fitness, in the modern economy, is the ability to engage in any given task, for as little or as long as one is conscripted, without asking what the project contributes to;
propelled onward by a belief that the designers of the project have our collective interests in mind;
that the project is always becoming more refined;
and that today’s toxic inefficiencies are excusable, being that they contribute to our salvation as a species.
understanding this, my unfitness makes much more sense to me, and i embrace it wholeheartedly.
Our friend Tammy Zo (Pollard) needs our support. She is homeless, and in grave danger of losing her belongings, many of which are cultural archives and work that she has created herself. The fact that she needs our support is a consequence of our culture’s failure to maintain mutual support networks independent of institutional channels, and failure to recognize the long arcs of creative people in our communities—especially women—and their support needs.
I have written about this before, and will continue to do so. In healthy societies, where everyone knows one another and recognizes everyone as valuable, care is a distributed function of the economy—not merely transactional. Child-rearing is a community responsibility, not isolated within a nuclear family. People who function as culture-bearers are supported by people who function as food processors, and tradespeople, and caregivers.
In our modern society, each person is expected to be their own provider, caregiver, support person, as well as generating some economic surplus to feed the institutional economy. This is not sustainable, especially for many culture-bearers, whose sensory and cognitive architecture is often arranged to process a specific field of knowledge in a very deep way. People that are wired to do specific work are often pushed into work environments that are hostile to their nervous systems, and the burden of adaptation is placed on the individual rather than the workplace.
Some creatives are able to find support through project management—grant writing, proposals, partnerships that enrich institutions while meeting the needs of the creative person. Some are able to work this particular landscape to meet their personal needs along with that of their work. Unfortunately, even in the best of times, these processes are not easy for someone to manage alone—again, I’m emphasizing this idea of distributed care. In our current economy, cultural institutions that thrived for decades are being shuttered due to lack of funding. Tammy’s situation is the downstream consequence of this cultural drought.
Certain people are the sensory apparatus of the community. What sounds like a personal cry for help is actually an alert to the larger processes that are happening around us. We have often been trained to dismiss people asking for help as irresponsible, as disorganized, as failing to manage resources.
But if we understand that funding for creative and cultural institutions is hemorrhaging right now, (I can provide receipts if you’re interested), we will understand that the suffering and dire straits of our creative friends in our communities is not a matter of personal failing, but of a lack of scaffolding—we haven’t built in the horizontal networks that support us when the vertical infrastructure evaporates.
And furthermore, the burden falls more cruelly on women creatives, who are expected to provide emotional labor for their communities, while still remaining legible in their creative pursuits—which often require long periods of gestation (artworks and cultural curation projects require no less expenditure of energy than children). Women who are struggling are often perceived with less sympathy and understanding than their male peers, as their need is read as a failure of a provider of emotional support to provide. This is an unspoken agreement that is devastating in reality. Many will not recognize it, but for many, it is just the way every day is organized.
At some point, it would be a good idea to set up community institutions to provide support to creatives in times of need. In the meantime, we need to recognize moments when individuals need our support, and do what we can. There are a number of ways to support our friend in her time of need.
Access to stable housing (so important for creatives who need stability to collect their materials and thoughts)
Personal storage space that is not time-limited and subject to seizure (this can be any secure, unused space—an attic, basement, outbuilding)
Access to regular safe quiet space, independent of housing
Access to restorative care, such as bodywork, massage, engaged conversation, body doubling, walking and movement partnership
Access to arts and cultural funding through grant-writing for specific projects
Access to nutrition
Access to unstructured social time enjoying one’s surroundings and the simple joy of being together
Thanks for listening, and please consider how you can be an agent of support for the culture and bearers of the community, who define our values and identities.
the etymology of the term ‘autism’ derives from an idea that a person with autistic traits is somehow isolated in a world of their own, that others can’t reach.
i would offer that this is exactly wrong, and a projection by an observer with a mindset built from a variety of assumptions that prevents them from understanding the way the observed person moves through the world.
the isolation being described is that of the observer, not the observed. an isolation from nature, and from processes that take place across long arcs, and within complex systems.
