I know that’s a controversial thing to say, especially in America. We’ve been programmed to aim for greatness, to strive until we break ourselves, to lay ourselves down for our craft. We want to “become someone.” We want to build legacies that outlive us.

It could make anyone feel guilty for admitting they’d rather just… live. When did being ordinary become such a frightening idea?

To understand where this constant need to be “chosen” comes from, we can go back to early Protestant theology. Long after the strict religious beliefs faded, the underlying mindset stuck around: that your life should demonstrate your worth and that worldly success could be interpreted as evidence of virtue.1

This blended perfectly into American myths of the “self-made man” and the “rugged individualist,” pushing the idea that a worthy person is someone who makes something of themselves through their own effort.2

But this essay isn’t really about individualism. Having autonomy and the freedom to direct your own life has immense value, especially for disabled folks.

This is about exceptionalism. It’s the belief that an ordinary life isn’t enough.

Capitalism needs this differentiation. If everyone is ordinary, then who buys the course? Who builds the personal brand? Modern capitalism increasingly monetizes identity itself.

This is a newer shift. A century ago, early industrial capitalism needed standardized factory workers and predictable consumers who all bought the same soap and cars. But as the market got crowded, the system had to change tactics. Instead of selling things to help us fit in, it started selling things to help us stand out.3

The self-esteem movement of the 1980s-90s adds another layer. In an effort to build confident kids, schools and parents increasingly emphasized self-esteem and unconditional praise. Children were told they were special and destined for greatness. Some critics now argue that this emphasis on feeling exceptional may have produced a generation increasingly afraid of being ordinary.4

Then came the internet. Social media industrialized all of it, causing many of us to feel pressure to perform uniqueness. In our attention economy, the only way to stand out is to be memorable.5

We’ve been compelled to turn our hobbies into businesses, monetize our passions, optimize our personal branding, and find our purpose. We’ve been performing our lives for a long time, but not really living.

When the World Stopped, My Body Did Too

I was so caught up in performing this hustle too. It was killing me slowly, but I ignored my body’s protestations.

As a budding musician, I took every creative opportunity with desperation. I tirelessly traveled and played shows and did photoshoots.

When COVID hit and the world stopped, it was a blessing and a curse. I felt devastated to lose momentum. Many of us were now at home, so the bid to stand out online became even more difficult to achieve.

And my disabled body became harder to ignore too. I was so fatigued I never woke up rested anymore. Some days the pain was so bad I didn’t want to leave bed. Suddenly, I had to face the truth of it.

I lost my health alongside losing the identity I’d been taught to chase. The grief was immense.

Disabled people often lose access to nearly every socially rewarded marker of exceptionalism. We may not have the impressive careers, the constant adventures, the conventionally beautiful bodies, the endless energy and productivity, the financial success.6

It forced me to face this sense of self worth I’d carefully constructed only around what I could produce. Who am I if I’m not working or making money? Who am I if I’m not remarkable?

The Myth of Doing It Alone

It also forced me to face my own fragility and humanity.

I fear I was chasing this specialness not out of truly wanting fame or fortune, but because I didn't want to be alone. I wanted to belong somewhere, and somewhere along the way I learned that the fastest way to earn belonging was to become exceptional. If I was talented enough or interesting enough, surely people would want me around.

As I rely more on others to help take care of me, I see how nobody is actually independent. Healthy people can pretend they are, but every single person relies on others: the people who plant your food, build your roads, teach your children, and take your temperature at the doctor’s office when you go in with a stomach bug.

Disability exposes a dependence that was there all along.

I wonder: what if meaning could come from mutual reliance instead of a frantic race for uniqueness? If worth comes from our shared contribution instead of individual distinction, suddenly everyone’s life can matter.

“Interdependence moves us away from the myth of independence, and towards relationships where we are all valued and have things to offer. It moves us away from knowing disability only through ‘dependence,’ which paints disabled bodies as being a burden to others, at the mercy of able-bodied people’s benevolence.” — Mia Mingus7

Maybe I don’t want to be special.

I don’t want to stand above other people.

I want to stand among them.

Check out some other essays I’ve written:

What I first thought was that I felt regret.

You see, a friend of mine was performing and I really wanted to support her. But my body wouldn’t comply.

Festivals are generally not made for chronically ill bodies. They’re a riot of sensation, and my body started revolting within an hour of arrival. My muscles were locking up, tensing without my consent. I began to shiver uncontrollably, my nervous system going into overdrive. All I could do was try and breathe through muscles that refused to unclench, as I stared into the distance attempting to dissociate the waiting time away.

By the time she went on stage, my body had been waving a white flag I’d done my best to ignore. Her set was amazing. In the excitement of it, I pulled a second wind out of thin air, and I made it probably 20 minutes before we had to leave.

It was a fair choice health-wise, the leaving. My body was legitimately in bad shape by this point. But the day after, I began to berate myself in my regret that somehow I could have stayed. I could have found another spot where I could sit down. I could have powered through.

But these aren’t really regrets, are they? They’re me trying to negotiate away my disability.

The real accommodation I wanted was to have a different body.

We often only think of accommodations as ramps, seating, quiet rooms, shorter lines. But sometimes none of those are enough. Sometimes the thing we’re mourning is that no accommodation can remove the tradeoff.

Conveniently, after the moment has passed, these far fetched possibilities of sitting and powering through can’t be proven. My brain latches onto the potential, playing it on loop in a cycle of guilt and regret.

Underneath this feeling I’ve felt more times than I can count is a seed of something else though. It’s the feeling that I didn’t stand up for myself.

This is a common one for me. After suppressing what my body and mind need to feel comfortable, safe, and happy for three decades, it’s a huge unlearning process to assert boundaries and ask for accommodations. There’s a big fear of misunderstanding after being so often dismissed or labeled as difficult or overdramatic. After a while, I chose to stay silent. But now I can feel this silence in the tension of my throat, a painful burning knot that forms there whenever I choose not to say something again.

The feeling that I didn’t stand up for myself is one that has burrowed deep. It’s knotted up in so many moments over my life. I’ve replayed doctor’s appointments this way. Relationships. Vacations. Family dinners.

It’s a ghost that’s still haunting me. But it’s just a feeling, not even something based in reality anymore.

Because, in one way, I did stand up for my body that was hurting and beyond needing for me to give it a break. I left, and I went to rest it.

