Author: unstrangemind (Page 1 of 7)

A Guide for Trans, Disabled, and Neurodivergent Lives

When an earthquake struck recently, a video spread across the world: a herd of elephants, sensing the tremors, quickly closed ranks around the youngest and smallest among them. Without hesitation, they circled their bodies to protect their most vulnerable members, standing shoulder to shoulder against an invisible threat. It was a wordless act of collective survival, woven not by strategy or command, but by instinct—an ancient wisdom carried in the body.¹

Mutual aid is that wisdom.

It is as natural as breath, as old as life itself. It is not a political invention, nor a new social trend. As Peter Kropotkin wrote more than a century ago, “Mutual Aid is as much a law of Nature as mutual struggle, but it is far more important.” ² Cooperation—not domination—has been the secret to survival across species and across history.

For disabled, trans, and neurodivergent people, mutual aid is not just an idea; it is a daily necessity. It is the living memory of our ancestors, who learned to survive by caring for one another when the systems around them refused to. As Shayda Kafai reminds us, “Our survival is not passive. It is collective dreaming, fiercely willed into being.”³

Mutual aid is not charity. It is not a handout or an act of pity. It is a profound, ongoing, messy practice of loving each other into the future.

This essay is a guide: an invitation to remember what we already know deep in our bones. It will explore what mutual aid is, why it matters, and how we—especially those of us who are trans, disabled, autistic, and marginalized—can practice it, build it, and sustain it together.

What Is Mutual Aid?

Mutual aid is the practice of collective coordination to meet shared needs, rooted in solidarity rather than hierarchy or charity. It happens when people come together to help one another survive, not because they are paid to, not because they have been granted authority to, but because survival is something we achieve together—or not at all.

Dean Spade defines it simply: “Mutual aid is collective coordination to meet each other’s needs, usually from an awareness that the systems we have in place are not going to meet them.”⁴ It is a survival strategy, a resistance practice, and a way of building the world we want to live in—one relationship, one act of care at a time.

Importantly, mutual aid is not charity. Charity tends to flow from the top down: from those with resources to those deemed “deserving,” often with strings attached or with the underlying assumption that those receiving help are somehow deficient. Mutual aid, by contrast, insists that no one is disposable, that we all have needs, and that offering care is not an act of pity, but of solidarity. As Leah Lakshmi Piepzna-Samarasinha puts it, “Mutual aid is revolutionary love without charity.”⁵

Mutual aid is not an invention of political activists. It is an ancient practice, visible across the natural world: in animals who protect and nourish each other, in early human societies that relied on collective hunting, child-rearing, and defense, and in marginalized communities who have always had to find ways to survive abandonment by dominant systems.

As Shayda Kafai writes, “Mutual aid is not charity. It is cripped, queered, decolonial survival work.”⁶ It is survival shaped not by dominance, but by relationship, interdependence, and creative resistance.

At its heart, mutual aid is a refusal to leave each other behind.

Why Mutual Aid Matters

Across the natural world and human history, it is not the strongest, richest, or most ruthless who endure. It is those who learn to cooperate, to share resources, to defend and nourish one another.

Peter Kropotkin observed that “Those communities which included the greatest number of the most sympathetic members would flourish best.”⁷ In other words, survival does not belong to the fittest alone—it belongs to the most caring.

Today, mutual aid remains a vital survival strategy because the systems meant to protect us—state institutions, capitalist economies, nonprofit organizations—are often designed to abandon us instead. Especially for disabled, queer, trans, and poor communities, survival has never been guaranteed by government programs or charitable initiatives.

It has been built, instead, through networks of mutual care: friends sharing medication, families organizing food distributions, strangers pooling resources for emergency bail funds, neighbors building disability justice collectives from scratch.

Trauma, isolation, and systemic abandonment can fracture movements.

When marginalized people are pitted against one another for scraps of access, representation, or funding, solidarity weakens and hope shrinks. But mutual aid cultivates resiliency—both emotional and structural—by teaching us to rely on each other instead of appealing to distant powers. As the Jane Addams Collective reminds us, “Mutual aid cultivates resiliency as a methodology to counter the traumas weaponized by the various oppressive forces that divide and diminish us.”⁸

Movements survive not because they are funded, but because they are loved into continuation. As INCITE! writes, “Movements are made up of people who do the work because it must be done, not because they are paid to do it.”⁹ Mutual aid is not glamorous, and it is rarely recognized by the institutions of power. But it is how we endure.

It is also how we dream. As Shayda Kafai beautifully puts it, “Crip persistence is the magic that manifests radical new worlds.”¹⁰ Through mutual aid, we survive not only the brutal conditions of the present, but we lay the foundation for futures shaped by care, creativity, and collective will.

Core Principles of Mutual Aid

Mutual aid is not a project of rescue. It refuses the top-down model where resources are dispensed to the “deserving” by the powerful. As Dean Spade explains, “Mutual aid is not charity.” ¹¹ Instead, it is solidarity: the recognition that we all have needs, we all have gifts, and we are in this together.

At the heart of mutual aid is interdependence, not individualism.

The myth of the “self-made” person has always been a lie, but it is a particularly dangerous one for those of us whose survival has always depended on networks of shared care. In mutual aid, asking for help is not a failure; offering help is not an act of superiority. Care moves back and forth across relationships like breath.

Consent and access intimacy are also core principles.

Access is not something to be grudgingly provided, or treated as an afterthought. It is an act of love and liberation. Access intimacy, as defined by Mia Mingus, is the “feeling when someone else ‘gets’ your access needs without you having to constantly explain them.”¹² It is the trust, ease, and emotional closeness that can grow when access is anticipated, respected, and lovingly woven into relationship.

As Shayda Kafai echoes, “Access intimacy can transform ordinary access into a tool for liberation.”¹³ In mutual aid, access is not a checklist; it is a relationship—one where the needs of all members are met as living, shifting realities, not as inconveniences or exceptions.

Mutual aid is not neat, predictable, or flawless. It is a living, breathing practice shaped by exhaustion, mistakes, grief, repair, and love. As Leah Lakshmi Piepzna-Samarasinha reminds us, “Care webs are messy, imperfect, and precious.”¹⁴

There is no perfect mutual aid group, no flawless care network. The work is to keep caring anyway—to adapt, to forgive, to hold each other through the breaking and remaking that survival demands. In a world that punishes disability, slowness, and complexity, mutual aid insists that imperfect care is still real care.

Mutual aid also moves at crip time: a pace that honors rest, fluctuation, and the unpredictable rhythms of real bodies and minds. Survival is not a sprint. Building the future is not a race. Mutual aid survives because it refuses the violence of urgency that capitalism demands.

These principles are not abstract ideals. They are how we build the conditions for each other’s survival, and each other’s dreams.

How to Find, Build, and Sustain Mutual Aid

Mutual aid begins wherever two or more people decide to show up for each other.

It does not require permission, funding, or a perfect plan. It begins in the smallest actions: sharing meals, organizing ride shares, creating a group text for mutual check-ins, offering skills, supplies, or shelter. It scales not by centralizing, but by multiplying. As Dean Spade notes, “Scaling up means building more and more mutual aid groups, not building one big organization.”¹⁵

If you are looking to join an existing mutual aid group, start locally.

Many cities and towns have mutual aid collectives organized around geography, identity, or specific needs. Search community bulletin boards, online platforms, social media, or ask local organizers. Be prepared for groups that look informal, decentralized, or messy—this is often a sign of vitality, not disorder.

If you are starting something new, begin with a few questions:

• Who are the people you are accountable to?

• What are the immediate unmet needs in your community?

• What can you offer, sustainably, without burning out?

Building mutual aid groups that are accessible and trauma-informed is crucial for sustainability.

The Jane Addams Collective reminds us that group trauma can derail movements if it goes unrecognized.¹⁶ Signs like hypervigilance, infighting, shame spirals, and burnout are not personal failures—they are common responses to living under oppressive systems. Recognizing these patterns with compassion, rather than judgment, is key to surviving together.

Accessibility is not just about wheelchair ramps or captioning—although those are vital. It is about pacing, sensory access, communication styles, emotional safety, and flexibility. Leah Lakshmi Piepzna-Samarasinha writes, “Our survival is in each other.”¹⁷ Care webs succeed when they move at the speed of trust, when they anticipate needs without shame, and when they make room for bodies and minds that change day to day.

Mutual aid groups are sustained not just by logistics, but by storytelling, art, and relationship. Songs, zines, newsletters, oral histories, and shared rituals root mutual aid groups in collective memory and joy. Shayda Kafai describes crip-centric liberated zones as places “where we can exist, thrive, and breathe beyond oppression.”¹⁸ Building mutual aid is not only about distributing resources—it is about weaving together the emotional and cultural fabric that makes survival not just possible, but meaningful.

To sustain mutual aid is to remember that imperfection is expected, that conflict can be generative, and that no one has to carry everything alone. Communities thrive not when they are flawless, but when they are flexible, forgiving, and rooted in collective care.

Challenges: Burnout, Conflict, and Sustainability

Mutual aid is often romanticized as purely joyful, but the work is hard. It happens inside communities shaped by trauma, scarcity, and structural abandonment. It asks us to show up with care even when we are exhausted, grieving, or scared. And because it exists outside of formal institutions, mutual aid groups often carry more emotional labor than they can safely hold.

One of the most persistent traps is the pull toward professionalization—a slow slide toward nonprofit-style organizing that reintroduces hierarchy, paperwork, and dependency on external validation. As INCITE! warns, “The non-profit industrial complex promotes professionalization over organizing, competition over solidarity, service over struggle.”¹⁹ These models encourage groups to compete for funding, appease donors, and shape their work around institutional metrics of “success,” often at the cost of their original values and relationships.

Even in explicitly non-hierarchical spaces, trauma can erode trust and generate patterns that drain group energy. The Jane Addams Collective names this plainly: “Trauma can destroy political organizations.”²⁰ Hypervigilance, perfectionism, internal policing, and withdrawal are all common symptoms of survival-mode politics.

To build sustainable mutual aid, we must make space to heal while organizing—not demand that people be “fixed” before they participate. We must design care webs that account for burnout as inevitable, not shameful. This includes normalizing cycles of retreat and return. Some of us will need to step back. Some will disappear for a while. Some will leave permanently. That is not failure. That is part of how ecosystems function.

As Leah Lakshmi Piepzna-Samarasinha teaches, “Access is love.”²¹ Love means letting people rest. Letting them leave. Letting them come back without punishment. And love also means not measuring anyone’s worth by how much they contribute.

Shayda Kafai opens Crip Kinship with the words so many of us long to hear: “You are not too sick, too disabled, too sad, too crazy, too ugly, too fat, or too weird.”²²

You do not have to be well to deserve a place in the circle. You do not have to be productive to be part of the collective. Sustainability doesn’t come from perfection. It comes from holding space for each other’s limits with tenderness and trust. From organizing as if everyone’s bodymind matters—including your own.

Conclusion: The Future We Are Already Making

Mutual aid is not new.

It is ancestral, natural, and rebellious. It pulses through animal herds and coral reefs, through the grain baskets of Indigenous villages, through the whispered networks of queer survival, through the hands of disabled people holding each other up in hospitals, prisons, bedrooms, and streets.

As Kropotkin reminds us, even in the darkest eras, “The constructive forces of men—the forces of mutual aid—never ceased to act.”²³ Even when abandoned by empires, hunted by laws, or erased from official records, mutual aid persisted—not because it was permitted, but because it was necessary.

Every act of care we offer now—every meal shared, every ride given, every pill split, every crisis text answered, every ramp installed, every conflict repaired—is part of building the next world. Leah Lakshmi Piepzna-Samarasinha writes, “We are already building the next world, in how we care for each other now.”²⁴

Mutual aid is not about heroism. It is about persistence. About refusing the lie that we are alone. About organizing not just for resistance, but for presence—for being alive and held, right here, right now.