and this isolation prevents the observer not only from understanding the observed, but from understanding their own true nature, and the ways that certain qualities that appear awkward in a limited social context are vital for the human project as it plays out in relationship with nature, the earth, and the universe.
for this reason, i advocate for new language that acknowledges the contribution of the person who moves across a longer arc; whose body remembers what has always been important, even when people in the room have forgotten; whose mind forgets what is not important, even when the people in the room are catastrophizing about a missed deadline; whose presence requires the room to reassess what is important at every turn; whose character collects specific fields of information that, when recognized, enrich the community in unmonetizable ways.
so, i’m going to be speaking in awkward sentences, as i try to articulate the experience, from the inside, of a person who recognizes something of what is important; who recognizes and loves themselves and those around themselves; and who is unsatisfied with the direction that a large swath of humanity has taken—away from nature, and a harmonious relationship with the universe.
sometimes, in coming to our senses, it’s important to disengage from a compulsion to make sense. thank you for your attention to this matter.
This series explores human traits and behaviors that are pathologized in the modern Western office-industrial complex, with the intent to spark cross-cultural discussion, and reassessment of what it means to be divergent.
Two gait strategies, same anatomy, different verdicts—depending on what the ground is asking of the foot, and who’s asking the questions.
Toe-walking—prioritizing the ball of the foot in walking or running—does not appear in the DSM as such, but it is often used as a red flag to point to a possible diagnosis of autism—toe-walking correlates with a sizable subset of the autistic population. Let’s look at this phenomenon not as an individual trait, but as a response to an environment.
Emplaced-culture gait: where the foot meets varied, unmediated terrain—sand, root, gravel, cold stone, hot earth—a forefoot-first strike is adaptive, not a symptom. The ball of the foot reads the surface before committing weight to it, spring-loads the arch, and keeps the heel (a poor sensor, a good lever) out of the way until footing is confirmed. Populations who walk barefoot or minimally shod tend to show exactly this pattern. The ground has information in it, and the gait evolved to read that information continuously. Toe-first contact is like sensory antennae, extended forward. It is notable that many world cultures with a strong emphasis on running or walking over distance run barefoot or in sandals, using a toe-forward gait.
Portable culture gait: removes the variable terrain and replaces it with a manufactured constant: flat, predictable, shock-absorbed by shoe rather than by joint. Once the surface stops asking questions, heel-strike walking becomes viable—even efficient—because the environment is made invisible. The built environment doesn’t just tolerate rearfoot gait, it produces it, and then quietly promotes it to the definition of “normal.” Change what the environment offers, and you change which body-strategy counts as competent. The downside is the collapse of the body’s locomotor mechanism, arguably brought on by cushioning and a flat-footed gait, considering the West’s reliance on orthotics and adaptive footwear to compensate for the abandonment of a naturally adaptive gait.
When a child keeps toe-walking on a surface engineered to not need it, human behavior hasn’t changed—the semantic frame around it has. In an emplaced culture, toe-walking is terrain-reading. In a portable culture accustomed to a manufactured environment, with the terrain-reading no longer required, the same motor pattern reads as excess—unexplained, and therefore suspect, and therefore diagnostic. Idiopathic toe walking gets pathologized, and its strongest correlate—autism—gets folded in via the sensory-seeking hypothesis: forefoot strike and calf loading generate more proprioceptive signal per step.
Read with care, that’s not dysregulation: it’s the nervous system requesting the same ground-information that emplaced walkers require from the natural environment. In a sense, it is a refusal to abandon an adaptation to a natural environment, and to take for granted that the floor will always be flat.
Recognizing toe-walking as a somatic or behavioral difference isn’t wrong; it’s just wrong to fail to recognize that it is an adaptive mechanism being used across natural and constructed environments—and that there may be some somatic wisdom in maintaining this adaptation.
Portable culture manufactures a flat, silent world, then treats any body still listening for natural variation as broken.
Considering this, what do we have to learn from emplaced, barefoot cultures? What are we willing to give up in assuming that the future is a manufactured environment, that places no demands on the body to read the room?