In the aftermath of the magic of witnessing even part of my friend’s performance, I started to doubt whether the moments of beauty were worth the pain. The two hours prior to her set waiting at the festival where I couldn’t stop my body from shaking and shivering despite the summer temperatures. The two mile walk out of the festival to get to the Uber pick up point. The three hour car ride home the next day.

I wanted more light to balance out the darkness. But life doesn’t often work like that, experiences that can neatly fit into one or the other.

A younger part of me still believes that if I had stood up for myself, I would have found a way to get both things. The concert and the lack of consequences. The joy and the absence of pain.

And that’s when I realize my regret isn’t coming from abandoning myself. It’s coming from grieving a limitation. Sometimes there is no version of the story where I get everything I want.

It turns out you can accept disability as an identity long before you accept it as a reality. That’s a much more painful acceptance.

Accepting disability as an identity mostly asks you to change how you think about yourself. But accepting it as a reality asks you to give things up.

One happens in your mind. The other happens every time your body says no to something you love.

The regret is almost a decoy emotion, concealing the deeper grief that my body asked for something that cost me something beautiful.

I’m trying to learn to dwell on the fun parts, even while my body continues to remind me of all the rest. It’s okay if I try this time and don’t quite make it. Because uncovering what was hiding underneath a feeling that has haunted me for 30 years, that’s the real magic.

I no longer think the regret will disappear. The bargaining probably won’t either.

There will probably always be a younger version of me looking for the story where I get both things. But maybe next time I’ll recognize her sooner.

Maybe instead of arguing with her, I’ll understand what she’s really grieving.

Previous essays I’ve written:

As with my essay on disabled friendship, I wanted this piece to be larger than my own story. Disability is not a monolith, and neither is disabled love.

My perspective is that of someone who became disabled within an existing relationship. I also want to acknowledge those who were born disabled, those who entered relationships already disabled, those whose relationships have ended because of disability, those who have never had the opportunity to experience partnership because of ableist assumptions, and those who simply don’t desire romantic relationships at all. I hope these collected voices offer a broader glimpse into what disabled love can look like.

I don’t feel like an easy person to love.

I met my current partner when I was still able to get by and mostly hide my disabilities. Cam was in a similar boat, becoming sick as a teenager, but then being able to oftentimes hide his chronic illness. We were both going through life pretending to be well.

“What’s really interesting about non-disabled love I find a lot of the time is that they’re stuck in the same performance trap I was when I was trying to hide my illness. Everyone is forced to perform a version of perfection that is impossible to attain so getting to know anyone becomes very difficult. Although not everyone is experiencing disability, everyone is held to an impossible standard and self-policing impossible standards onto others. The beauty I’ve found in accepting my own disability is that I can let myself off the hook. I’m not perfect. That’s okay.”
—

I didn’t even consider myself disabled when we met. But five years ago, it snuck up on me, my body finally giving up the fight after pushing past my limits for too long. My comorbidities rearing their ugly heads one by one.

Becoming Someone Who Needed Care

I started to become more reliant on my partner for every day tasks, making the meals, running the errands, taking the phone calls, caring for our dog. My autonomy slowly slipped through my fingers.

And with it, I carry a lot of grief but also shame and guilt.

“We already subconsciously feel like a burden. Well, I’ll speak for myself. I feel like a burden when I can’t get my mood to match the moment, or I can’t get out of bed, or I need extra help to function. Being intentional about not making me feel like a burden goes a long way when loving me.”
—

It’s been an unbearable reckoning. Not only with the fragility of being a human on this planet, but also facing my own issues around self compassion and worthiness. In that regard, disabled love can be a path back to ourselves. A light in the darkness. A hand to hold that says, I see you and you’re loved exactly as you are.

When one person becomes the one scheduling appointments, carrying groceries, remembering medications, or taking on more of the invisible labor, it’s easy for those roles to become identities. One becomes “the caregiver.” The other becomes “the one needing care.” One of the hardest parts has been remembering that we’re still partners first. We’re still two people who make each other laugh, annoy each other, dream together, and care for each other in different ways.

Cam and I have swapped caregiving roles a few times over the years, and I think this has taught us more compassion. We’ve had moments of suddenly sharing symptoms, oh, so this is what you meant. I get it now and it sucks.

Learning My Worth Again

“I’ve radically reimagined my relationship to independence, for example, accepting a great deal of practical support from one of my partners has gradually become more comfortable over time. Yes, I feel guilt and shame at times for the unevenness of contribution in tangible terms, but I have also been slowly learning that the ways I give and love are just as valuable as the more visible, culturally valued ones. For example, my listening, deep reflections, humour, intellectual interests, personal growth inspiration and emotional support. This has deepened my ability to love myself as I am, too.” —

Accepting that what I bring to our relationship looks different than an able-bodied partner has been a journey. Even though we tend to hold physical acts to a higher value in relationships, emotional attunement, depth, creativity, tenderness, presence, resilience, and wisdom matter just as much.

I remember conversations where Cam was overwhelmed and I was the one who held space for him. Times when I organized systems for our lives because my autistic brain thrives there. Even when I write these essays that share new perspectives and emotional vulnerabilities. These all matter and bring something important to our relationship. Those contributions don’t disappear simply because they’re harder to measure.

“The sicker I got, and the more vocal about being disabled, I received hurtful comments from people I was dating. Things like, ‘I could never be with someone who was chronically ill long term.’ Or, ‘I don’t find it attractive to have to make accommodations.’ I wasn’t aware of how ableism could show up in this realm until I was actually shunned for my disabilities. Of course it has an impact on self-worth and desirability.
In my much more secure, loving, supportive long-term relationship, these themes still show up - but it is mostly in how I perceive myself, and how the ableism of society has infiltrated my thinking. I’ve had to become very conscious of how I speak to myself, weeding out the discriminatory narratives from my marrow.” —

As an autistic woman, I’ve struggled my whole life with the question: Am I too much? Often being called overdramatic as a child and young adult when attempting to explain my tumultuous and frequently painful sensory world. Often an eye roll when I reacted too big to something that brought me joy or physically hurt me.

There’s a lot of internalized ableism I’m still working through. When I feel down, I worry that I’m too much work, that my partner could just find an able bodied person who is easier to love. The fear of being abandoned often bubbles to the surface.