And it is about lineage. Shayda Kafai reminds us: “We are already our ancestors’ impossible dreams made flesh.”²⁵

When we gather in circles, when we center access and tenderness, when we protect each other fiercely and imperfectly, we are doing something ancient and new.

We are extending a thread of care backward and forward in time.

We are becoming the future that remembers how to love.

FOOTNOTES:

1. “San Diego elephants form ‘alert circle’ during earthquake,” KPBS Public Media, YouTube, April 15, 2025, https://youtu.be/IZ45kRP6LGE. ↩︎
2. Peter Kropotkin, Mutual Aid: A Factor of Evolution, Preface, p. vi (1902). ↩︎
3. Shayda Kafai, Crip Kinship: The Disability Justice and Art Activism of Sins Invalid, p. 8 (2021). ↩︎
4. Dean Spade, Mutual Aid: Building Solidarity During This Crisis (and the Next), p. 7 (2020).
   ↩︎
5. Leah Lakshmi Piepzna-Samarasinha, Care Work: Dreaming Disability Justice, p. 33 (2018). ↩︎
6. Shayda Kafai, Crip Kinship: The Disability Justice and Art Activism of Sins Invalid, p. 145 (2021). ↩︎
7. Peter Kropotkin, Mutual Aid: A Factor of Evolution, Introduction, p. 2 (1902). ↩︎
8. The Jane Addams Collective, Mutual Aid, Trauma, and Resiliency, Introduction, p. 2 (2019). ↩︎
9. INCITE!, The Revolution Will Not Be Funded: Beyond the Non-Profit Industrial Complex, Introduction, p. 2 (2017). ↩︎
10. Shayda Kafai, Crip Kinship: The Disability Justice and Art Activism of Sins Invalid, p. 26 (2021). ↩︎
11. Dean Spade, Mutual Aid: Building Solidarity During This Crisis (and the Next), p. 24 (2020). ↩︎
12. Mia Mingus, “Access Intimacy: The Missing Link,” Leaving Evidence blog, May 5, 2011, https://leavingevidence.wordpress.com/2011/05/05/access-intimacy-the-missing-link/. ↩︎
13. Shayda Kafai, Crip Kinship: The Disability Justice and Art Activism of Sins Invalid, p. 43 (2021). ↩︎
14. Leah Lakshmi Piepzna-Samarasinha, Care Work: Dreaming Disability Justice, p. 35 (2018). ↩︎
15. Dean Spade, Mutual Aid: Building Solidarity During This Crisis (and the Next), p. 41 (2020). ↩︎
16. The Jane Addams Collective, Mutual Aid, Trauma, and Resiliency, pp. 17–25 (2019). ↩︎
17. Leah Lakshmi Piepzna-Samarasinha, Care Work: Dreaming Disability Justice, p. 45 (2018). ↩︎
18. Shayda Kafai, Crip Kinship: The Disability Justice and Art Activism of Sins Invalid, p. 32 (2021). ↩︎
19. INCITE!, The Revolution Will Not Be Funded: Beyond the Non-Profit Industrial Complex, p. 45 (2017). ↩︎
20. The Jane Addams Collective, Mutual Aid, Trauma, and Resiliency, p. 23 (2019). ↩︎
21. Leah Lakshmi Piepzna-Samarasinha, Care Work: Dreaming Disability Justice, p. xiii (2018). ↩︎
22. Shayda Kafai, Crip Kinship: The Disability Justice and Art Activism of Sins Invalid, p. 3 (2021). ↩︎
23. Peter Kropotkin, Mutual Aid: A Factor of Evolution, Preface, p. vii (1902). ↩︎
24. Leah Lakshmi Piepzna-Samarasinha, Care Work: Dreaming Disability Justice, p. 95 (2018). ↩︎
25. Shayda Kafai, Crip Kinship: The Disability Justice and Art Activism of Sins Invalid, p. 156 (2021). ↩︎

WORKS CITED:

INCITE! Women of Color Against Violence, editor. The Revolution Will Not Be Funded: Beyond the Non-Profit Industrial Complex. Duke University Press, 2017.

Jane Addams Collective, The. Mutual Aid, Trauma, and Resiliency. Combustion Books, 2019.

Kafai, Shayda. Crip Kinship: The Disability Justice and Art Activism of Sins Invalid. Arsenal Pulp Press, 2021.

Kropotkin, Peter. Mutual Aid: A Factor of Evolution. 1902.

Mingus, Mia. “Access Intimacy: The Missing Link.” Leaving Evidence blog, 5 May 2011, https://leavingevidence.wordpress.com/2011/05/05/access-intimacy-the-missing-link/.

Piepzna-Samarasinha, Leah Lakshmi. Care Work: Dreaming Disability Justice. Arsenal Pulp Press, 2018.

Spade, Dean. Mutual Aid: Building Solidarity During This Crisis (and the Next). Verso, 2020.

“San Diego elephants form ‘alert circle’ during earthquake.” KPBS Public Media, YouTube, 15 Apr. 2025, https://youtu.be/IZ45kRP6LGE.

“Rarely, if ever, are any of us healed in isolation. Healing is an act of communion.”

bell hooks, All About Love

“Without community, there is no liberation.”

Audre Lorde

In memory of Karl Rudolf Zollner, who taught me about anomie and showed me how to keep weaving, even when the thread is worn thin.

Naming the Feeling

Lately, it feels like the world is coming apart and nobody knows what to do about it.

The headlines are relentless. Wars expand. Democracies crack. The air smells like smoke, and the water isn’t safe to drink. Food costs double, wages stay flat, housing becomes a fantasy. People go to bed scared and wake up tired. The future doesn’t just feel uncertain. It feels radioactive.

In public, we try to keep it together. We show up. We might smile. Maybe we make coffee. But underneath, there’s this tremor: Grief braided with dread. 

Conversations trail off into silence, or spin into panic. Everyone is either shouting or gone quiet. It feels like fewer people are gathering—pulling back, hunkering down, unsure how to speak into the whirlwind. And yet, in the middle of that silence, there are ruptures: crowds flooding the streets with signs and chants and righteous fury. 

The protests don’t undo the disconnection, but they remind us that we can still come together. Even now, something in us remembers how to link arms and say “no” out loud. 

The rest of life, though—ordinary life—often feels like it’s running on fumes. As if something vital has drained out of our daily rhythms, leaving behind a strange, brittle numbness.

It’s not just political chaos or climate grief or economic fear. It’s all of it, layered and compounding, grinding us down in ways we don’t always have words for.

But there is a word for what we’re feeling. A name for this community ache.

And it’s older than you might think.

What do you call this?

This fog. This thinned-out feeling that stretches across our days like plastic wrap. This heaviness that doesn’t crash in like a crisis, but accumulates like dust in the corners of our lives. The sense that something essential has gone missing—some shared rhythm, some common tether—and all that’s left is the performance of normalcy in a world that no longer makes sense.

It’s not just burnout. Not just loneliness. Not just fear. Those are all real, but this is something else—an atmosphere. A low, humming dread that soaks into everything: the way we move through public spaces, the awkward stiffness of once-familiar friendships, the impulse to cancel plans not out of laziness but out of psychic fatigue. We are, many of us, still functioning. Still showing up. But we’re doing it through a kind of psychic static—surviving in a system that no longer feels coherent.

So what do we call that?

When the structures are still technically standing, but the soul has gone out of them?

When the connections are still there on paper, but feel spectral?

When the world hasn’t ended, but something in it has gone very, very quiet?

There’s a name for this.

But it’s not one we use often.

There is a word for this.

Not a diagnosis. Not just a vibe. Not a self-help term or a trending hashtag.

It’s a concept from sociology—over a century old, but chillingly resonant now.

Anomie.

It names what happens when the bonds that hold a society together begin to fray—not just its laws or its leaders, but its shared sense of meaning, trust, and direction. When people no longer feel connected to one another, or to the structures that govern their lives. When norms dissolve, expectations crumble, and the thread of coherence goes slack.

Anomie isn’t just personal despair. It’s a collective unraveling.

Durkheim’s Anomie: The Name for Disintegration

What is Anomie?

Anomie is the word Émile Durkheim used to describe what happens when a society loses its grip on the shared norms and values that give it coherence. It literally means without norms—from the Greek a- (without) and nomos (law or order). But Durkheim wasn’t talking only about laws. He was naming something deeper: the invisible agreements that shape how people live together, make meaning, and locate themselves in the world.

In an anomic state, those agreements begin to dissolve. People no longer know what to expect from life, or from each other. The lines between right and wrong, success and failure, belonging and isolation all start to blur. The result isn’t always chaos in the streets—it’s often something quieter and more insidious: disorientation, drift, a creeping sense of unreality.

Durkheim first wrote about anomie in the context of rapid industrialization, when traditional social structures were breaking down and nothing stable had emerged to replace them. He believed that without strong social bonds—between individuals and communities, between effort and reward—people would begin to suffer not only materially but existentially.

Anomie, in his view, wasn’t a mental illness. It was a social illness—one that manifests in individual lives, but originates in systemic rupture.¹

Historical Context

Durkheim coined the term anomie at the end of the 19th century, as Europe was convulsing with transformation. The Industrial Revolution had upended centuries of agrarian life. People were moving en masse from rural villages to urban centers, trading inherited roles for factory schedules, communal ties for wage labor, and ritual for routine. What had once been stable—even if stifling—was now in flux.

Traditional institutions, like the church, the extended family, and the village, no longer held the same power to define what a good life looked like. In their place emerged markets, cities, and a new form of social mobility that promised opportunity—but offered no guarantees.

Durkheim wasn’t nostalgic for feudalism, but he was acutely aware of the psychological cost of rapid social change. He believed that when social structures shift too quickly, people lose the coordinates that once helped them navigate life. What was once obvious—what to believe, how to behave, what counted as success—becomes uncertain. The result is not just confusion, but a kind of spiritual and moral weightlessness.

This wasn’t a fringe idea. Durkheim considered anomie central to understanding rising suicide rates, labor unrest, and the deep unease of modernity itself. ² He saw that when people were cut off from stable roles and relationships, it wasn’t just their income that suffered—it was their sense of purpose and belonging.

The parallels to our own era are impossible to ignore. But before we jump ahead, it’s worth sitting with what Durkheim saw: that the root of anomie isn’t chaos—it’s disconnection.

What Does Anomie Look Like?

Durkheim believed that the effects of anomie weren’t just intellectual or moral—they were visceral. When people lose their sense of place in the world, their suffering often shows up in deeply personal ways: rising suicide rates, chronic loneliness, emotional numbness, and the turn toward self-destructive behaviors.

He observed that when the norms connecting effort to reward begin to dissolve, when there’s no clear path to meaning or belonging, despair follows. People become unmoored. They withdraw. Some lash out. Others collapse inward. In Suicide, Durkheim argued that even the most private decisions—like taking one’s own life—can be traced to systemic disconnection and societal breakdown.³

Today, the symptoms of anomie are all around us.

Loneliness is an epidemic. Young people report historic levels of anxiety and hopelessness. Suicide rates continue to climb, especially among marginalized groups. Substance use has surged. Overdose deaths are often framed as public health failures, but they are just as much evidence of social collapse. These are not isolated tragedies. They are signals.

At the same time, many people retreat from uncertainty by grasping for absolutes: conspiracy theories, fundamentalist ideologies, identity-based purity tests. In the face of a reality that feels chaotic and untrustworthy, extremism begins to look like clarity. Cults of certainty rise where trust in institutions falls. Fantasy offers refuge where community once offered care.

Durkheim warned us. Anomie isn’t about crime or chaos in the streets. It’s about the quiet corrosion of meaning.

