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musical environmentsThe care economy is an emerging model for supporting people, things, and processes we’d like to see more of in the world.
give to rykSaying 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.
Two people in a boat. One can row, but cannot navigate. The other can navigate, but cannot row. If we view each as a whole, each has both an asset and a liability—each is both abled and disabled. If we view the relationship as a whole, we can describe things differently.
If participation and cooperation are both given, and both needs and abilities are transparent, we can say, for the sake of argument, that we have a balanced system. Ability and disability are actually complementary parts of a balanced system.
For the system to remain balanced, the requirement is that we do not judge one by the standards of the other. Both are necessary for the system to be balanced. It is only in separating the ability and disability within the system—through creation of a standard that applies to each equally—that disability as a permanent status arises (or ability, as a permanent status, for that matter).
Humans are a social animal, and no human can be said to exist in isolation. The work of survival as a cohesive community is complex. If we view human evolution as a community project, rather than a process of creating ideal and identical individuals, perhaps it’s fairer to say that humans are more like the two people in the boat that opened this narrative than like individuals striving toward undifferentiated perfection.
I believe that as our understanding of neurodiversity deepens, we will begin to see the complementary nature of different sensory, cognitive, behavioral, emotional, somatic, and relational expressions within a community of people engaged in the work of surviving within an ecosystem, and start to recognize the unique socio-ecological niche that each is adapted to.
That being said, humans have created systems that separate us from the ecology we evolved over millions of years to function within—capitalism being the most recent and totalizing form this separation has taken. Any framework, whatever its organizing logic, that substitutes an abstracted, portable standard for embedded relationship will distort our ability to view each type of expression fairly, in context. In the deepest sense, it is these imposed frameworks—not one’s specific neuropsychobiology—that create the permanent state of ability or disability.
Is this an argument that disability does not exist, or should not be accommodated? Absolutely not. Does the human organism itself demand that we recognize the various socio-ecological niches for which each individual may be uniquely adapted? Also no—evolution continues, and each part of any ecosystem is changed by interaction with the others—just as we were once single-celled life forms adapted to an underwater ecosystem that no longer exists, we will adapt to whatever conditions our survivors find themselves within (if there are survivors—evolution is a slow process, and the changes we have made to our ecosystem have arguably outpaced it).
What, then, is the good of understanding or accepting a principle like complementary adaptation, if we are eventually going to change anyway? From a human sociological perspective, it allows us to be both kinder and more accommodating of difference. In recognizing the many ways that variations in human adaptive expression contribute to the well-being of a complex social organism within an ecosystem, we can move people toward societal roles for which they may already be well adapted, rather than forcing them to adapt to environments where their permanent disability status is the only option. It changes the framework for our application of care—to use our earlier analogy, to match rowers with navigators, those who thrive as nurturers with those who thrive with care, across a broad spectrum of socio-ecological niches.
What this requires of us, as those who study human variation, is to recognize the many ways that current conditions game the system for the comfort of some, at the expense of basic human dignity for others, and to recognize the gatekeepers who enforce the conditions we find ourselves in, be they actual humans, economic systems, or simply cognitive frameworks. It would be naive to think that we can simply abandon every framework we’ve inherited outright, but making the shift to recognizing human variation as a relationship affords us a direction for a new field of study—and nudges us toward a kinder, more integrated relationship with our world and with one another.
be honest:
is culture the ability
to sing the same songs together
in joyful abandon
with your neighbors?
is culture
a shared recipe,
or a coordinated
childcare plan?
is culture the fact that you’ve shopped
at the same Target,
or are recovering from the same expectation
to sit still and keep quiet?
is culture the purchase
of the right brand,
that signals casual,
but not struggling?
be honest:
what is culture,
to you,
and who
is left out?
are you
feeling proud
of your culture,
right now?
what opportunities to participate
in the culture you identify with
have you passed up because
you were too busy?
what happens
when no one
shows up
to cultural events?
be honest:
do the ones
who pay
your paycheck
have your back?
does your work
fulfill the standard
you set for yourself
at 20?
does access
to the levers of power
make your
family happier?
does the time you spend
at work compensate you
for the time you’ve lost
with your family?
be honest:
what the fuck
are we, as people
who love, doing here,
right now?
On June 29, 1776, five days before Philadelphia’s Declaration was signed, a different founding took place three thousand miles west, on the shore of a California lagoon. Spanish soldiers and Franciscan friars said the first Mass beside a creek they named Arroyo de los Dolores, the Creek of Sorrows. Within months they had raised a fort near the Golden Gate and a mission a few miles inland—the Presidio of San Francisco and Mission San Francisco de Asís, later known by the name of that creek: Mission Dolores. And the labor for these projects was largely coerced from people whose ancestors had inhabited the land for countless generations.
The people known today as the Ohlone were actually some forty or so autonomous tribelets, each with its own territory, leadership, and law. Ohlone people had built more than four hundred shellmounds along the bay, some rising sixty feet, structures that were at once home, cemetery, and land claim. They moved by season through a landscape they actively cultivated—burning grassland to keep it productive, harvesting acorns, shellfish, salmon, and waterfowl in cycles refined over centuries—sustaining one of the densest Indigenous populations found anywhere north of Mexico. Their relationship to this land had never required ratification—there was no separation between land and people. The Mission and the Presidio projects forced people who knew no other home to build temples to institutions determined to erase them.