Ableism doesn’t disappear once you enter a loving relationship. It sneaks into conversations about productivity, sex, independence, contribution, desirability.

“A lot of the time, people have all these assumptions about what a relationship ‘should’ look like that are very narrow because of ableism and individualism. Disabled people are also often infantilized, desexualized, and even fetishized. All three experiences can impact our experiences dating, our experiences with intimacy, and even our relationship with our own body, so I really wish non-disabled people would work on tackling the ableism they’ve learned that leads to these ways of viewing disabled people.” —

Love That Doesn’t Need To Fix

Cam and I both have acted fine so the other doesn’t worry. I have hidden myself away in the past within this relationship and others. I’ve smiled through dinner even while feeling like I might pass out.

It’s terrifying to have to say, Hey, I’m vulnerable right now. I’m feeling weak. I need you. It’s showing your soft underbelly and praying that your sensitivity is not dismissed or taken advantage of.

“The slow quiet process of letting go of the idea of control is the biggest piece that is giving me peace. I often say it takes a lot of patience to be a patient but the same goes for love and romance. Most days it doesn’t look like big gestures or crazy adventures. Most days it’s just reassuring each other that we still love each other no matter how we can show up that day. That type of love that isn’t performative gives me the confidence to approach the rest of life with less fear and more of me.”
—

There’s a need for more open communication, acceptance, and understanding than ever before. And the need to be heard but not fixed.

Our culture is obsessed with optimizing and perfecting, so when your body or your mind can’t comply there’s a natural suspicion there. There’s a fear that can manifest as endlessly searching for a solution. Accepting that you could become disabled at any moment is really tough to do.

From the outside world I’m getting this all the time. I’m seeing the stories of inspiring disabled people and the people who’ve cured their illness. I’m getting friends and family and doctors suggesting this supplement or that treatment. My relationship needs to be the safe space to share my fears and my suffering just as it is, knowing it might not change and having you say it’s ok if it doesn’t. If every conversation becomes another attempt to solve me, there is nowhere left for me to simply exist.

Part of accepting that I am worthy of love has also meant questioning why we place romantic relationships at the center of everything.

“I don’t need to be in a romantic relationship to be loved, and it’s not sad that I don’t want that. As a solo-polyamorous person, I don’t prioritize romantic relationships over other relationships and I think that trips them up.
Looking back to when I was 19-20, even though I had always moved in queerness I didn’t have language for the types of connections and relationship structures that best suited me. I’m grateful that even back then I was met with love and respect in my queer platonic relationships, because compulsory heteronormativity is compelling to many. Non-disabled people typically view children or romantic partners as automatic insurance policies. ‘You need someone to take care of you when you get older.’ I need people to take care of me now!
I will never trade the love that I receive from my friends and community for any romantic relationship — I have been loved more intimately by my friends and chosen family than from any romantic relationship that I’ve ever had, and I’m proud to say that because my friends are still here and they support my Black disabled autonomy.” —

We’re constantly being told that romantic relationships are the pinnacle. That to be in one is the sign of health and happiness. The search for “your other half” tells us we cannot be whole without it. Then once you’ve got that relationship, it should maximize sex, productivity, travel, adventure, and ease.

Disability has also forced me to rethink why we place romantic relationships at the center of everything. Some disabled people will never have a romantic partner. Others don’t want one. Some lose partners after becoming disabled. Some build chosen families instead. If love is only recognized when it looks romantic, we overlook the countless ways disabled people care for one another through friendship, community, mutual aid, and interdependence. Romance is one beautiful expression of love. It isn’t the only one.

When Intimacy Changes

One of the hardest things for me to accept is my lessening ability to be intimate, not only sexually, but even just cuddling. I used to love spooning or laying my head on my partner’s chest. But oftentimes my body can’t physically handle these positions anymore.

“Not being able to perform certain acts of intimacy at times, but still feeling loved and connected, has deeply impacted my sense of self-worth. Even though it’s something I very much dislike about my endometriosis, it has also been very healing for my traumatized self. Feeling loved and cared for, even in my ‘worst’ state, has been truly transformational.”
—

I worry that I’m not as desirable in this disabled body. Cam and I talk about it openly. We have to. Sometimes he tells me he misses that kind of intimacy, and as painful as it is to hear, I’m grateful he trusts me enough to say it. It’s another chance for both of us to grieve what we’ve lost without believing we have to fix it.

Romance looks different when you can’t go out as much too. There are far fewer date nights and vacations. You have to find ways to romance smaller and more steadily.

“I have learned a lot about different forms of intimacy and connection, for example, that which comes with simply “being alongside” someone, as you are, however unwell or low capacity you’re feeling, without needing to be a certain way or perform romance, or constantly give to another. There is a depth to this level of being seen that is very healing.” —

Intimacy can look so many more ways than I realized before becoming disabled. Disability just changes its language. There’s intimacy in bringing each other tea or snacks, in sitting nearby, holding hands for 30 seconds. There’s intimacy in holding space for one another’s emotions, in neurodivergent infodumping on a topic that you’re obsessed with, in rallying behind each other’s creative projects.

There’s intimacy in finding joy in small moments together. Cam will do a silly dance to make me laugh during a flare. He’ll cook us a meal that we eat together in bed. We’ll make inside jokes about the states of our broken bodies or watch TV and snuggle our dog.

Disability strips away performative romance until only real love remains.

“My disability has made me a choosy lover and a careful and selective friend. I know that not every person or connection is built for me or safe for me. I’ve taken time and done the work to learn to know and love myself. And because I am a highly sensitive lover girl with a big heart and huge capacity for love, I need to do my best to only align with love and intimate relationships that won’t cause me to regress.” —

What Disability Revealed About Love

In disabled love, as in the rest of our lives, we’re constantly choosing uncertainty. We don’t know whether our bodies or minds will decline or improve. We don’t know what next year will ask of us.

Disability didn’t make me harder to love. If anything, it stripped away every illusion about what love was supposed to be.

It made it impossible to mistake convenience for love.

Anyone can love someone when everything is easy. Disability asks what remains when productivity disappears. When sex changes. When plans are cancelled. When one person needs more than they can give back in visible ways.

Real love is built in choosing each other again and again. In the tea brought without asking. In the forehead kiss before bed. In the hands that learn new ways to hold each other. In staying curious instead of trying to fix. In saying, I’m scared, and hearing, I’m still here.