It Isn’t You. Anomie is a Systemic Condition

It’s tempting to read all of this—despair, isolation, burnout—as personal dysfunction. To assume we’ve just become more fragile, or that mental health has mysteriously collapsed on a mass scale. But Durkheim insisted otherwise: the anguish we feel in times of anomie is not primarily a symptom of individual weakness. It is a response to a society that has lost its coherence.

Anomie, in Durkheim’s view, was not reducible to depression, even if it looked like it from the outside. He argued that when people feel aimless, overwhelmed, or unmotivated, it is often because the social fabric around them has frayed to the point of uselessness. The norms that once structured life—what to expect, how to succeed, what’s worth striving for—no longer function. In a system like that, distress is not an illness. It’s a mirror.

This doesn’t mean that mental illness isn’t real, or that everyone’s struggle is the same. But it does mean we cannot treat despair as a purely personal problem. If the world feels unlivable to so many people at once, the problem is not only in our minds. It is in the conditions we’re being asked to survive in.

Durkheim’s insight still holds: the suffering we carry inside us is often a rational response to a world that has stopped making sense. And when that world fails to offer clarity, belonging, or purpose, people don’t just suffer—they disengage. They shut down, check out, or look for meaning elsewhere.

To pathologize that is to miss the point.

To understand it is the first step toward repair.

Tocqueville’s Warning: The Fragile Thread of Civic Life

Tocqueville Admired Early American Civic Strength

When Alexis de Tocqueville traveled through the United States in the early 1830s, he wasn’t just observing a young democracy—he was witnessing a social ecosystem unlike anything he’d seen in Europe. What struck him wasn’t just America’s laws or its Constitution. It was the way ordinary people showed up for each other.

He marveled at the sheer density of civic life: town halls packed with debate, neighbors organizing schools and fire brigades, voluntary associations springing up for every imaginable cause. Mutual aid societies, agricultural clubs, religious fellowships, and abolitionist groups all pulsed with energy. Americans, he wrote, seemed to instinctively form associations wherever there was a need—and through those associations, they practiced democracy daily. ⁴

To Tocqueville, this habit of civic engagement was more than just admirable—it was essential. He believed that democratic institutions alone weren’t enough to hold a society together. What mattered just as much, if not more, was the fabric of communal participation: the relationships people built, the trust they sustained, and the norms they co-created through shared, face-to-face life.

In this regard, early America was fertile ground. Tocqueville saw in it a kind of moral counterweight to the isolating tendencies of modern life. While Europe’s revolutions were often top-down and bloody, he saw in America a slower, quieter revolution—one rooted in cooperation, trust, and small-scale self-governance.

The town meeting was not just a political structure. It was, in Tocqueville’s eyes, a training ground for freedom.

What Did Tocqueville Fear for America?

For all his admiration of American civic life, Tocqueville saw storm clouds on the horizon.

He worried that the very conditions that made democracy possible—freedom of choice, personal autonomy, mobility—might also give rise to its greatest internal threat: a deep and growing individualism that would slowly dissolve the social fabric from within.

Tocqueville didn’t use the word selfishness—that wasn’t quite it. What he feared was something subtler and more corrosive: the tendency of people in democratic societies to withdraw into private life, to focus on personal concerns while retreating from the shared labor of community. As people became more focused on their own families, fortunes, and freedoms, he warned, they would lose the habit of looking outward—toward neighbors, toward collective projects, toward the long, slow work of mutual care.

This shift wouldn’t happen all at once. It would unfold quietly, as people stopped joining associations, stopped attending meetings, stopped believing that civic participation made any real difference. And as that withdrawal took root, democracy would begin to hollow out—not from the top down, but from the inside out.

In Tocqueville’s vision, the danger wasn’t dictatorship—it was disconnection. The state wouldn’t need to seize power if the people simply stopped exercising it. And in that vacuum, he feared, more centralized and impersonal systems would emerge: bureaucracies, markets, technocracies—all efficient, none accountable. The citizen would become a consumer. The town hall would be replaced by the ballot box—and the ballot box, eventually, by apathy.

Without the daily practice of building shared life, he warned, freedom would become little more than a slogan.

And democracy, a shell.

The “Tyranny of the Majority” and the Rise of Algorithmic Pressure Today

One of Tocqueville’s most unsettling insights was that democratic societies might not need authoritarian rulers to silence dissent—because the majority could do it themselves.

He called it the tyranny of the majority: the way public opinion, once dominant, could become a kind of invisible coercion, punishing those who think or live differently. This tyranny wouldn’t show up as censorship or police raids. It would manifest through social shame, ostracism, and moral pressure. People would internalize the norms of the majority, and those who resisted would be pushed to the margins—not by law, but by culture.

In the 1830s, that idea was already provocative. In 2025, it feels prophetic.

Because now, we don’t just face the tyranny of the majority—we face the tyranny of the algorithmically amplified majority, or what looks like one. Social media doesn’t just reflect public opinion; it reshapes it, optimizing for outrage, visibility, and conformity. Platforms don’t show you the quiet nuance or the thoughtful dissent. They show you what will provoke, polarize, and perform. They reward alignment and punish ambiguity.

Under this system, we learn quickly what kinds of speech get likes and what gets shunned. What identities are affirmed and what questions are labeled suspicious. Even in progressive spaces, people are often afraid to speak honestly—not because of state repression, but because of the accelerating speed of judgment. You can be exiled for stepping outside the current consensus—even if the consensus is constantly shifting.

Tocqueville feared that in a democracy, people would stop thinking freely for fear of offending the crowd.

What he couldn’t have predicted was that the crowd would be sorted, stacked, and served to each of us in a hyper-personalized feed—a million private majorities, each demanding allegiance.

What Would Tocqueville Say if He Could See Us Now?

Probably: “You’ve stopped practicing democracy.”

If Tocqueville were somehow dropped into the United States today, he might be dazzled at first. The technology, the constitutional endurance, the formal right to vote—it would all look like a triumph of democratic evolution.

But it wouldn’t take him long to see the hollowness beneath the surface.

Where are the town halls? The neighborhood assemblies? The cross-class associations built not just around identity, but around action? Where are the daily rituals that train ordinary people to speak, listen, compromise, and lead?

He would see a country where democratic institutions still technically exist, but where the habits of democracy have atrophied. Where people vote every few years—if they vote at all—but rarely organize, deliberate, or build anything together between elections. Where civic engagement has been replaced by partisan spectacle, community by consumption, and participation by performance.

He might look around and say, simply:

“You’ve stopped practicing democracy.”

Because to Tocqueville, democracy was never just a set of procedures. It was a way of life—messy, slow, deeply relational. It required neighbors knowing each other. People taking responsibility for their communities. A willingness to wrestle with difference instead of canceling it, to argue with integrity instead of retreating in silence.

He would recognize the symptoms of its absence not just in our politics, but in our loneliness, our fatigue, and our disconnection. And he would warn—again—that democracy cannot survive on structure alone.

It must be lived.

Robert Putnam’s Diagnosis: The Collapse of Social Capital

Bowling Alone and the Empirical Cliff

If Tocqueville gave us a warning and Durkheim gave us a theory, Robert Putnam gave us the data.

In his landmark 2000 book Bowling Alone, Putnam documented what he called the collapse of social capital in the United States—the slow erosion of the relationships, networks, and shared activities that once formed the backbone of American civic life.⁵ His research revealed what many had sensed but struggled to articulate: that over the last half-century, Americans had become profoundly less connected to each other, and the decline wasn’t anecdotal. It was measurable.

The numbers were staggering. Participation in local organizations—PTAs, neighborhood associations, Lions Clubs, and rotary groups—had plummeted. Union membership fell. Church attendance dropped sharply. Fewer people hosted or attended dinner parties. Volunteering declined. Even seemingly innocuous social pastimes like playing cards with friends or having people over for coffee became statistically rare.

And then there was Putnam’s now-iconic metaphor:

Americans were still bowling—but they were bowling alone.

In other words, the activity survived, but the togetherness did not.

These weren’t just cultural shifts. Putnam showed that declining social capital had tangible consequences: lower trust in institutions, weakened democratic participation, and a rising sense of dislocation. People were voting less, trusting each other less, and engaging with their communities less—and they were feeling the effects in everything from mental health to local governance.

What Durkheim called anomie, Putnam translated into numbers and graphs. What Tocqueville called the art of association, Putnam showed was in freefall.

The Link to Rising Distrust and Civic Withdrawal

As social capital declined, Putnam observed, something else crept in to take its place: distrust.

It didn’t happen overnight. It followed the curve of disconnection. As people stopped joining, gathering, and sharing space, they began to lose the reflex of belief in one another. Not just trust in government, but trust in neighbors, coworkers, local institutions—even in the idea that we’re all part of something worth caring about together.

When people no longer feel embedded in a web of relationships, their sense of obligation to the common good begins to fade. Why invest in a community you don’t feel connected to? Why vote if you don’t think it matters? Why speak up at the school board meeting if no one listens, and everyone is already shouting?

Putnam showed that civic withdrawal is both a symptom and a cause of mistrust. As we disengage from public life, institutions become less responsive—less democratic—and people feel even more alienated. The feedback loop deepens. Fewer people participate, which makes the system weaker, which makes participation feel more futile. And so on.

This spiral doesn’t just affect politics. It affects health outcomes, education, disaster response, and neighborhood safety. Communities with high social capital are more resilient in every measurable way. But when that capital dries up, people start to live like strangers—not just to each other, but to the very idea of society.

It’s no wonder that conspiracy theories, political cynicism, and fatalism flourish in that vacuum.

When people stop showing up for one another, it becomes easier to believe no one ever will.

His Theory: When We Stop Investing in Each Other, We Lose Our Democratic Immune System

Putnam’s core argument was never just about bowling leagues or church potlucks. It was about infrastructure—not the kind made of roads and bridges, but the invisible systems of trust, care, and cooperation that keep a democracy alive.

In healthy societies, people participate. They vote, yes—but they also join, volunteer, help, listen, and gather. These habits of connection are what Putnam called the “schools of democracy.” It’s in local associations and community networks that people learn how to deliberate, compromise, lead, and trust across difference. These small acts aren’t trivial—they’re how we build the capacity to navigate larger crises together.

When people stop investing in one another, those democratic muscles atrophy. The result isn’t always immediate collapse—it’s something more like an immune deficiency. The body of society still stands, but its ability to respond to stress is weakened. Division spreads more easily. Authoritarian ideas gain traction. Institutions become brittle. Cynicism hardens.

It’s a slow erosion, not a sudden disaster. But by the time a true crisis hits—a contested election, a pandemic, a climate catastrophe—the system can no longer protect itself. Not because the Constitution failed, but because the people no longer trust each other enough to act collectively.

In this sense, Putnam didn’t just measure decline—he mapped out how democracies decay from within.

And he showed that the damage begins not in Washington, but in neighborhoods. In how we treat one another.

In what we choose to build—or let unravel.

Tocqueville warned that democracy depends on shared life. Durkheim gave language to the despair that sets in when shared life breaks down. And Putnam showed that this breakdown wasn’t theoretical—it was already well underway. The decline of social capital wasn’t just a cultural shift. It was a slow collapse of the structures that keep us connected, engaged, and resilient. By the time the next great crisis arrived, we were already living with the symptoms of anomie—whether we knew its name or not.

2020 and After: The Anomie Accelerator

The Pandemic Broke Social Ties That Were Already Fraying

By the time COVID-19 arrived, the fabric of American civic life was already worn thin. The bonds that once held communities together had been quietly fraying for decades. The pandemic didn’t start the unraveling—but it ripped the thread clean through.

Lockdowns isolated us in ways few had ever experienced. Offices, schools, churches, libraries, gyms—what sociologists call “third places,” the public and semi-public spaces where we casually encounter others—suddenly disappeared. Gatherings were canceled. Doors were closed. And what replaced them was cold and strained: Zoom calls that left us depleted, social distancing that quickly became social erasure.