There is something in the body that is always listening. Let’s run with that.
Many traditional cultures around the world—what I would call emplaced cultures—have sustained populations for millennia, within different watersheds, meeting different needs with different answers. Care distributed through community and across generations, calibrated to the place the community inhabits.
Western medicine arrives with its own language—what is right and observable in every case across place and time, with the body as the background—dismissing what it can’t quantify and trace to prior research. Its real achievement is mechanism. It can name an endocrine disorder, or sequence the removal of a tumor. Many traditional wisdom traditions had their own explanations for these conditions—accounts Western science now treats as unsatisfactory and obsolete.
But Western medicine is not famous for tracking complex systems. What environmental conditions produce disease and mental illness at population scale? What cultural practices sustain quality of life across a community? Western science is moving in those directions, but movement is slow.
Many traditional cultures solved these problems long ago, in the social organization itself—health is in how we live together, not in how many reps we do of an exercise. They simply didn’t pursue the technology needed to solve the tumor and the endocrine disorder—social order took precedence over bodily order. Different priorities, different unsolved problems.
The trade, plainly: traditional culture does 95% of the work of keeping a community healthy. Western medicine covers the remaining 5%—acute care—and offers almost nothing for the rest, beyond aphorisms about getting enough exercise and eating healthy. Western medicine is a scalpel. What’s happening is the scalpel is being used to excise whole communities to solve one liver disease.
What we’re seeing now is that traditional communities across the Global South are sending their people into Western medical training—for community service, but also for advancement, and for escape from poverty. In the process, traditional practices are being abandoned, either willfully or by neglect, in pursuit of this specialized 5% of care needs—missing that the other 95% was vital infrastructure, only invisible because it was unmonetized.
The question isn’t whether to let Western methods in. It’s how to let them in without letting them replace what they can’t see—infrastructure that was already doing work in spheres well beyond health. What strategies might result in sustainable culture with a net gain, rather than a trade?
The community might send someone already recognized as a healer to study advanced medical interventions for acute needs. Or a second person in the traditional care economy might be sent to work alongside the healer, rather than instead of them.
The boundary between emplaced and portable doesn’t need to be a wall. It only needs each side to keep its debts—emplaced culture answerable to land and ancestors, portable culture answerable to what it can actually prove.
The innovations Western culture offers can be enticing and addictive—like social media. A firm grounding in systems that have served communities across time keeps those innovations from pulling humanity off course.
I’m a bi-gender person—masc and femme together in parallel unison. Like a Tootsie Roll, a Twinkie, a Ho-Ho, or a KitKat, I have a more brittle, masc outer layer; and a creamy, femme inner core.
The femme part of me has been surprised when I have proposed activities to femme friends that I think of as normal and platonic, like getting together to braid one another’s hair or do nails or other grooming activities, along with gossip and food and music. The response I’ve gotten doesn’t tell me that the idea is being rejected because it came from someone with a masc presentation, but just that the idea itself feels icky or weird or frivolous, regardless of who proposed it.
I think we’ve reached a time of cultural compression when the the need to mask in public makes casual intimacy too costly—if we forget for a couple of hours that we’re supposed to be competing with one another, and stepping on one another’s shoulders and fingers and toes, we’ll miss an opportunity for social advancement. Moments of casual intimacy remind us of the brutality of the work environments we operate within, and since it seems that brutality is unavoidable, it is the intimacy that becomes the thing to avoid.
And since I experience this casual intimacy as a kind of vitamin—an important part of a balanced social diet—I recognize that we have created a condition where everyone is starved of something that would always be available if we would collectively let down our guard and stop performing invulnerability. We hunger for it, but someone’s rules say that we are only allowed to experience it within a contractually sanctioned relationship, so when we get feelings outside of those pigeonholes, there is a conflict—between the natural tendency toward connection, and the imposed imperative to suppress the connection.