I still have days when I don’t feel easy to love. But I no longer mistake that feeling for the truth.

Disability didn’t diminish our love.
It revealed what it had been made of all along.

I’d be honored to know what disabled love looks like to you.

Leave a comment

Here are a few of my other essays:

And this privilege plays a part in why it took me so long to call myself disabled.

I’m finally ready to admit it. I’m only just beginning to have the inklings of what I’d called Disability Pride.

I was too frightened to call myself disabled until only a few years ago. Even though I’ve been disabled my whole life.

There’s the stigma. Oh, the stigma. Who wants to be devalued from something about them they cannot control?

It’s a blessing and a curse that my disability is (mostly) invisible. It gives me the privilege of entering a space and pretending I’m not disabled. Avoiding the societal disapproval often placed on disabled people.

It also makes coming out as disabled a bit more complicated, because there’s an incredible amount of distrust around invisible disabilities. They think we’re faking despite life being much harder when disabled. Yes, I’m faking this so I can suffer more. I just love living under prejudice and in isolation.

It makes my feelings around Disability Pride Month tangled. Downright labyrinthine.

And I don’t have them all worked out yet.

Part of it felt like admitting I might not ever get better. Calling myself disabled felt like grieving a future I was still bargaining for.

As long as I refused the word, I could tell myself this was temporary. A detour. Something I would eventually solve. Disability felt too permanent. Like giving up. Like crossing a line I couldn’t uncross.

If I called myself disabled, I worried I’d stop fighting. I worried I’d lose hope.

It’s deeply entwined with my own internalized ableism.

My resistance stemming from the associations I’ve absorbed about being disabled. That I’d be a tragedy or a burden. That I’d be dependent and limited. I didn’t want to become those things.

It took years for it to sink in that I already believed disabled people were those things. Including myself.

What changed wasn’t my body. My body remained stubbornly itself.

What changed was meeting other disabled people.

Reading the books of Alice Wong, the words of Mia Mingus. Reading the essays and poems of disabled folks here on Substack. Watching people refuse to apologize for existing.

I found people building rich, complicated lives inside bodies the world had taught me to fear. People making art and friendships and families. They weren’t waiting to become someone else before they started living.

And I realized I wasn’t discovering disability so much as arriving somewhere. Disabled people had already built the culture, language, stories, and community that made it possible for me to understand myself differently.

What changed was meeting myself more fully. Learning to stop relating to my body as a problem to solve. Learning how to treat myself with kindness and compassion and how to mother myself.

I know now I want to claim this identity. I feel ready to celebrate my disability. Not even because of how it stands on its own, but because it is intrinsically a part of me. And I guess I’m finally ready to celebrate who I am wholly.

I’m proud because I no longer believe disability is something that should exile me from humanity.

I’ve realized maybe Disability Pride is about refusing the shame that keeps us apart.

About finding each other. About loving ourselves and one another in a world that taught us not to.

Disability justice activist Mia Mingus writes, “One of the greatest ways to resist abled supremacy is by loving each other.”1

I’m only now beginning to understand what that means.

Check out one of my other recent essays:

Never truly a part of that community. Never to be queer enough.

The celebration of Pride itself often feels like the celebration of sexuality, of freedom and sexual liberation. But when you don’t feel sexual attraction like others it can get a little uncomfortable. How am I allowed to participate?

When sexual freedom only includes those who want sex, it’s not truly sexual freedom at all.

We live in a world of compulsory sexuality. It’s the societal expectation that everyone experiences sexual attraction, desires sex, and must participate in it to live a normal, healthy life.

“Under compulsory sexuality, the desires of those with normative sexual urges are prioritized. It’s a belief system that eschews consent and preaches instant gratification for people who want sex, but cares not for the safety, comfort, health, or autonomy of people who do not.”
— Sherronda J. Brown, Refusing Compulsory Sexuality: A Black Asexual Lens on Our Sex-Obsessed Culture

Despite not having words to call it, I felt this phenomenon from a young age. In college, I assimilated by kissing my girlfriends at parties. In my twenties, I posed nude as much as I could in my artist photos. I pursued casual sex even when I wasn’t particularly interested in it. I chose polyamory in my first serious relationship even though it made me scared. I subconsciously knew all along the best way to seem open-minded, liberated, and forward-thinking was by appearing sexually free.

Even though some of these pressures to be sexually open were fun and weren’t truly harmful, the reasons I did them were out of fear of ostracization and a pressure to be seen a certain way. It shouldn’t have relied on me using my body and my sexuality to be seen the way I was inside. We should be allowed to be liberated and not want to have sex.

Looking back, I wasn’t trying to be sexually free. I was trying to be accepted.

Those aren’t always the same thing.

Real liberation isn’t replacing one set of expectations with another. It’s having the freedom to choose what feels true for you.

Even though polyamory was frightening to me at first, it’s a fear I’m glad I faced. My partner and I are still together a decade later.

And ethical non-monogamy has truly changed my life and strengthened our relationship. It forced a completely open communication between us. And through the trust that we built over years of openness, I was able to face my jealousy, finding underneath it was a deep wound of not feeling enough.

This work wasn’t easy. It was many difficult conversations. Lots of nights alone, while my partner went out on dates, feeling too much and needing to tend to the younger parts of myself. But it was worth it.

The irony isn’t lost on me. I spent years performing sexuality to earn belonging, only to discover that what I was really hungry for was worthiness. The real work was in learning that I wasn’t going to be abandoned for being who I am. Not despite my asexuality, but including it.

These days, Pride feels a little different to me.

I’m still not the first story people think of when they picture queerness. But I’ve come to see that my asexuality belongs here too.

Pride isn’t just about the freedom to express desire. It’s also about the freedom not to.

On another note, and I recorded our first podcast together a few months ago, and it’s finally releasing to the world!

Sex in Space is an inclusive, open-minded series exploring human sexuality across all its infinite dimensions. Through candid interviews, the show features stories and voices from all genders, ages, ethnicities, and walks of life, focusing on the sociology, psychology, and science of intimacy both on Earth and in the universe.

We talk to the lovely Toshi about:
What asexuality and compulsory sexuality is
How I came to understand I’m asexual
What it was like for both myself and Cam to embrace my asexuality
Common misconceptions about what it means to be asexual
How neurodivergence is connected to this conversation
Thoughts on decoupling romance from sex
And more.