Even brief, informal contact—the kind that builds familiarity and trust over time—vanished. We no longer bumped into neighbors or lingered in checkout lines or made small talk at the bus stop. The rituals of daily life that sustained social capital were stripped away, and for many people, they haven’t returned.

And underneath it all: fear, suspicion, and grief.

We grieved loved ones, lost opportunities, vanished milestones. We feared the air itself, and each other’s breath. Every interaction became a potential threat. People became nervous, withdrawn, vigilant—not just about the virus, but about social signals, political cues, and unspoken rules that shifted faster than anyone could keep up with.

These were not temporary inconveniences. They were deep psychic and communal wounds, inflicted on a society already weakened by disconnection. The result wasn’t just loneliness—it was a loss of orientation, a breakdown of social rhythm and shared presence.

For many, the pandemic didn’t only isolate us—it dislocated us.

And we haven’t really found our way back.

No One Will Protect You If It Isn’t Convenient

For me, the pandemic didn’t bring isolation—it brought exposure. I had to rent a room because I live in a minivan, and the public spaces I relied on—parks, vault toilets, gyms—were suddenly off-limits. I thought an apartment would keep me safer. But the people I lived with didn’t believe COVID was real. They said I looked fine. They didn’t notice when I lay on the floor of my room for three days, convinced I was dying. I’d caught the virus from one of their out-of-town guests.

While I flunked out of school and lost my health, they kept inviting people over for board games and sex parties. Another time, someone flew in from Spain to “quarantine” at our place before seeing their family. No one asked if I was okay. No one changed their behavior. And when my body started to break down from indoor living, they moved me from room to room like I was furniture.

I’ve had COVID three times now—all because other people decided my safety was less important than their convenience.

The pandemic didn’t just leave me alienated. It taught me something:

That no one would protect me if it costs their comfort or convenience.

People Didn’t Come All the Way Back

The lockdowns eventually lifted. The signs changed from “closed until further notice” to “now open.” Offices reopened. Planes filled. Restaurants hummed again.

But something didn’t come back with us.

We returned to commerce—but not to connection. The rituals of spending resumed. But the rituals of belonging—potlucks, playdates, drop-in visits, late-night conversations in folding chairs—remained fractured, or vanished altogether.

Some people never resumed their old lives. Others tried, but found the spark had gone out of the group text, the gathering, the friendship. What had once felt natural now felt effortful. And many simply stopped trying. The muscle of community had atrophied. The grooves of togetherness had been overwritten by isolation, suspicion, or exhaustion.

We told ourselves the pandemic had ended. But for many, the deeper rupture—the social rupture—never healed.

It’s not just that we stopped showing up. It’s that we stopped expecting others to show up, too.

We learned to get by without each other.

And that may be the most dangerous lesson of all.

Political Chaos Amplified the Breakdown

Into the void left by fractured communities, something darker poured in.

As people drifted apart and institutions lost credibility, political chaos surged forward to fill the space. What might have been a moment for collective rebuilding instead became a battleground. In the absence of trust, there was suspicion. In the absence of shared truth, there were conspiracy theories. In the absence of belonging, there were factions. And in the absence of public meaning, there was rage.

Polarization deepened into mutual incomprehension. Neighbors became strangers. Families fractured over masks, vaccines, elections, pronouns. Facts became optional, alliances hardened, and every interaction threatened to become ideological. What began as civic disengagement curdled into civic hostility—not just apathy, but active contempt.

And beneath it all: violence, or the threat of it, lurking in the margins. School board meetings filled with shouting. Statehouses filled with armed protesters. A presidential debate that ended with a sitting president telling a paramilitary group to “stand back and stand by.” And, eventually, a mob storming the Capitol, chanting for executions.

Durkheim would have recognized the symptoms. Tocqueville would have seen the consequences. And Putnam might have called it the final stage of the spiral: when social disconnection becomes so complete that democracy itself begins to feel like an illusion.

What we were experiencing wasn’t just political instability. It was the emotional aftermath of collective abandonment. A society built to reward individualism had left people isolated—and now, that isolation had turned volatile.

Economics, the J-Curve, and the Looming Crisis

James C. Davies’s J-Curve Theory of Revolution

In 1962, political scientist James C. Davies proposed a theory to explain when revolutions are most likely to erupt. His insight was simple but unsettling: people don’t revolt when they are at their lowest point. They revolt when they’ve begun to climb out of hardship—only to be thrown suddenly, violently backward.

Davies called it the J-Curve—a graph where expectations rise over time, and then plunge downward in a sharp, destabilizing collapse. The deeper the plunge, the more explosive the reaction. It’s not just suffering that triggers unrest—it’s the shock of disappointment, the psychological whiplash of hope turning into betrayal.⁶

Historically, this pattern shows up again and again. The French Revolution didn’t happen at the peak of starvation—it came after growing prosperity, Enlightenment optimism, and a taste of political reform. The Russian Revolution followed a period of rapid modernization. The Arab Spring came on the heels of increasing education, internet access, and rising youth expectations. The uprisings weren’t born of stagnation alone—they were sparked when progress seemed suddenly, brutally reversed.

The J-curve theory tells us that social order doesn’t collapse just because people are poor. It collapses when people believe things were getting better—and then are confronted with the realization that they were wrong, or that the system was never going to deliver on its promise.

The revolt begins at the breaking point between optimism and despair.

Today’s Curve: From Rising Expectations to Sharp Disillusionment

For much of the 2010s, it seemed—at least on the surface—that the United States was on an upward curve. The economy had begun to recover from the 2008 financial crisis. Real GDP grew steadily, averaging about 2.3% annually between 2010 and 2019⁷, and unemployment dropped from a post-recession high of 10% in 2009 to below 5% by the end of the Obama administration.⁸ During that same period, a national conversation about equity and inclusion gained ground. Diversity initiatives spread through universities, corporations, and federal agencies—including Executive Order 13583, which directed the U.S. government to promote a coordinated approach to diversity and inclusion across the public sector⁹.

There was a sense—however tentative—that things might be getting better. Then came the crash.

The COVID-19 pandemic was more than a public health crisis. It was a massive disruption of economic, social, and psychological life. Supply chains collapsed. Entire industries stalled. Unemployment spiked. Inflation surged to levels not seen in forty years, reaching 7.0% in 2021 and remaining high through 2022.¹⁰ Simultaneously, the climate crisis intensified, bringing more frequent extreme weather events, rising insurance costs, and growing anxiety over food and water security.¹¹

This sharp reversal—from rising expectations to cascading uncertainty—tracks precisely with what James C. Davies warned about. It wasn’t just suffering that unsettled people. It was the collapse of a narrative they had just begun to believe in: that maybe, finally, things were improving. When that fragile hope snapped, disillusionment filled the gap. And in that disillusionment, anger, paranoia, and polarization flourished.

The Recovery That Wasn’t: J-Curve After J-Curve

By 2023, many people were cautiously beginning to believe in recovery. Pandemic disruptions were fading. Supply chains were stabilizing. Grocery store shelves were mostly full again. Gas prices, though still volatile, had cooled from their peaks. Inflation was finally slowing, and headlines talked about a “soft landing.”

There was still grief, still debt, still burnout—but there was also a flicker of hope: that maybe we were through the worst of it. That we could begin rebuilding.

And then came another plunge.

In early 2024, new waves of economic instability were triggered—not by a virus this time, but by politics. Tariff threats, global trade disruption, and retaliatory economic policies sent markets lurching. Prices for basics like eggs, lumber, and used cars spiked again. Fear returned. Investment froze. Talk of recession re-emerged, now layered with fears of supply shortages, political interference, and global conflict.

What James C. Davies theorized as a single curve has begun to feel, in practice, like a series of J-curves, one after another. We rise just enough to begin to hope—then plunge back into uncertainty. The cycles of expectation and betrayal are accelerating. Each wave erodes trust further. Each crash deepens fatigue.

We are not experiencing a stable decline or a linear crisis.

We are riding a rollercoaster of collective disappointment.

And with every loop, the safety bar feels a little looser.

Widespread Fear of Civil War or Authoritarianism Isn’t Paranoia—It’s Pattern Recognition

The ambient fear so many people carry now—that democracy may collapse, that civil war might break out, that authoritarianism is not just possible but already underway—can sound, on the surface, like panic. Like the fevered edge of political discourse.

But it isn’t paranoia.

It’s pattern recognition.

History teaches us that no society is immune to collapse. And it shows us what collapse often looks like before it arrives: widening inequality, eroding trust, factional violence, institutional fragility, scapegoating of marginalized groups, increasing surveillance, and the normalization of political cruelty.

We are not imagining these things. We are witnessing them.

We’ve seen a sitting president attempt to overturn an election. We’ve seen books banned, protest criminalized, and entire demographics targeted as existential threats. We’ve seen vigilante violence applauded, and the language of extermination creep into political speech. We’ve seen pandemic aid rolled back while billionaires gain wealth, and basic survival reframed as personal failure.

What Davies called the “revolutionary situation” doesn’t begin with marching bands and manifestos. It begins when people lose faith in the future and feel they have nothing left to lose.

We are surrounded by people who feel that way right now—on the left, on the right, and in the vast, frightened middle.

The language of collapse has entered the mainstream not because people are overreacting, but because they’re paying attention.

They are watching the curve rise.

And they are bracing for the next drop.

Breathing Space: Before We Turn

It would be easy to stop here.

To say: this is the end, the unraveling, the long slide down. To let the fear harden into fatalism. To declare the experiment failed.

But that’s not the story we’re telling—not yet.

Because if anomie is a social illness, then it means we’re not doomed. We’re sick. And sick things can be treated. Systems can be repaired. Threads can be rewoven—if we understand the diagnosis, and if we remember how to care for one another.

The question isn’t just what’s breaking.

It’s what still holds.

And that’s where we go next.

So What Do We Do? The Antidote to Anomie

Community as the counterspell

Anomie feeds on disconnection. It grows where people are isolated, unseen, and unsure that they matter. Its cure, then, cannot be individual. It cannot be found in better habits or more discipline or another mindfulness app.

The antidote to anomie is community.

Not performative unity. Not empty slogans about healing. Not a kumbaya fantasy where everyone agrees. What we need is real, tangible connection—the kind that grows slowly, awkwardly, messily. The kind that can survive disagreement. The kind that makes room for people who are grieving, angry, exhausted, or unsure how to be in a room with others again.

We don’t need to agree on everything.

We need to show up.

Not just once. Not just when it’s convenient. But over time, with care, with attention, with the humility to ask “How can I help?” and the courage to answer “I need you.”

Community doesn’t mean consensus. It means accountability. Witnessing. Mutual investment. It means hosting the meeting, cooking the meal, checking on the neighbor, holding the sign, offering the ride. It means organizing the union, tending the garden, building the group chat that turns into a support network that turns into something that can actually weather a storm.

It’s not dramatic. It’s not efficient. It’s not even always fun.

But it’s how we remember we exist—not as individuals floating through crisis, but as people tethered to each other by choice.

Small-Scale Social Fabric Matters

It’s easy to believe the problems we’re facing are too big to touch. The climate is collapsing. Democracy is backsliding. Billionaires own the infrastructure. What could a garden or a book club possibly do?

But this is where social repair begins—not at the scale of the nation-state, but at the scale of human beings in rooms together.

A community garden doesn’t stop capitalism. But it brings people into shared rhythm with the land and with each other. It creates space for conversation, for nourishment, for presence. A mutual aid network can’t replace a safety net, but it can keep someone from losing their home—or their hope. A book club doesn’t pass legislation, but it builds trust, shared language, and the kind of sustained attention that democracy requires.