In exchange for their life, an Ohlone person was baptized, becoming a neophyte, and was bound to the mission, forbidden to leave without permission, punished for infractions as small as missing Mass. Their forced labor built the mission itself: making and stacking tens of thousands of adobe bricks, tending thousands of sheep and cattle, working looms that turned wool into cloth, and breaking the land into parcels for an imposed agriculture from a different place. Disease did even more damage than coercion: measles moved through the mission’s population in repeated waves; birth rates fell far below death rates; the cemetery behind Mission Dolores today holds roughly five thousand unmarked Indigenous graves—a population lost within the span of a single lifetime.
The conviction of the Catholic Church that their goals and methods were universal and ageless, (justifying all means of human cruelty), were not strong enough to sustain the mission system when the Spanish Empire withdrew their sponsorship. In 1834, just 58 years after the founding of Mission Dolores, (the span of one lifetime), the mission as an institution ended, while returning nothing to the people who had built it.
California’s statehood in 1850 made things worse: a second wave of violence during the Gold Rush, the Californian genocide, arrived alongside eighteen treaties negotiated with California tribes and then never ratified by the U.S. Senate. The Muwekma Ohlone, whose homeland spans the East Bay, remain without federal recognition to this day, despite a documented, unbroken lineage—acknowledged by history and by their own persistent community, but absent from the one federal category that would formally recognize either.
Despite the cruel realities of forced separation of a people from the systems that sustained them for millennia, the spirit of the people of this place did not break. In 2011, Ohlone organizers occupied a construction site in Vallejo for a hundred and nine days to stop development on Sogorea Te’, an ancestral village and burial ground. The occupation was successful in a real sense: the land was transferred to a federally recognized tribe, (albeit one with no connection to the site—because no local Ohlone group has received the Federal recognition that would grant them entitlement—another chapter in the long history of erasure that began in1776).
Rather than wait on a system built to keep failing them, the organizers founded the Sogorea Te’ Land Trust the following year around a mechanism that doesn’t depend on federal recognition at all: the Shuumi Land Tax, a voluntary annual gift from non-Indigenous residents of Lisjan Ohlone territory, moving resources by relationship instead of by law. The trust now stewards more than a dozen sites across the Bay, including ground reclaimed from an eighty-year parking lot in West Berkeley that sits on the same shellmound lineage this history began with. It has raised the first ceremonial arbor built in the region in over two hundred fifty years, and it is developing a cemetery to properly reinter ancestral remains still displaced since the mission era—a direct answer to the unmarked graves still lying behind Mission Dolores.
Two nations mark two hundred fifty years on this stretch of coast this year. One does it with fanfare, with a holiday, and a dream of equality that was never written to include everyone. The other has spent the same two hundred fifty years proving that survival doesn’t require a declaration at all—only language kept alive in secret when it couldn’t be kept alive in the open, land bought back one parcel at a time when it couldn’t be returned outright, and innovative ways around the systems imposed on them from outside.
Join me in celebrating 250 years of Ohlone pride.
Education builds bridges to new understanding. (educare: to bring up; to nurture). Indoctrination burns bridges and prevents new ones from being built. (endoctriner: to instruct; to imbue with an idea or opinion). Education makes the world bigger. Indoctrination keeps one sequestered in a silo.
The reason anti-woke folks rail so hard against indoctrination is that they were shaped by indoctrination that was presented as education; and in the absence of actual education, it’s easy to conflate the two, or confuse one for the other. Their impulse to resist indoctrination is sound. The target of their ire is misplaced.
The people who built these systems often believed in them completely—which is exactly what makes indoctrination so effective. You don’t need cynics at the top. You need true believers who’ve never crossed the bridge themselves.
That’s how the confusion between indoctrination and education perpetuates itself—not through deception, but through unexamined inheritance.
‘woke’ just means ‘educated, and ready to cross the bridge when it presents itself.’
‘anti-woke’ just means ‘bridges are dangerous: it’s only safe in the silo.’
Good for you, for recognizing the importance of education, and the power of indoctrination to limit education’s reach. If you’re sitting with the anxiety of a world widened beyond the scale of what you were prescribed, just reach out. Folks are here for you—just over the bridge.
to be woke is to have a visceral sense of justice, as reliable as the senses of sight, hearing, smell, touch, taste, and cognition—that allows one to recognize that the current language of justice is inadequate, as justice is not applied equitably across all who would access it; and to participate in creating language that leads to equitable application.
to be a woke ally is to recognize that one lacks the visceral sense of justice; to believe those who experience it; and to use the other senses to fill the gap, trusting that the language will mature if allowed to do so—to be blind, but willing to coexist with the sighted.
to be anti-woke is to deny the existence of the visceral experience of justice; to belittle those who would enrich its language—to be blind, to deny the existence of sight, in the most literal sense, and to refuse to coexist with the sighted.
only a person who has had the sense of justice bred out of them can own humans or force them through contract into unpaid labor; deny them equal access to the right to vote; justify and continue to fund genocide; or accumulate wealth while others starve.
knowing that the path of the ally is available, one follows it to redemption.
never suspecting that justice is lived experience, the whole world becomes one’s adversary.