Check it out here:

More Essays I’ve Written:

Healing is My Special Interest

Liberation Includes the Right to Not Want

Welcome to Healing is My Special Interest, the newsletter at the intersection of late-diagnosed neurodivergence and healing from high control environments. Today we are continuing our Summer of Deconstruction series with a special PRIDE essay about a topic that is very near and dear to my heart. So many autistic people identify somewhere on the asexual …

Read more

a year ago · 83 likes · 6 comments · D.L. Mayfield and vōx

I’m 38 years old and I just had to ask my mom if I could borrow money. Writing that email was enough to send me into a sobbing panic spiral about potentially spending the next 50 years without stable income.

“Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick.”
― Susan Sontag, Illness as Metaphor1

There’s a strange grief in no longer being economically useful. It’s one I became acquainted with quite young. But I didn’t learn its name until my disability fully overtook my life 5 years ago, and I stopped being able to work consistently.

A note comes across my substack feed about mindset and discipline. “I have severe back pain and anemia. Made myself get up and go to the gym. Always feel better after,” Maureen comments. Mahima adds: “So true, discipline is the highest form of self-love.”

The Gospel of Productivity

We’ve been using our productivity as proof of our worth for too long now. I don’t think it’s accidental that so many of us experience unemployment or disability as a kind of moral failure.

Much of modern Western culture, particularly in the United States, was shaped by what sociologist Max Weber called the Protestant work ethic: the belief that hard work, discipline, frugality, and productivity were signs of virtue. In The Protestant Ethic and the Spirit of Capitalism, Weber argued that Calvinist and Protestant beliefs helped shape the cultural mindset that made modern capitalism feel like something morally good and necessary. Work was no longer simply something one did to survive.2

The theology faded, but its cultural imprint remained.

“Capitalism has defined ‘health’ itself as a capacity to submit oneself to labor.”
― & , Health Communism3

Now the sermons arrive through self-help podcasts, hustle culture, billionaire morning routines, “discipline over motivation” posts, and endless narratives about personal responsibility.

Even wellness culture often mirrors this logic, framing the body as something to optimize endlessly through regimen and self-control. The ideal person under capitalism is tireless, independent, resilient, endlessly capable of overriding their own limits in service of output. You may be severely injured and anemic but don’t you dare skip gym day.

When you become chronically ill or disabled, you begin to understand how deeply this ideology has embedded itself into the psyche. The shame of no longer being able to work consistently feels personal. As though my body’s inability to keep pace with capitalism says something fundamental about who I am.

It’s there every time you meet someone new and one of their first questions is, “What do you do?” They’re not asking about your passions, your hobbies, or the mundane human tasks that take up most of your time. They’re asking how you make money. How you turn yourself into income.

In this way, illness strips people not only of income but of social legitimacy. I didn’t just lose the ability to work consistently. I lost the cultural permission to feel worthy.

The Cost of Having a Body

We live inside economic systems that are fundamentally hostile to bodies that cannot produce consistently. Nearly one in four working-age disabled adults lives in poverty in the U.S., compared to fewer than one in ten non-disabled adults.4

This is before accounting for what disability itself costs.

Healthcare. Specialists. Medications. Supplements. Mobility aids. Physical therapy. Accessible housing. Delivery fees when you cannot physically shop for yourself. Ride shares when public transportation is inaccessible. Caregiving.

Even the common strategies people use to survive poverty often require forms of energy that chronic illness erodes. Comparison shopping requires energy. Cooking from scratch requires energy. Navigating bureaucratic paperwork requires energy. Applying for aid requires energy. Every survival task becomes metabolically expensive when your body is already struggling to survive.

And yet the systems meant to support disabled people are structured around scarcity and suspicion.

Disability benefits in many countries remain below survival level, effectively forcing people into permanent poverty in order to qualify for assistance. In the United States, SSI payments have remained far below the federal poverty line for decades. The Roosevelt Institute noted in a 2024 analysis, “The poverty of millions of SSI beneficiaries is a policy choice.” Almost any amount of savings can jeopardize benefits.5

It starts to become obvious after a while: support is not supposed to feel like dignity.

Many disabled people find themselves trapped inside what is often called the “benefits cliff”: the impossible bind of needing to work enough to survive, but not so much that they lose the healthcare, food and housing assistance, or disability income they depend on. Earn slightly too much, and vital support disappears.6

Capitalism is organized around consistency. The worker arrives at the same time every day and performs at roughly the same capacity. Chronic illness does not behave that way. Some days I can write for hours. Other days, sitting upright feels like scaling a mountain.

Invisible illness creates its own form of social suspicion. If you are not visibly disabled enough, people are always searching for signs that you’re exaggerating. You don’t look sick. You looked fine yesterday. But you posted online. But you went to dinner once. But you smiled in that photo.

And so many disabled people spend enormous energy trying to prove that our suffering is real enough to deserve care.

The Fiction of Self-Sufficiency

“The exhausted are the human evidence of each minute misunderstood to be an empire for finance, of each human body misunderstood to be an instrument that should play a thousand compliant songs at once.”
― , The Undying7

Capitalism depends on the fantasy of the independent body. A body that is self-sustaining and unaffected by illness, grief, aging, or collapse.

But none of us survive alone. The worker who appears “self-made” is still held up by invisible systems of care: parents, teachers, partners, friends, farmers, sanitation workers, public infrastructure, medical workers, emotional support, collective labor.

And culturally, we’ve been diminishing the importance of care labor for a very long time. It’s there in the way we often don’t consider raising children to be real work. It’s there in the way caregivers for aging parents, disabled spouses, and chronically ill family members are so often unpaid and under-supported. Capitalism consistently treats care as secondary labor, even though no society could survive without it.

What I Owe Just to Stay Alive

The shame that comes up for me around not being able to work consistently anymore is complicated. I hold gratitude and humiliation simultaneously, swirling in the pit of my stomach.

The idea of my life stretching on endlessly is no longer exciting or expansive. It’s become a source of terror about how I’ll survive. It’s exhausting constantly calculating survival.

I wasn’t always this sick. I remember coming home from my 9-5 to work on music all night. Sure, I was barely hanging on most of that time. But it was also a privilege I could blend in with my peers, even if just barely. My twenties were full of travel and fun and pushing my body past its limits, and the grief over my autonomy lost is heavy now.