Public schools. Disability justice collectives. Religious and spiritual circles. Makerspaces. Scout troops. Choirs. Block parties. Grief groups. Protest camps. Hobby clubs.

These are not distractions from resistance. They are resistance.

Because they restore the thing anomie corrodes: the belief that our lives are interwoven, that we are not meant to carry the weight alone.

In the aftermath of disconnection, these spaces offer ritual, repetition, and relationship. They ask us to return, to show up even when it’s awkward or inconvenient, to become part of something that lasts longer than a single crisis cycle.

Small-scale community is not a backup plan.

It is the seedbed of every durable movement.

Not Just Self-Care, but Interdependence

In a culture obsessed with binaries, we are taught that we must choose between being independent or being dependent. To stand alone, strong and self-sufficient—or to fall into need, weakness, and shame. These are the only options offered.

But there is a third way. And it is older, wiser, and more sustainable than either extreme.

Interdependence.

Interdependence says: we are not whole without each other.

It says: your wellbeing is bound up in mine.

It doesn’t mean giving up autonomy. It means recognizing that autonomy was never meant to be exercised in a vacuum.

In the wake of burnout, disconnection, and capitalist survivalism, we’re told that the answer is better self-care. Rest more. Set boundaries. Breathe. These things matter. But they are not enough—not in a world where the deepest wounds are social.

Anomie cannot be meditated away. It must be mended—through relationship, through repair, through reciprocal care.

The opposite of anomie isn’t control.

It’s solidarity.

Not the kind of solidarity that shows up once and leaves, but the kind that stays. The kind that cooks meals, folds chairs, answers late-night texts, and comes back the next day. The kind that lets us say “I can’t do this alone” without shame—and hear “You don’t have to” without hesitation.

We cannot rebuild trust alone. We cannot recover a sense of meaning alone.

And we cannot survive what’s coming alone.

Interdependence is not weakness. It is our only way forward.

A Personal Turn

Living the Antidote in Exile

For over a decade, I’ve lived in a minivan.

Not because I gave up, but because I refused to break. Traditional housing, for me, meant sensory overload, unsafe roommates, insufficient light to manage my circadian rhythm disorder, and overall compromised health. Living in my van allowed me to stay connected to what my body actually needs: sunlight, rhythm, solitude, and air.

But it wasn’t isolation.

What I’ve built, often on the margins, is community without architecture. I’ve formed relationships in parking lots and libraries, laundromats and forest clearings. I’ve facilitated autistic peer support groups on Zoom from the front seat of my van. I’ve built mutual aid networks from places others wouldn’t consider home.

There’s no front porch. But there are ritual check-ins, shared stories, and people who notice when I’m gone.

When the pandemic came, I tried to be smart and safe: I rented a room. But the space wasn’t safe. That experience didn’t just make me sick. It made the truth impossible to ignore:

No one will protect you if it isn’t convenient for them.

But I also learned something else.

That safety doesn’t come from walls. It comes from witnessing. From the people who do check in, show up, and help you stitch a little meaning back into your day. From those who say, “You still matter,” even when the world says you don’t. From those who allow you to stitch meaning into their day. From those who matter to me.

The antidote to anomie isn’t comfort. It’s recognition.

It’s knowing you’re not invisible. That someone, somewhere, still sees you.

That someone, somewhere, still stays.

The Choice to Survive Through Connection, Not Alienation

It would have been easy to pull away.

After so many failures of care—after being ignored, dismissed, pushed out, or put at risk—it would have made sense to give up on other people. To choose isolation. To disappear.

But I didn’t.

I chose to stay in the web of community, even if I had to build and re-build it from scratch. I chose to keep showing up—for my people, for my cohorts, for strangers who felt as lost as I did. I chose to believe that connection is still possible, even if it doesn’t look like what we were told it should. Even if it comes without sidewalks or front doors.

I’ve seen what happens when people remember how to care for each other.

I’ve seen disabled folks redistribute emergency funds in hours.

I’ve seen trans people find housing through group chats and mutual aid.

I’ve seen Autistic adults come alive in peer-led circles after a lifetime of being pathologized.

None of it’s easy. All of it’s fragile.

But it’s real.

And it’s worth choosing.

I don’t believe the antidote to anomie is something we’ll legislate or download. I believe it’s something we choose, again and again—through fatigue, through fear, through the ache of disillusionment.

Not because we’re sure it’ll work.

But because we refuse to vanish.

Remembering Who We Are

Reframe the Fear

It’s not just you.

The exhaustion. The disorientation. The sense that something is wrong but you can’t name it, can’t fix it, can’t escape it. The fear that the world is crumbling—or that it already has, and you missed the moment it snapped.

That feeling is real. And it’s not a personal failing.

It’s the ache of a fraying social fabric.

We were never meant to live this way: isolated, overstimulated, under-supported, and saturated with fear. We were never meant to navigate pandemics, fascism, climate collapse, and economic precarity alone, cut off from one another, taught to see connection as weakness or threat.

What you’re feeling isn’t just burnout. It isn’t just anxiety. It isn’t even just political despair.

It’s anomie.

And once you have a name for it, you can start to see it not as a fog in your own mind, but as a systemic rupture. A wound we’re all walking around with. A wound that can be seen, understood, and—if not healed entirely—held together.

This fear doesn’t have to lead to collapse.

It can lead to recognition.

To remembrance.

And to the radical act of reaching for one another in the dark.

A Call to Gentle, Persistent Action

You don’t have to fix everything.

You don’t have to carry it all.

You don’t have to save the world.

Just don’t let the thread slip through your fingers.

The social fabric is tattered, yes. But it’s not gone. It still exists in potlucks and protests, in bike repair collectives and porch conversations, in small group texts that turn into lifelines, in the way someone brings soup as a wordless way of asking if you’re okay.

You don’t need to create something massive.

You just need to continue. Show up. Reach out. Check in. Make space. Tend the fire of whatever tiny community still warms your hands.

Gentle, persistent action is not weakness. It’s what survival looks like in an unraveling world. It’s what builds back trust—not in institutions alone, but in each other. It’s what reminds us that belonging is not a gift handed down from the powerful, but a practice we can reclaim from the ground up.

Every time you choose to show up—especially when it’s hard, especially when it’s imperfect—you’re helping stitch the world back together.

One thread. One gesture. One gathering at a time.

Final Image

Picture a small circle of people sitting around a fire.

There’s food being passed, gently. A hand reaches to refill another’s cup. Someone is laughing. Someone is crying. Someone is silent, just listening. No one is performing. No one is being fixed. They’re just… there. Together. Present.

Behind them, the world is still burning. The headlines still scream. The systems are still cracking.

But in this one small clearing, there is warmth. There is care. There is a thread being handed from one hand to the next—looped, knotted, passed again. Not to bind, but to hold. Not to control, but to remind.

This is what survives.

The circle.

The flame.

The quiet meal shared between people who choose not to let go of one another.

This is not the end of the story.

It’s the place where we begin again.

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FOOTNOTES

1. Durkheim, Émile. Suicide: A Study in Sociology. 1897. Translated by John A. Spaulding and George Simpson, Free Press, 1951.
   ↩︎
2. Durkheim, Émile. The Division of Labor in Society. 1893. Translated by W.D. Halls, Free Press, 1984.
   ↩︎
3. Durkheim, Émile. Suicide: A Study in Sociology. 1897. Translated by John A. Spaulding and George Simpson, Free Press, 1951. ↩︎
4. Tocqueville, Alexis de. Democracy in America. 1835. Translated by Harvey C. Mansfield and Delba Winthrop, University of Chicago Press, 2000. ↩︎
5. Putnam, Robert D. Bowling Alone: The Collapse and Revival of American Community. Simon & Schuster, 2000. ↩︎
6. Davies, James C. “Toward a Theory of Revolution.” American Sociological Review, vol. 27, no. 1, 1962, pp. 5–19. ↩︎
7. Center on Budget and Policy Priorities. “Tracking the Post-Great Recession Economy.” https://www.cbpp.org/research/economy/tracking-the-post-great-recession-economy ↩︎
8. Bureau of Labor Statistics. “Civilian Unemployment Rate.” U.S. Department of Labor, https://www.bls.gov/charts/employment-situation/civilian-unemployment-rate.htm. Accessed 20 Apr. 2025. ↩︎
9. Executive Order 13583. “Establishing a Coordinated Government-Wide Initiative to Promote Diversity and Inclusion.” August 18, 2011. ↩︎
10. Investopedia. “US Inflation Rate by Year.” https://www.investopedia.com/inflation-rate-by-year-7253832 ↩︎
11. U.S. Environmental Protection Agency. “Climate Change and Agriculture.” https://www.epa.gov/climateimpacts/climate-change-impacts-agriculture-and-food-supply ↩︎

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WORKS CITED

Bureau of Labor Statistics. “Civilian Unemployment Rate.” U.S. Department of Labor, https://www.bls.gov/charts/employment-situation/civilian-unemployment-rate.htm. Accessed 20 Apr. 2025.

Center on Budget and Policy Priorities. “Tracking the Post-Great Recession Economy.” https://www.cbpp.org/research/economy/tracking-the-post-great-recession-economy

Davies, James C. “Toward a Theory of Revolution.” American Sociological Review, vol. 27, no. 1, 1962, pp. 5–19.

Durkheim, Émile. The Division of Labor in Society. 1893. Translated by W.D. Halls, Free Press, 1984.

Durkheim, Émile. Suicide: A Study in Sociology. 1897. Translated by John A. Spaulding and George Simpson, Free Press, 1951.

Executive Order 13583. “Establishing a Coordinated Government-Wide Initiative to Promote Diversity and Inclusion.” August 18, 2011.

Investopedia. “US Inflation Rate by Year.” https://www.investopedia.com/inflation-rate-by-year-7253832

Putnam, Robert D. Bowling Alone: The Collapse and Revival of American Community. Simon & Schuster, 2000.

Tocqueville, Alexis de. Democracy in America. 1835. Translated by Harvey C. Mansfield and Delba Winthrop, University of Chicago Press, 2000.

U.S. Environmental Protection Agency. “Climate Change and Agriculture.” https://www.epa.gov/climateimpacts/climate-change-impacts-agriculture-and-food-supply

This essay is a rigorously sourced defense of autistic self-identification as a valid and necessary claim to identity, support, and inclusion. Drawing on disability justice frameworks and recent research, it examines how suspicion, diagnostic gatekeeping, and biased data practices work together to exclude the most marginalized Autists—from research, services, and community spaces.

Image description: A close-up photograph of three bright yellow dandelion flowers in full bloom, surrounded by jagged green leaves. Dandelions are resilient, beautiful, and impossible to suppress, making them a symbol of autistic self-identification: natural, valid, and thriving in defiance of attempts to uproot or gatekeep.

Index

• Introduction: Naming as Power
• The Disability Con: Suspicion as a Design Feature
• The Case for Self-Identification
• Research Gatekeeping: Trimming the Outliers
• Data Cleaning as a Tool of Erasure
• Diagnosis as a Gate, Not a Guarantee
• Toward Research and Access Justice
• Conclusion: Exclusion Is Not a Mistake

Introduction: Naming as Power

To name oneself autistic without a clinical diagnosis is not a mistake, a misunderstanding, or a phase. It is a political act. In a world where diagnosis functions as both gate and stamp of legitimacy, self-identification is an act of resistance—especially for those who have been systematically denied access to medical recognition. It challenges the authority of institutions to determine who is “real,” who is deserving, and who gets to belong.

Autistic self-identification is more than personal—it is structural. It is a way of claiming access to understanding, to community, and to the accommodations that make life livable. And when self-identified Autists are excluded—shut out of research studies, denied services, or dismissed in conversation—that exclusion is not incidental. It is built into the systems that manage legitimacy. It is exclusion by design.

