Month: July 2026

my mother, the maker

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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.

Pause. Reflect. Grieve. Celebrate. Repair. Rinse. Repeat.

more spectra

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In my last reflection, I mentioned the intersection of race, gender expression, and neurodiversity in my family story—qualities that all have spectra embedded in them. I didn’t touch on culture and class, which are also observable as existing on spectra.

I was shaped by aspects of Black domestic and expressive culture, but completely isolated from Black community. Likewise German immigrant culture, separated from an immigrant community that nurtured those specific traditional values. From this perspective, I’m able to observe in myself the interplay between race and ethnicity only from the margins of those spaces and states, not from the center. Blackness and whiteness are not fixed values; nor are Germanness and culturally displaced Africanness.

The family story, just in the 20th century—the people I shared a home with—starts on both sides with humble beginnings, and moves through privilege gained through luck and ingenuity. That privilege was not culturally embedded in our family—like our connection to ethnic culture and racial position relative to the dominant culture, it was only adjacent to the culture of American royalty—families who had known privilege for generations. My family was less like the Rockefellers and more like the Beverly Hillbillies with a multi-ethnic cast.

The arc of my family’s material wealth is remarkably graceful—a slow, upward curve, starting in the early part of the century, that reaches well above the median, into 10% territory, flattens in the 50s and 60s, and then draws slowly down to the bottom again in the present day. Through various circumstances and choices, the anchors that make generational transfer possible simply did not survive.

This is just a thumbnail sketch of the part of the family I was embedded within. It doesn’t take into account the Swedish immigrants and consistently lower-middle-class whites descended from earlier waves of European immigration who never accumulated anything like transferable access to the American dream. Generations of people on both sides living in the moment, poverty and privilege passing through them, neither pole of the spectrum inhabited for long.

spectra

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i grew up in a biracial household where Blackness, white passing, and whiteness were all intertwined, as a neuroqueer, bigender, autistic child with high justice sensitivity, but low hierarchy awareness. being late-diagnosed, i didn’t have names for a lot of my experiences, but looking back, it all makes perfect sense. none of the labels i’ve used are choices i’ve made. they are simply acknowledgements of what always was.

tl:dr: recognition ≠ choice

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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.

it’s yours

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a child entrains
to the sound of her nana’s voice,
and in the attunement,
learns to sing

and know belonging
long after nana is gone

one day she is singing
her song of belonging
and she is told, “stop!
you stole that song!

it doesn’t belong to you
it belongs to my people”

and she wondered “why,
if we both learned the song
from our nanas, can we not
belong, together?”

because she still belonged to her nana
she asked her to help her understand.

“oh, honey, baby, sweetie pie
the world is hard, don’t pay it no mind.
some people only
see with their eyes.

you go right on singin’ our song.
i’m here with you, baby. you’re mine.

you might have to keep it
in private, until
you meet someone who
hears with their eyes,

and sees with their heart. don’t worry, baby,
you’ll find your people. maybe not tomorrow,

nana’s here with you, forever,
and forever is a mighty long time.”

bigender identity journal entry

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i passed 3 tween girls doing a coordinated dance for tiktok on a walk

recognition: that’s me.

memory: when i was a kid, i wanted to play jump rope and hand-clapping games with the girls, instead of kickball and four-square. the boys were always trying to win, and would spike the ball; girls were smiling at each other, clapping hands and hugging.

i tried a couple of times to fit into these girl groups, but it was awkward, and i just gave up. i went to a different school every year, but that aspect of social life was always the same, as was my inner sense of association.

it was like not being allowed to be myself.

you have to ask yourself

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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?

unkind binaries

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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.”

?

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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.

complementary adaptation: toward a kinder view of neurodiversity and disability

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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.