I’m ashamed to have to ask for help, and anxious about the ways money changes relationships. I know it’s a blessing to have a family I can ask for support, but I worry I’ll become a burden. My internalized ableism whispers: What is my life worth if I can’t sustain it myself?

What I Am When I Am Not Producing

I’m still a work in progress in this regard. You can logically know that humans have worth beyond economic output, but knowledge is only the first step. The deeper work is trying to untangle the nervous system from the ideology. It’s trying to convince the frightened animal part of yourself that needing help does not make you less human.

I sometimes think disabled people are forced into a more honest relationship with reality than the culture around us. We cannot endlessly pretend our bodies are machines. We cannot always override pain through discipline and positive thinking. We are confronted, over and over again, with the fact that human beings are fragile.

Maybe this is part of why disability makes people uncomfortable. We interrupt the fantasy capitalism sells us: that worth can be earned and optimized through enough effort.

I still don’t know how to fully separate my self-worth from my ability to financially sustain myself. Some days I can intellectually reject these ideas while emotionally drowning in them at the exact same time. The fear is still there. The shame is still there.

But I am trying to believe there is more to a human life than how efficiently it converts energy into labor.

And maybe the real question is this:
If your worth is not determined by your productivity, then what remains of you underneath it all?

Check out other pieces I’ve written:

I used to think I had anger issues.

It felt like something else would inhabit my body. I’d throw things. Scream.
I’d lose all control. Slap myself in the head. Pound my fists into my thighs.
I’d be terrified of myself. Terrified of what I might do.
The culmination was a comedown of grief. Violent shaking. Full body wailing. Sobbing in bed under the covers.
I thought I was a villain. A monster.

I remember talking to a therapist about it a few years ago. She was my health insurance-assigned therapist while I was attempting to get an autism diagnosis. She knew I was trying to get an assessment and yet she never mentioned autistic meltdowns. Instead she gave me classic anger management suggestions. Most of them were more harmful than helpful, because if they didn’t work then what was wrong with me?

I feel like autistic meltdowns in adults are rarely talked about. I hear about them in children, but much less from adults themselves. Even among my autistic friends, it doesn’t come up. And because of that, I wonder how many of us are moving through this alone, not realizing these reactions aren’t our fault.

An autistic meltdown is an intense, involuntary reaction to being overwhelmed, whether by sensory input, emotions, or too much mental strain. In those moments, the nervous system essentially goes into overload, and a person can temporarily lose their ability to regulate their behavior. It’s not intentional or controlled, and it isn’t about getting a desired outcome. It’s closer to a fight-or-flight response, and can show up as crying, shouting, physical agitation, or needing to escape the situation.

I know this now, but knowing can’t change everything all at once.
Shame is a beast I used to keep in a cage in my chest.
I’ve opened the doors, but it thinks it’s my friend now.

I just had a meltdown.
And now I feel wrung out, drained of all emotion.
The only thing I can do now is dissociate. I have no capacity for anything else.
My face aches, hot and swollen.
My body hurts, my muscles sore from latent tension.

I tell myself, it’s ok little one.
It doesn’t feel ok.
But maybe not feeling ok doesn’t mean I’m broken.

Sometimes a lifetime of brokenness takes another lifetime to fully dislodge from your body.
I know it’s not my fault, but I’ve been hiding so long.
And when you hide your whole life, you’re sure there was a reason.
Long after you realize it’s no longer necessary.

I think naming it here helps.
I’m trying to treat myself the way I would treat a friend.
Gently.
Like I’m worth staying with.

What did you call your meltdowns before you had language for them?

Leave a comment

Some previous pieces I’ve written:

It’s been one of the biggest sources of grief for me, as a creative person who became chronically ill.

Because I can remember what I used to be able to do.

I mourn the ability to dream big combined with the energy to make it happen. I mourn the pieces of my creative soul that I had to put to rest because it felt like they were killing me.

When you’re sick, projects stretch into the horizon with no endpoint. It can feel hopeless.
Your goals have to become portions. Otherwise, they disappear into the whole.

I have only crumbs now.
But crumbs force a different kind of attention. With something so small, it’s even more treasured. I hold it gently so it doesn’t disappear. I keep my eye trained on it.

With only minutes worth of energy to spare, I don’t waste time pretending I’m not tired. I enter that vulnerable space with haste and honesty I had to work so hard to reach before.
I’ve found the perfectionism that used to plague me is background noise now.
If my body is like this — this thing the system says isn’t good enough, this sick thing, this frail thing — and I accept it, then maybe nothing else has to be perfect either.
Not me. Not my art.
It seems I learned how to be sick.

There’s an invisible skill I’ve had to perfect: stopping.
It’s something I truly didn’t understand when I had more capabilities. I didn’t have to, when I could still pass as able-bodied. I constantly ignored my limits.
Anyone can push through, but very few people know how to stop before harm.

I’ve learned that stopping is a creative discipline. It’s a form of self-trust. It’s a refusal to sacrifice tomorrow for today’s output.
My creative practice used to be about how long I could go. Now it’s about how precisely I can leave.

I used to be able to work on music for hours. Never as long as my peers, but still always riding on the cusp of acceptable. An amount that meant I could hide my disabilities from others. A blessing and a curse.
Now the dissociating starts after about 45 minutes. Sometimes I’ll hang on, trying to stop from slowly floating away from my body.
But then I just can’t. And as any chronically ill person knows, once you hit the just can’t, you’ve ruined the next day too. Maybe even the next few days.

That’s the violence in overshooting your limits. Capitalism trains us to ignore that signal.
Chronic illness makes that signal non-negotiable.
Healthy people experience just can’t as a suggestion. For me, it’s a consequence.

I wonder, if you can’t measure your creativity by output anymore, what is left?
These days it’s become about staying in relationship with my art.
Some days the goal isn’t to make something.
Just to touch it so it knows I’m still here.

What I miss most is the immersion. Sinking into a headspace with the spirits. Losing track of time to look up hours later at the shifted light.
I miss the version of myself that didn’t have to negotiate with my body.
The grief of losing creative ability is a special ache.
It brings an anger that scalds if you hold it too tightly. A fear that paralyzes.
What’s the point if I can only have crumbs of a former creation?