This essay explores how that design operates: how suspicion is coded into disability discourse, how diagnostic gatekeeping upholds unjust hierarchies, and how research practices erase the very people most affected by systemic barriers. It draws from recent scholarship in disability studies, legal theory, and neurodiversity-affirming research to show that the fight over who “gets to be autistic” is not about semantics—it’s about power.

The Disability Con: Suspicion as a Design Feature

The suspicion that disabled people are faking it is not just a social attitude—it is a structural force. Legal scholar Doron Dorfman calls this phenomenon the “disability con”: a cultural myth that casts disabled people as potential frauds and accommodations as suspect perks rather than civil rights.¹

This suspicion doesn’t arise by accident. It’s reinforced by the very systems meant to protect disabled people—insurance policies that demand proof of suffering, benefits programs that scrutinize applicants, and access protocols that require endless documentation. It is designed to disbelieve. As Dorfman’s research shows, nearly 60% of Americans with disabilities report that others question the legitimacy of their disability when they request accommodations.²

Suspicion is more than interpersonal skepticism—it’s a form of social control. It narrows who is allowed to access support without shame or interrogation. It places the burden of legitimacy on disabled people themselves, forcing them to navigate a constant performance of believability. And it rewards those who conform to a familiar, institutional image of disability.

Autistic people are especially vulnerable to this dynamic. Autism is often invisible, and public understanding of it is riddled with stereotypes. When someone self-identifies as autistic—especially if they speak fluently, make eye contact, or lack a formal diagnosis—they are frequently met with disbelief. “You don’t look autistic.” “Everyone’s a little autistic.” “You’re just quirky.” This is the disability con in action: suspicion weaponized against anyone who doesn’t fit the mold.

For self-identified Autists, that suspicion is doubled. Not only are they subject to the usual disbelief directed at invisible disabilities, but they are also penalized for naming themselves. In a society where diagnosis has been framed as the only valid entry point to disability identity, self-identification is treated not as insight, but as overreach.

The result is a system in which disbelief is embedded—by policy, by gatekeeping practices, and by cultural habits of mind. Suspicion becomes the price of access. And for those who can’t afford to pay it, the doors stay closed.

The Case for Self-Identification

When autistic people name themselves without a formal diagnosis, it is not because they want shortcuts. It’s because the diagnostic pipeline is broken—and it was never built for everyone to begin with.

Accessing an autism diagnosis as an adult is notoriously difficult. The process can be expensive, time-consuming, and geographically limited. Many providers won’t evaluate adults at all, or require outdated, childhood-focused criteria that fail to account for late-discovered or multiply-marginalized Autists. For BIPOC, queer, trans, poor, and disabled people, these barriers compound. Research has shown that racism, sexism, transphobia, and clinician bias delay or prevent diagnosis altogether.³ One 2024 study notes that LGBTQ+ adults are especially likely to be left out of assessment pathways—and that those who are self-identified often arrive at that identity after long periods of invalidation and dismissal.⁴

These are not incidental gaps. They are structural exclusions, baked into the design of diagnostic systems that prioritize compliance, affluence, and “classic” presentations of autism. The result is a massive population of undiagnosed Autistic adults—many of whom are functionally and experientially autistic, but are rendered invisible in services, research, and policy.

In response, many turn to self-identification. Not as a second-best option, but as a meaningful, grounded recognition of who they are. Recent studies affirm this as a valid path. In one qualitative study of self-identified autistic women and gender-diverse adults, researchers found that self-identification was not only accurate to participants’ lived experience—it was often transformative. As the authors note, “Self-identifying was an empowering way of attaining a positive autistic identity outside of the deficit paradigm embedded within the diagnostic pathway.”⁵

This is crucial. The refusal to submit oneself to a flawed or inaccessible system is not a failure—it’s resistance. And it reflects a growing understanding that autism is not something granted by a clinician. It’s something known, embodied, and lived.

Research Gatekeeping: Trimming the Outliers

Autism research often claims to study “the spectrum”—but in practice, it narrows the field to those who have been officially diagnosed and can pass the entrance tests of institutional legitimacy. Self-identified autistics, no matter how closely their lives align with diagnostic criteria, are routinely excluded from research. Sometimes it’s explicit: participation is limited to those who can provide documentation. Other times it’s more subtle—recruitment from clinical populations only, or designs that filter out anyone with co-occurring disabilities, “incomplete” profiles, or divergent communication styles.

The result is a biased body of research that skews toward the most privileged and most easily measured. The Autists who are self-taught, self-knowing, or self-naming are left out—not because their experiences are irrelevant, but because their legitimacy has not been officially rubber-stamped.

This has consequences. When researchers build studies that exclude self-identified Autists, they’re not just shaping the dataset. They’re shaping the field. They’re determining who counts as autistic—who gets to represent the spectrum, influence findings, and appear in the literature that drives services, funding, and public understanding.

As one 2024 paper argues, “Self-identified autistic individuals provide valuable context and data for many of the social processes and preferences reported by autistic people.”⁶ Their exclusion doesn’t just hurt them—it distorts the science. It ensures that those most affected by diagnostic barriers remain unheard, uncounted, and unrepresented. It elevates conformity over complexity.

And it’s personal. For self-identified Autists, research exclusion is another form of erasure. They see their experiences mirrored in autistic communities. They find language and tools that help them thrive. But when it comes to contributing to the knowledge base, they’re told: you don’t count.

As I’ve written elsewhere: when researchers trim the outliers, that’s us they’re removing. The very people who don’t fit neatly into diagnostic systems are the ones most likely to be discarded in data collection. The people with the most insight into autism’s social construction, gendered expression, and intersectional reality—gone from the record.

This isn’t scientific rigor. It’s diagnostic hegemony—a power structure that treats the DSM as gatekeeper and pathologized compliance as proof. And it leaves the research landscape flatter, whiter, more medicalized, and less truthful than the autistic community it claims to represent.

Data Cleaning as a Tool of Erasure

Scientific research carries the illusion of neutrality—but the decisions researchers make about what counts as valid data are never neutral. They are shaped by design choices, and those choices often exclude the most marginalized Autistic people before analysis even begins.

Take survey data. If an autistic person skips a confusing or upsetting question, or exits the survey early due to fatigue or sensory overload, their response is often discarded as “incomplete.” In a major UK autism survey, over 450 such entries were removed from the dataset—not because they were inaccurate, but because they didn’t fit the format.⁷ As David Mery pointed out, this kind of data cleaning disproportionately affects Autistics, whose ways of engaging with surveys often differ from neurotypical norms.⁸ The result? The most sensitive, overwhelmed, or nonconforming voices are cut from the record—not because they aren’t real, but because they’re inconvenient to the method.

Or consider brain imaging studies. Many neuroimaging protocols require participants to remain perfectly still during scans—something that can be especially difficult for autistic children or adults. In one study, autistic children were nearly twice as likely to be excluded due to motion artifacts compared to their neurotypical peers.⁹ Once again, the outcome is a dataset that favors those who can pass as compliant.

And then there’s the language barrier. Non-speaking Autists or those with intellectual disabilities are often excluded from studies by default—not because they don’t have something to say, but because researchers haven’t designed methods that allow them to say it. As Ginny Russell observed, fewer than 2% of participants in autism studies are non-speaking, and less than 6% have intellectual disabilities.¹⁰ Yet these groups make up a substantial portion of the Autistic population. Their near-total absence from research isn’t an accident. It’s a methodological choice that reinforces ableist hierarchies of who is legible, who is credible, and who gets studied.

When we ask who is excluded from research, we must also ask: who gets to define what counts as usable data? And whose lives are considered too complex, too inconvenient, too incomplete to measure? The data we clean is often the truth we most need to understand.

Diagnosis as a Gate, Not a Guarantee

Diagnosis is often framed as a neutral gateway to services, support, and legitimacy. But in practice, it acts more like a gatekeeper—one that polices who is allowed to be seen as disabled, who gets access to resources, and who is deemed credible enough to speak.

Clinicians, schools, insurance companies, and research institutions all use diagnosis as a threshold. But that threshold is not equally accessible to all. It favors those who are white, verbal, cisgender, middle-class, and able to articulate their experiences in clinical language—especially when someone in authority, like a parent, teacher, or employer, advocates on their behalf. 

Even among the privileged, those who self-advocate are less likely to be believed than those whose needs are validated by third parties. Those who don’t fit the mold—because of race, gender, poverty, language, or support needs—are far more likely to be misdiagnosed, dismissed, or ignored entirely.¹¹

This isn’t just a matter of oversight. It’s a system functioning as designed. As disability legal scholar Natalie Chin writes, “The politics of exclusion are embedded in how we define disability, how we verify it, and who gets believed.”¹² Diagnosis is not just about whether someone meets a set of criteria—it’s about who has the resources, cultural fluency, and social position to be heard.

For multiply marginalized Autists—Black Autists, trans Autists, Autists with intellectual disabilities or complex medical needs—the pathway to diagnosis is often filled with invalidation. Some are told they’re “too high-functioning” to be autistic; others are told they’re “too impaired” to understand their own experience. Still others are told they’re just depressed, anxious, dramatic, or defiant. And some are never evaluated at all.

The power to diagnose is also the power to exclude. It determines not just who gets help, but who gets counted. When researchers or institutions require formal diagnosis for participation, they aren’t just filtering for clarity—they’re reproducing the same inequalities that made diagnosis inaccessible in the first place. The pipeline is leaky, and the leaks follow familiar fault lines: race, gender, poverty, disability.

Autistic self-identification exists, in part, because diagnosis has failed to account for us. It is not an end-run around medical authority—it’s a refusal to let that authority be the only arbiter of identity.

Toward Research and Access Justice

If autism research, services, and community spaces are meant to serve Autistic people, then they must include Autistic people—all Autistic people, not just those with diagnostic paperwork in hand. The exclusion of self-identified Autists from research studies, support programs, and advocacy coalitions is not just scientifically flawed. It is ethically indefensible.

As long as diagnosis remains inaccessible, biased, and unevenly distributed, insisting on it as a requirement for participation only reinforces the very disparities we claim to oppose. Self-identified Autists are often those most marginalized by the diagnostic process: queer and trans Autists, Autists of color, Autists with trauma histories, Autists without access to affirming healthcare. Denying them access to research, accommodations, or peer spaces doesn’t protect the integrity of autism work—it undermines it.

Recent scholarship is beginning to reflect this shift. A 2024 study urges, “Researchers and advocates should consider including self-identified autistic individuals in research and services,” noting that their perspectives are both valid and necessary.¹³ These individuals bring lived expertise, often honed through community engagement, self-education, and deep personal reflection. Their inclusion strengthens—not dilutes—the authenticity and diversity of autistic knowledge.

Critics sometimes worry that opening the door to self-identification will invite people to claim autism falsely, or “steal” accommodations they don’t deserve. But this fear misunderstands both the nature of disability and the reality of self-identification. Most Autists who self-identify do so after long reflection, intense research, and often a history of misdiagnosis or dismissal. They are not seeking unfair advantage—they are seeking belonging, understanding, and tools for survival. The real danger is not that someone undeserving might slip through the cracks. The real danger is that those who need support will continue to be shut out by systems more invested in gatekeeping than in care.

In access contexts, the same principles apply. Accommodations should be based on needs, not gatekeeping. If someone communicates that they are overstimulated, struggling to process information, or in need of alternative formats or timelines, the priority should be support—not suspicion. Requiring a formal diagnosis to access accessibility tools only delays help and punishes those already failed by systems.

And in community spaces, the stakes are perhaps most intimate. Many self-identified Autists turn to autistic peer groups for solidarity, safety, and understanding after years of erasure. Excluding them—explicitly or implicitly—harms people who have often already experienced profound disconnection. The principle of “nothing about us without us” must be expanded to say: nothing about us without all of us.