This being so, I own that I will always be perceived as too much—”too familiar,” “flirty,” “inappropriately intimate,” “overly emotional,” “dramatic,” “too informal,”—simply because I refuse to accept the inevitability of the brutality that many people face in their work and social environments. I refuse to suppress the natural tendency toward connection. I refuse to impose a contractual constraint on where I experience intimacy. I feel it is actually my whole job to remind my community that productivity is not the goal, that free time is a virtue to be cultivated, and that casual intimacy is our actual settled and natural state.
That being so, I might describe the grief I feel about the loss of a loved one in the middle of a work meeting. I might express that an interaction with an especially loud and reckless motorcycle made me feel vulnerable when applying for a business license. I might point to the behavior of a person in a management position, and show how that person is taking an opportunity to punch down, rather than being accepting, inclusive, and supportive. “Too much” means “not silent,” and in spaces where we are expected to disappear, “not silence” equals “too much.”
And to be clear, what I am calling intimacy has nothing to do with sexuality or even physical touch. Intimacy is simply the willingness to return to our basic, true character in the presence of another, and to drop the mask that work and social navigation require of us. Intimacy is simply abandoning the performance of invulnerability for a moment or two. Intimacy is simply acknowledging the fiction of independence, and experiencing the wonder and joy of interdependence, even if only for a couple of moments.
At the present moment, I propose that the most radical and revolutionary act we can engage in (but the most powerful, since we can engage in it any time) is simply the act of casual intimacy—when we acknowledge that each of us has a way that we care for ourself, and that we could just as easily care for one another in the same moment.
As we brush our hair, realize that we could be engaging in casual intimacy by brushing someone else’s hair. As we manage our pet’s excrement on a walk, realize that we could be engaging in casual intimacy by helping a loved one who needs support to manage their excrement. As we feel a moment of grief for the loss of a loved one, recognize that we could just as easily feel a moment of grief alongside a friend who is experiencing a similar moment.
I propose that the more we engage in casual intimacy, the less we demand that our contractual relationships fulfill our needs for intimacy, and that that quality in itself is liberating to both sides of our relationships.
So, on that note: let’s get together soon to braid each other’s hair, or do our nails together, and have some snacks and music and gossip time, and maybe cry about our dog that just died, or about the parent that doesn’t remember us that we are caring for.
In this economy, this is the type of care that cannot be monetized, and that is only available to the privileged. Let’s privilege one another with casual intimacy, and invite whomever we can into that state of privilege—because if everyone is included in it, it is no longer a privilege, but a right—simply a natural state of being, around which we organize ourselves, around everyone’s comfort, and not just our own.
all of the reasons to hate ai and to love ai are valid, to a point. it does things for us that are helpful to have done for us. it does things to us that are harmful to have done to us.
the main thing we should focus on is what it requires of us. it requires that power be centralized in such a way that concerns about water and land use are deprioritized. it requires that people who don’t have our best interests in mind influence elections. it requires that we relinquish our rights to our own ideas in the tos agreement required to use it.
ai is not local: it requires centralized control of a vast network of resources from around the globe. it doesn’t fit in a backpack.
ai is not democratic: the algorithms that deliver it’s results are designed by a small team that does not answer to us. it doesn’t respond to community review.
ai is not neutral: it’s knowledge base is a collection of writings that represents centuries of colonizers writing about encounters with beings deemed lesser. it doesn’t weight indigenous voices higher.
ai is not embodied: nothing in its database includes information that can only be experienced through the senses. it didn’t smell what you smelled.
ai has not experienced loss: it can tell you what grieving people have said, but it cannot experience their pain, and console you in the ways that only someone who has experienced loss can console you. it can’t adjust the way you’ve adjusted.
ai has never attended a birth, nor tasted the final breath of a loved one. it doesn’t know the poem your mother needed to hear for comfort.
ai is a performance by someone who was never there, but who requires you to hand over all rights to land, water, minerals, species diversity, diplomatic nonpartisanship, labor justice, bioregional congruity, indigenous stewardship, ecosystem integrity, economic equity, cultural heritage, family legacy, intellectual architecture, emotional elaboration, and environmental renewal.
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.
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.