Disabled creativity has been teaching me about the power of staying. The power of the smallest increments over time.
It’s teaching me to step back. If I stay too close to a project, I forget to appreciate that two months ago it didn’t exist and now it has a form.
And no matter that final form, I still made something out of nothing. That’s precious.
It’s teaching me that creativity still exists, even if the form isn’t recognizable. That something small is still something. That something spectral is still something.

I don’t get to disappear into my creativity anymore. But sometimes, briefly, it still finds me.
And maybe that’s what these crumbs are.
Not the remains of something I’ve lost, but a way of being fed differently.

So I’ll meet it.
I stay as long as I can.

And then I leave.
On purpose.

Which, it turns out, is its own kind of devotion.

What are you learning to do in smaller ways than before?

Leave a comment

Check out some previous pieces I’ve written:

Being friends with a disabled person is an honor, but our friendships can look a little different. I wanted to capture what that actually means, so I invited a few disabled voices I love to share their experiences alongside my own. Please click through to their profiles and show them some support.

Disability is not a monolith, and this is only a glimpse. I’d love to hear what disabled friendship means to you in the comments.

It can be so isolating living in a disabled body. I know this intimately.

No one else is inside this body, and words are often not enough to truly describe sensations. Pain can mean so many disparate things. Fatigue has distinctly different meanings to a sick person versus a well one.

The longing and grief of not getting to live like a well person is a depth that seemingly has no end. Especially as a disabled person under 40.

It can hurt so badly to want to do something, to want to be out with friends at a birthday party, a concert, a bar. It can feel so unfair. To feel like you let your friends down. To come up against the monster of your illness, teeth bared, but all you can do is cower in your bed alone.

Friendship with a disabled person requires flexibility.

My body often won’t allow me to leave the house. It won’t allow me to stand for more than 10 minutes. It isn’t safe in a busy public place where everyone is unmasked. It can’t take bright lights or loud sounds. Every outing needs to be planned for sensory overwhelm, physical limitation, and energy deficits.

“I might be acting normal on the outside but I could have no energy at all. Isolation doesn’t just come from spending too much time alone. It comes from our lived experience being so different than a lot of people. Some days I can do a ton, walk 5 miles, talk on the phone for hours. Other days I can barely get out of bed. Hour by hour is a different experience. It can be a real rollercoaster and isn’t directly related to the energy I put out. Phrases like ‘How are you doing?’ can feel very complicated.”
–

Finding a friend who appreciates coming into my home is key. For your travels, I will shower you in delicious snacks. My home is lovingly cozy and meticulously beautiful since I spend most of my time here. And you’ll get to see the me that’s most at ease, most able to focus, able to be whole and vulnerable.

My body needs to be babied. To be cared for tenderly. And sometimes this power of knowing what it needs can feel instead like too much, like a defect.

“Because I’m a physician and was accustomed to being a caregiver, I got used to denying my own needs in order to care for others—even when I was struggling. I literally cannot do that anymore. So when I think about friendship, I not only appreciate those friends who have responded and embraced my new abilities and limitations, I also think about my own role as a friend. Maybe I wasn’t an honest friend before my health changed. Maybe I was hiding more than I should have.”
–

I may not be able to do as much as your able-bodied friends.

Sometimes I can’t go out in public. I can’t get dressed up. I might need to cancel our hang last minute. I might need you to come midday because I’m too tired past 4pm. I might not be able to text you back in any timeframe. I might need you to leave after an hour.

Please don’t abandon me. Don’t assume my limitations. Don’t stop inviting me to things. Preface that you think it might be x, y, and z. Too far, too busy, too loud, too late, whatever the case. This is so helpful as it saves me from having to track that down. But allow me the dignity of making my own decisions.

“One of the most supportive things a friend can do is not be afraid to double text, and not read my sporadic communication as distance or disinterest. My capacity moves, sometimes quickly, and I drift in and out of conversation with it. I feel a lot less shame re-engaging when I know someone won’t be upset with me for the quiet stretches. I never want the people I love to feel unsure where they stand with me, but a steady back-and-forth just isn’t always something my body can give. Sometimes I don’t have the spoons to compose a full text, but I still want connection. Maybe that looks like sending a resource that made me think of you, a voice note, or a video about a topic you love. I especially love it when I can learn from my friends. Infodumps are my love language, always.”
–

Friendship with a disabled person requires believing what you cannot see.

My body can be hard to track. Even I struggle to follow its needs. Even I doubt it sometimes.

Most disabilities are dynamic. This means they change in severity and symptoms over time. I’ll have good days and bad days. One day I can take a twenty minute walk. Another I can’t leave my bed.

Most disabilities are invisible. Much of the time I appear well.

You might forget that I even have a disability. But I never forget.

“My most supportive friendships are the ones in which I don’t have to explain my access needs because they’re not only accepted without question, but also accounted for in any plans that are made. And I always strive to do the same for my friends, regardless of whether they identify as disabled. Far too often, I hesitate to be honest about my pain levels or how unwell I’m feeling, especially if it means canceling or rescheduling plans. I struggle with feelings of guilt and worries that I won’t be believed.”
–

To be chronically ill is to live in a body full of pain and limitation, while healthcare professionals, family, and strangers on the internet gaslight you at every turn. It would leave anyone in shambles. I’ve had to crawl back to baseline, back to trust in my body, my intuition.

Truly one of the greatest gifts my friends give me is their faith, their belief.

“I might look ‘fine’ doing one thing and then really struggle with something else that seems easier by everyday logic. But pain and capacity don’t always behave in a neat, common-sense way. There’s also a big difference between what I can technically push through and what it costs me afterward. The most meaningful support is usually the kind that lowers the pressure without making me feel like a burden. It means a lot when someone believes me about what my body is telling me and doesn’t make me over-explain.”
–

Knowing I have a friend on my side feels like I’m not showing up to this alone.

Friendship with a disabled person requires staying.

Sometimes I still get embarrassed when others care for me. If you ask if I’m okay. If you offer up a chair you noted in a place we just arrived. If you suggest we leave somewhere that’s suddenly quite loud.

It can be so scary to be vulnerable. To be exposed. But your awareness makes all the difference. True friendship can’t exist without being a safe space for each other. And every time I see you’re not judging me, I snuggle in a little deeper.

“The thing I look for in friendships are honest people, who have the values of ‘lifting one another up’ and don’t like to harm others to elevate themselves, who are kind, honest and don’t lie... and perhaps, most importantly, that I feel a sense of emotional safety with them, so I don’t feel the need to hold back and hide parts of myself (because I did that for most of my life, before I knew I was Autistic and ADHD).”
–

I know it can be a lot to love a disabled person. With it comes grief, heartache, guilt, and fear. A monster in a dark hallway that you might rather shut the door on.