Justice means recognizing that the boundaries of who counts as autistic are not natural—they are constructed. And if they were built, they can be rebuilt.

Conclusion: Exclusion Is Not a Mistake

Autistic self-identification is not a loophole. It is not an error. It is not a threat to scientific integrity or community cohesion. It is a necessary response to exclusion that was built into the system—by design.

From suspicion rooted in the myth of the disability con, to diagnostic barriers shaped by bias and inaccessibility, to research methods that quietly discard the most marginalized—the pattern is clear. The exclusion of self-identified Autists is not an oversight. It is the result of policies, practices, and norms that were designed to control who gets to be recognized, who gets to speak, and who gets to be believed.

And yet, despite this, Autistic people continue to name themselves. To find one another. To build knowledge and culture and community in the gaps left by institutions. For many Autists, self-identification is not just valid—it is the only path available. It is a form of survival, of coherence, of truth-telling.

If we care about justice—for Autists, for disabled people, for anyone whose worth has been filtered through suspicion—then we must stop asking, “But do you have a diagnosis?” and start asking, “What do you need?” We must open research, services, and community spaces to all those who find themselves reflected in autistic experience, regardless of paperwork or professional approval.

Exclusion is not accidental. It is designed—and it can be dismantled.

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Feel free to share this essay with others—especially in spaces where autistic self-identification is questioned or misunderstood. You’re welcome to quote or cite it, and I hope it becomes part of a broader conversation about access, truth, and justice.

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Footnotes

1. Dorfman, Doron. “Fear of the Disability Con: Perceptions of Fraud and Special Rights Discourse.” Law & Society Review, vol. 53, no. 4, 2019, pp. 1051–1091.

2. Ibid., p. 1073.

3. Overton, Gillie L., et al. “Understanding the Self-identification of Autism in Adults: A Scoping Review.” Review Journal of Autism and Developmental Disorders, vol. 11, 2024, pp. 682–702.

4. Ardeleanu, Krista, et al. “Self-identification of autism: Why some autistic adults lack a clinical diagnosis and why this matters for inclusion.” Autism, 2024 (online ahead of print).

5. Friedman, Ariana, et al. “A qualitative exploration of the experiences of self-diagnosed autistic women and gender-diverse individuals who are not pursuing an autism diagnosis.” Neurodiversity, vol. 2, no. 1, 2024, pp. 38–50.

6. Ardeleanu, Krista, et al. “Self-identification of autism: Why some autistic adults lack a clinical diagnosis and why this matters for inclusion.” Autism, 2024 (online ahead of print).

7. Mery, David. “Does data cleaning disproportionately affect autistics?” Autism, vol. 22, no. 2, 2018, pp. 232–233.

8. Ibid.

9. Miceli, Molly C., et al. “Accounting for motion in resting-state fMRI: What part of the story are we missing?” NeuroImage, 2023.

10. Russell, Ginny. “Autistic people with intellectual disability often excluded in studies.” Spectrum / The Transmitter, 2019.

11. Overton, Gillie L., et al. “Understanding the Self-identification of Autism in Adults: A Scoping Review.” Review Journal of Autism and Developmental Disorders, vol. 11, 2024, pp. 682–702.

12. Chin, Natalie. “Unseen and Unheard: Reimagining Disability Justice in Legal Frameworks.” Disability Studies Quarterly, vol. 41, no. 3, 2021.

13. Ardeleanu, Krista, et al. “Self-identification of autism: Why some autistic adults lack a clinical diagnosis and why this matters for inclusion.” Autism, 2024 (online ahead of print).

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Works Cited

Ardeleanu, Krista, et al. “Self-identification of autism: Why some autistic adults lack a clinical diagnosis and why this matters for inclusion.” Autism, 2024 (online ahead of print).

Chin, Natalie. “Unseen and Unheard: Reimagining Disability Justice in Legal Frameworks.” Disability Studies Quarterly, vol. 41, no. 3, 2021.

Dorfman, Doron. “Fear of the Disability Con: Perceptions of Fraud and Special Rights Discourse.” Law & Society Review, vol. 53, no. 4, 2019, pp. 1051–1091.

Friedman, Ariana, et al. “A qualitative exploration of the experiences of self-diagnosed autistic women and gender-diverse individuals who are not pursuing an autism diagnosis.” Neurodiversity, vol. 2, no. 1, 2024, pp. 38–50.

Mery, David. “Does data cleaning disproportionately affect autistics?” Autism, vol. 22, no. 2, 2018, pp. 232–233.

Miceli, Molly C., et al. “Accounting for motion in resting-state fMRI: What part of the story are we missing?” NeuroImage, 2023.

Overton, Gillie L., et al. “Understanding the Self-identification of Autism in Adults: A Scoping Review.” Review Journal of Autism and Developmental Disorders, vol. 11, 2024, pp. 682–702.

Russell, Ginny. “Autistic people with intellectual disability often excluded in studies.” Spectrum / The Transmitter, 17 Oct. 2019. https://www.spectrumnews.org

In May 2024, the Biden administration issued a ruling affirming that gender dysphoria qualifies as a disability under Section 504 of the Rehabilitation Act. This was a vital step in ensuring that trans people—especially those facing discrimination in healthcare, education, and employment—could access the same legal protections that disabled people rely on.

But now, Texas and 16 other Republican-led states are suing to overturn this ruling. They claim that including gender dysphoria as a disability is an overreach. But let’s be clear: this lawsuit isn’t just about trans people. It’s an attempt to dismantle disability protections altogether.

As a multiply disabled, Autistic, and trans person, I rely on these protections to survive. If Texas wins this case, the consequences won’t stop with gender dysphoria. The very foundation of disability rights is at risk.

This Lawsuit is an Attack on Disability Rights, Not Just Trans Rights

At first glance, Texas v. Becerra might only look like another attempt to target trans people. But beneath the surface, this lawsuit is part of a much broader strategy to weaken the Rehabilitation Act.

Section 504 is one of the most important disability rights laws in the U.S. It prevents discrimination against all disabled people in federally funded programs—including public schools, hospitals, and workplaces. If this lawsuit succeeds, it could create a dangerous legal precedent, making it easier to strip protections from other disabled groups in the future.

Disability protections exist because disabled people face systemic barriers to participation in society. Trans people experience these same barriers when we are denied medical care, fired for transitioning, or refused basic accommodations like correct gender markers on IDs. If this lawsuit succeeds in removing gender dysphoria from disability protections, it won’t stop there. Other conditions—especially those that conservatives find politically inconvenient—could be next.

Trans and Disabled Rights Are Deeply Connected

Many trans people are also disabled. Whether it’s due to neurodivergence, chronic illness, mental health conditions, or the physical toll of discrimination, the overlap is significant. A 2022 study found that trans people have a rate of disability twice that of the general population.

For trans people without other disabilities, losing Section 504 protections would still be catastrophic. These protections ensure access to:

• Accommodations in workplaces and schools
• Non-discriminatory healthcare
• Legal protections against harassment and mistreatment
• Housing and public services

If gender dysphoria is stripped from disability law, trans people will lose crucial protections that allow us to survive in a world already stacked against us.

While not all trans people have gender dysphoria (and a trans person without dysphoria is absolutely valid and real), being discriminated against for being transgender can create dysphoria in a person who otherwise wouldn’t experience it.

Gender Dysphoria Is a Disability—By Every Definition

The right-wing argument against this ruling hinges on the idea that gender dysphoria isn’t really a disability. But under both the medical model and the social model of disability, gender dysphoria clearly qualifies.

The Medical Model of Disability

The medical model defines disability as a condition that impairs a person’s ability to function in daily life. Under this model, gender dysphoria qualifies because:

• It is a recognized medical condition in both the DSM-5 and ICD-11.
• It causes significant distress and impairment when untreated.
• It requires medical intervention (such as hormones, surgery, and social transition) to alleviate symptoms.
• The medical community agrees that gender-affirming care is necessary treatment, not optional or cosmetic.

The Social Model of Disability

The social model of disability states that people aren’t inherently disabled—they are disabled by societal barriers. Gender dysphoria qualifies under this model because:

• Trans people face systemic discrimination in housing, employment, education, and healthcare.
• The distress of dysphoria is worsened by social rejection, lack of access to medical care, and legal barriers.
• If transition-related acceptance, healthcare, and legal protections were universally accessible, gender dysphoria would not be disabling for most trans people.

Section 504 exists precisely to address barriers like these. Removing gender dysphoria from disability protections doesn’t make trans people any less disabled—it just makes us easier to discriminate against.

The Hypocrisy of the Right’s Argument

Conservatives are trying to have it both ways. They frequently claim that trans people are “mentally ill” to justify discrimination. But the moment gender dysphoria is recognized as a legitimate medical condition deserving of protection, they turn around and argue it’s not a real disability.

This is bad-faith politics, plain and simple. Their goal is not consistency—it’s to strip trans people of every possible protection.

But the impact of this case won’t stop at trans people. If Texas wins, it sets a precedent for removing other disabilities from legal protection—especially mental health conditions, chronic pain conditions, and other “invisible” disabilities that conservatives don’t “approve” of.

The Dangerous Legal Precedent

This lawsuit is a test case for weakening disability rights overall. If Texas et alia succeed:

• Other states will follow suit, filing lawsuits to remove protections for other marginalized disabilities.
• The legal definition of disability could be narrowed, making it harder for people with chronic illnesses, mental health conditions, or neurodivergence to get accommodations.
• Schools, workplaces, and healthcare providers could legally deny services to disabled people, citing this ruling as precedent.

Conservatives have long wanted to dismantle the ADA and 504 protections—this case is just their latest attempt. They are using trans people as the wedge issue, but their real goal is to weaken disability protections for everyone.

What Can We Do?

This lawsuit hasn’t been decided yet—which means we still have time to fight back.

Stay Informed and Educate Others

Attend briefings and webinars to stay updated on the lawsuit’s progress and its implications. The Disability Rights Education & Defense Fund (DREDF) recently hosted a community briefing discussing the lawsuit and ways to take action.

Share information within your networks to raise awareness about the potential impact of this lawsuit on disability rights.

Support Advocacy Organizations

Consider donating to or volunteering with organizations actively working to defend disability rights, such as the National Council on Independent Living (NCIL) and the Disability Rights Education & Defense Fund (DREDF)

Contact Your State Attorney General

If you reside in one of the 17 states involved in the lawsuit—Alaska, Alabama, Arkansas, Florida, Georgia, Indiana, Iowa, Kansas, Louisiana, Missouri, Montana, Nebraska, South Carolina, South Dakota, Texas, Utah, and West Virginia—urge your Attorney General to withdraw from the case. The National Council on Independent Living provides an Advocacy & Action Center to assist you in this process.

If your state is not part of the lawsuit, encourage your Attorney General to support Section 504 by submitting an amicus brief. The National Down Syndrome Society offers an action alert with guidance on how to proceed.

Share Personal Stories

Personal narratives can powerfully illustrate the importance of Section 504 protections. Consider sharing your experiences with national organizations, local disability rights groups, and the general public if you have a platform online.

If you are trans, disabled, or both, your voice matters. Talk about how these protections impact your life.

Conclusion

Texas v. Becerra is not just an attack on trans people—it’s an attack on the entire disability community.

As a trans, multiply disabled, Autistic person, I need these protections to survive. If this lawsuit succeeds, it could set a dangerous precedent for removing disability rights piece by piece.

We cannot let that happen.

The fight against this lawsuit is a fight for all disabled people, and we must stand together to stop it. Oppressors are hoping to turn us against each other so we don’t notice what they’re doing. Resist the attempts to divide us. Solidarity is key to protecting our rights.

[content note: this blog essay mentions poverty, lack of adequate support, mental health issues, and sui*]

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People talk about independent living like it’s a universal goal, a sign of success. They measure it in rent payments made on time, meals cooked in a kitchen, and the ability to keep a 9-to-5 job. If you can check all the right boxes, you’re independent. You’re thriving.

