and times of bounty, differences in the community are an asset, not a liability. They might develop ways of doing things that build respect for these differences. If we look at the practices of various cultures we can actually see that this is true.
Are autism advocates who advocate for the model of neurodivergence as a deviation from neuronormativity simply trying to practice realpolitik in social terms, accepting that industrial agriculture, production, and the administrative mechanisms that support them are the way it will always be, and we should engineer ourselves to align with that reality? If so, count me out. That’s the project I thought we were trying to abandon at all costs. If not, where does your confidence come from, and why does it feel so much like a story we’ve heard before, that got us into this mess?
this is one kind of harm caused by the abled/disabled binary when it is applied as a permanent designation to people: it erases from view the environment that enables or disables a person, and it makes invisible all of the ways that the environment is designed to enable the abled person.
it functions to other into a social class an experience that everyone is living, but some don’t recognize—the experience of needing to exist in relationship.
if we recognize that no one can live outside of relationship, and that we play both roles continuously—the carer and the cared for—then we start to recognize the moment of need without needing to label someone needy.
In designating certain people as disabled, without the embedded values of care and reciprocity at the cultural level, then the abled person gets to sidestep the role of caregiver, and there is not enough care to go around, leaving the disabled to have to negotiate for care that in a different culture would be considered a human right. I’m not just talking about healthcare. I’m talking about basic human dignity.
binaries are useful conceptual shorthand that should never be applied to people without their consent. if you can understand the value of going beyond the binary based on biological gender, and the real harm that strict adherence to that binary causes, you can understand why permanent status as a disabled person might leave some people out. What I hear when I hear “autism is always a disability” is “there are only two genders: male and female.”
my tendency is to laugh at my first impressions. something in my history casts a sinister spell that even the simplest question disperses. delightful surprises arise when i go beyond the first brush of my eyes. followup questions are the love language in my dialogue with life.