Except I live independently, and it looks nothing like that.

My independence doesn’t come from holding down a traditional job, cooking in a standard kitchen, or living in a house with four walls and a roof. My version of independent living means surviving in ways most people wouldn’t even consider. It is so outside-the-box because a box is dark on the inside, and living in darkness makes me sick.

Surviving by Refusing the Box

For me, living inside four walls without enough light isn’t just uncomfortable—it’s dangerous. Because I have Non-24-hour Sleep-Wake Syndrome, my body is tied to the sun in ways that most people don’t understand. Without sufficient (read: huge quantities of) natural light, my sleep schedule unravels. But it’s more than just insomnia or trouble sleeping. Without near-constant, daily exposure to daylight and dark nights, I become desynchronized, exhausted, isolated, and lethally sick.

So I designed my life around that reality.

Instead of forcing myself into an apartment with windows too small to be of any therapeutic value, I made my home in a minivan with uncovered windows, where I can wake with the sun and see the moon every night (though I’m currently forced to park in the middle of urban light pollution). Instead of trying to squeeze into an environment that harms me, I built an environment that mostly works—one that moves with me, one where I control how much light I get (sadly, at the cost of controlling how much darkness I get), one that doesn’t leave me trapped in a darkened room because laws require walls and a residential address to exist as anything more than a marginalized outlaw.

Most people assume I’m struggling in ways other than the actual struggles I’m coping with. Often, they see my solutions for my struggles and decide the solution is the struggle and think they understand my life. They see my minivan and my unconventional life and think I must be failing at independent living. They refuse the support I need, insisting that they have to help me live in a dark box before they will support me. I have to agree to become more disabled before I can get disability assistance beyond a small monthly check and Medicaid I rarely get to use. 

I designed a life that protects my physical and mental health.

I adapted in ways that no system would ever have suggested, because systems are built for non-disabled, housed, workers. The only people who seem to get access to the kind of housing that would actually promote my well-being instead of killing me—plenty of windows, sunlit rooms, natural surroundings—are those who can afford luxury architecture. But I refuse to believe that only the rich deserve to live in ways that support their health.

Why Am I Considered Independent When I’m Dying, But Not When I’m Trying to Stay Alive?

Despite all of this, I still can’t get the support I need.

If I lived in a dark, windowless apartment, crashed out from exhaustion, unable to function,  dying from illness that goes into remission when I live in the sun, I’d still be considered “independent” in the eyes of the system. If I were rotting but inside a socially acceptable structure, I’d qualify for help.

But because I problem-solved my way out of the N24 trap, I’m told I don’t qualify for anything.

I’m still poor.

I’m still disabled.

I’m still struggling to find meaningful work that doesn’t destroy me.

But I live in a way that keeps me alive, and because of that—as well as the overall “function level” other people have decided I have (and punish me when I fail to live up to my assigned function level)—I am excluded from support.

Agencies look at me and say, You don’t fit into our programs. Vocational Rehabilitation has turned me away twice now (in Kentucky and in Idaho) as too disabled to help. Other agencies won’t help me because I have college degrees instead of intellectual disability.

They don’t know what to do with someone who is both struggling and succeeding in the balance of my life. They don’t understand that just because I’ve found one or two solutions, it doesn’t mean I have all the solutions.

They tell me I look like I’m doing “fine.” Either they aren’t looking closely enough, the ways autism looks can be deceptive, or both.

I’m not fine.

And I’m not the only one.

It’s Not Just Me—Most Autistic Adults Aren’t Getting the Help They Need

A 2019 study in the journal Autism found that autistic adults report far more unmet support needs than the general population . But here’s the kicker: even though autistic people are at much higher risk of depression, anxiety, self-injury, and suicide, we are less likely to receive mental health care or support services.

(And it’s a vicious cycle, since the study found lack of adequate support increases depression, anxiety, self-injury, and suicidal ideation and completion.)

So many of us have been told we’re too independent to qualify for help but too disabled to actually function in the world as it is. One person in the study summed it up perfectly:

“I feel ‘lost’… I am too high functioning for most autism programming, but not neurotypical enough to function well in conventional work and social environments.” 

Another participant described being actively suicidal but told to wait nine months for help. Another was told that because they didn’t have a co-occurring intellectual disability, they weren’t eligible for services at all .

They were expected to fail in the right way before they could get help.

Just like me.

Independence Shouldn’t Only Mean Doing Everything Alone

I’m tired of living in a world where you have to fail in a way the system recognizes before you can get help. Where you have to be miserable in the right way to qualify for support. Where only the wealthy get to design their lives around their actual needs, while the rest of us are expected to just suffer through it. (Or become outlaws, like me.)

Independent living shouldn’t mean struggling alone. It shouldn’t mean being punished for figuring things out. It shouldn’t mean having to choose between a life that works and a life that qualifies for help.

I built a world that preserves my health and keeps me alive.

That should count for something.

That should be enough.

My necessary self-accommodation should not bar me from the external support I need, to move from surviving to thriving.

Every month, I wait.

I wait for the direct deposit that determines whether I and my cat eat, whether I can afford to get my oil changed so the car I’m living in doesn’t die and leave me stranded and sleeping in the streets, whether I can pay for the cheap storage unit where the remnants of my life are crammed together like a sad little time capsule. I wait with my heart in my throat, because I know—I know—that one day, the money might not come. And that day may be as soon as next month.

Because when you live on Supplemental Security Income (SSI), you are always one bureaucratic decision away from being erased.

And now, the erasure is happening in real time.

Trump’s goons have taken over the federal government. Not through elections. Not through Congress. But through brute force: physically seizing agencies, shutting them down, rewriting the computer code that runs the Treasury, deciding who gets paid and who doesn’t.

Elon Musk—who is not an elected official, not even an appointee in the traditional sense, but a billionaire who believes money equals divine right—is openly bragging about “feeding” the U.S. Agency for International Development “into the wood chipper.” Ten thousand employees, gone. An entire foreign aid infrastructure, wiped off the map. Just like that.

And now, Musk and his people are inside the Treasury. They’re rewriting the systems that make Social Security payments, that distribute benefits to disabled people, to veterans, to retirees. They say they’re cutting “corruption and waste.” I know exactly what that means. I know who they think is waste. Their hero called us “human ballast”.

It’s people like me.

People who rely on the government to survive. People who don’t fit into their billionaire vision of “deserving.” People they can starve out and push to the margins because we don’t have the power to fight back.

And so I wait.

I wait for a letter in the mail telling me my benefits have been cut because of a “routine review.” I wait to check my bank account and see a zero where the lifeline used to be. I wait to find out whether I can keep barely surviving, or whether this is the month that survival runs out.

I’m already living hand to mouth. What happens when the hand disappears?

The worst part is, I’ve seen this coming. We’ve all seen it coming. They’ve been dismantling the social safety net for years, chipping away at it, eroding it, making it more difficult, more bureaucratic, more humiliating to access. The application process alone is a gauntlet of suspicion and cruelty. Prove your disability. Prove your poverty. Prove you’re suffering enough. Then, if you’re lucky, you get a pittance: just enough to keep you alive, but not enough to actually let you live.

And now? Now they don’t even want to bother with the pretense of pretending we deserve to exist.

They’re gutting the government in real time, and Congress is standing around, hands in pockets, pretending they don’t see the blood on the floor. The Republican Senate Majority Leader, John Thune, claims he “doesn’t believe” this is happening. That they’re just “reviewing how the agency is spending money.” Either he’s a liar, or he’s a coward. Either way, we’re the ones who will pay the price.

I am furious. I am terrified. I am exhausted.

I have spent my entire life fighting for scraps, for dignity, for the disability support that never comes, for the right to simply exist. And now, people who have more money than they could spend in a thousand lifetimes are pulling the plug on the only thing keeping millions of us from sinking into oblivion.

So I wait.

I wait to vanish. I wait to be declared “waste.” I wait to find out if I still have the right to survive next month.

And I am so goddamn tired of waiting.

Autism is a disability. How each Autistic person relates to this fact, however, is deeply personal. Some of us embrace being Disabled as an important part of our identity. Some feel disabled by autism while others feel disabled by society, rather than autism itself. For some, the disabling aspects of autism depend on their environment, while others don’t identify as disabled at all. And that’s okay—our individual relationships with autism and disability are as diverse as we are.

But one thing remains true: autism is always a disability.

This truth matters. Without recognition as a disability, society, government, and medicine would have no obligation to accommodate us. The systems we depend on for survival—whether disability benefits, healthcare, education, or workplace accommodations—exist because autism is classified as a disability. If autism were no longer recognized this way, many of us, myself included, would be left to fend for ourselves in a world that isn’t built for us.

What Makes Autism a Disability?

Disability is often misunderstood. The medical model defines disability as a condition that significantly impacts a person’s ability to function. Autism fits this model because it involves neurological differences that affect how we communicate, process sensory information, and navigate the world.

The social model of disability shifts the focus away from the individual and onto society. From this perspective, people are disabled not by their differences but by the barriers society creates—like rigid expectations, inaccessible environments, and a lack of understanding. Autism fits this model too. When systems are designed for neurotypical people, Autistic people are inevitably excluded and disadvantaged.

Both models have elements of truth, and both explain why autism is a disability within that paradigm. This doesn’t mean autism is inherently bad or that we are broken. It simply recognizes that the world wasn’t built for minds like ours, and that creates real, often life-altering challenges.

Are You Disabled?

While autism is always a disability, how we relate to it as Autistic individuals varies widely:

Some Autists proudly identify as Disabled, finding empowerment and community in the disability rights movement.

Others feel disabled by autism itself, especially when co-occurring conditions, sensory challenges, or communication difficulties make daily life a struggle.

Many feel disabled by society, not by their autism. In a supportive environment with accommodations, they might not feel disabled at all.

Some don’t identify as disabled or may even become offended if someone suggests they are disabled. 

These perspectives are all valid. Your relationship with autism and disability is yours to define. What matters is that we respect one another’s experiences and autonomy while recognizing the shared reality that autism is a disability.

Why Denying Autism as a Disability Is Dangerous

Here’s the problem: if we deny that autism is a disability, we risk losing the very systems that keep us alive.

Disability recognition isn’t just a label—it’s a lifeline. It’s what ensures access to healthcare, education, employment accommodations, and legal protections. If society decided autism wasn’t a disability, it could justify cutting off resources. Autistic people could be told to “buck up,” “fit in,” or “fly right”—and those of us who can’t would be left behind.

This is a matter of survival for many of us. Personally, I wouldn’t be here if autism weren’t recognized as a disability. And I know I’m not alone.

Autism as Disability and Diversity

Some worry that calling autism a disability erases the idea of neurodiversity. But that’s a false dichotomy. Neurodiversity and disability can coexist.

The neurodiversity movement challenges the idea that there’s only one “right” way to think, learn, and experience the world. It celebrates neurological differences, including autism, as natural variations of human diversity.

But recognizing autism as part of human diversity doesn’t mean it’s not a disability. It means that disability isn’t a bad thing. It’s simply a reality, and one that society needs to accommodate. By accepting autism as both a disability and a natural expression  of human diversity, we can advocate for a world that values us as we are while also meeting our needs.

The Power of Solidarity

Whether you proudly identify as Disabled, feel disabled only in certain contexts, or don’t see yourself as disabled at all, autism’s recognition as a disability protects all of us. It ensures we aren’t left to fight for scraps in a system designed for neurotypical people.

Disability isn’t something to be ashamed of. It’s a call for society to do better—for workplaces to be accessible, for schools to support all learners, and for governments to recognize and meet the needs of all its citizens.

Autism is a disability. But how you relate to it? That’s entirely up to you.