It may make you question whether it’s worth it. Don’t be ashamed of that feeling.

Shame brings apathy.

Sometimes I feel it too about my own body.

It’s natural to want to take the easy way out, to choose the able-bodied friend who has no limitations.

But here’s the thing. We’ll all become disabled in this lifetime, if we’re blessed enough to continue evading death. Your disabled brethren will not abandon you when it comes for you too.

“Little acts of service are always the most meaningful to me. I get so fatigued from having to ask for the same things over and over. The friends who take a covid test without me asking make me want to cry. Friends who carry my bag without a second thought. Who take out my trash when they notice it looks full. It is less about the act itself and more about being known. But I want to emphasize that I have had to become okay with the friends who need me to ask, too. Not every friend can anticipate my needs. Not every friend needs to fully understand me. That has saved me a lot of energy. I don’t use my time trying to explain the hardest parts of my life to people who don’t have the capacity.”
–

Friendship with a disabled person requires a spirit of growth.

We can face these heavy emotions together. Disabled folks don’t often shy from vulnerability. On the other side is growth you may have never thought possible.

My body won’t allow stagnation of spirit. I wouldn’t survive it if I gave up. And I think many disabled people would agree, often the only way forward is through radical self-acceptance. If your body won’t heal, won’t conform to what the world demands of it, you’ve gotta get your mind right.

Most people don’t truly accept disabled people, don’t see us as equals. To be disabled is to peek behind the curtain and see the ugliness of the world.

“Something I wish my friends understood about my disability that they might not see, is the past trauma from living undiagnosed that greatly affects how I show up in the world. It’s only been about 5 years of the 36 years I’ve been alive, that I’ve been diagnosed, am learning about my disability, and am getting to know myself for the first time in a sense. I wish my friends understood how deep my rejection sensitivity goes, and the fears I still have of being rejected for showing up as my authentic self without masking, even a tiny bit.”
–

We won’t be able to relate if you’d rather stay in your comfortable place in the dark. My closest friends have an open mind and a soul that’s always striving to learn and be better. They believe me when I share what I’ve seen, even if unsightly.

“My best friend and I have both experienced disability, though never at the same time. We like to say that we shift back and forth, one of us gets to be the mess while the other one cleans up. I mean that literally and figuratively. I have a lot of friends who are supportive in their own ways, but nothing compares to the kind of understanding another disabled person can offer you. I don’t understand much about the universe, about karmic balance, though I can spend hours trying. If you believe that everything has a counterbalance, believe that she is mine.”
–

As the world prioritizes convenience and a frictionless existence, we have sacrificed our community. A world like this has no room for disabled bodies. It’s easier not to make accommodations for people. It’s easier to ghost that friend who needs something from you.

Disabled friendship gives us a glimpse into a beautiful future. It creates a depth of interdependence and an expansion like none other.

It shows us a world where care is prioritized.

We’re stronger together, but we’re also allowed to be weaker together. More vulnerable together. Because there are hands ready to hold you when your body finally asks for help.

Friendship with a disabled person requires imagining a world where no one is left behind.

A world like that doesn’t ask us to be less needy.
It asks us to finally need each other out loud.

I’d love to hear what disabled friendship looks like for you!

Leave a comment

Previous pieces I’ve written!

Content note: chronic illness, medical dismissal, emotional volatility

I’m feeling so fragile these days. Brittle.
I fear I might fracture from the slightest of movements.
Unsubstantial. My body is barely a form.

In 2023, a doctor wrote a note in my chart, “Someone should tell the patient they have mild anemia.” No one told me.

I’ve been crying more than normal lately. And not just sad tears.
I’ve laughed until crying more in the last two months than I perhaps ever have in my life before.
So if you’d like to also be a silly goose, may I recommend reducing your iron intake?

My emotions have been whiplashing me from ecstasy to hopelessness.
My heart has been slamming against my chest attempting to escape every time I get out of bed.
I try to complete a thought but I’m trudging through the muck. And when I do complete a thought, my decisions are impulsive and impossible to track.

The feeling of running on dregs has been real this whole time.
Why does it fill me with glee? It’s real! It’s real! My suffering is real!

There’s a relief in something being wrong enough that you will finally be cared for.

Does anyone else dream of simple explanations?

I feel justified when, for example, I find out I’m severely iron deficient. Versus being diagnosed with hypermobile Ehlers-Danlos or POTS.

The simple are easy for folks to comprehend.
Even if only a doctor really understands the facts.
They’re interpretable. Their grandpa takes meds for that. Their co-worker had that once.

Complex chronic illness is an enigma. You accept being misunderstood. You accept not being believed.
You make up cute little ways to explain your abnormal body to laymen: I’m bendy! My blood doesn’t circulate well!
You expect the doubt. But that doesn’t make it ok.

Why do we need to see something with our eyes to believe it?
Haven’t we yet learned our eyes deceive us?

The medical system is a culture of faithlessness.
They’re suspicious when you ask to be tended to.
Is my performance of illness not enough?
I frown to make sure my face is a face of pain. I slump my shoulders so you can see the fatigue written on my body.

I whimper like an animal caught in a trap.

Now, when I have nothing left to give, all I can do is wait. The doctors still don’t believe me.
So I’ll give my body what it needs and pray it does the rest. My flesh cries out for a savior. My cells fall to their knees at the feet of the iron supplement.

It’s a helpless feeling or it’s a resignation. That’s usually the choice when facing chronic illness.
But even if peace right now is hard won, I will chase it. I will grapple for it. I will try to relax my aching spasming muscles.

This spectral body deserves one person to believe it. And I can be that.

Check out some of my previous essays:

I watched a video recently warning about the dangers of our frictionless lives. It talks about how convenience is making us unresilient and detached from meaning.

I found myself nodding along, but also thinking how I personally couldn’t relate.

Because as a disabled person, life has never been frictionless for me. The world has always been full of resistance, barriers, glitches, waiting, workarounds. I’ve never been in danger of losing my resilience. I’ve had to consistently build it just to survive.

The Gospel of Optimization

It’s not a secret our modern culture is obsessed with minimizing friction. It’s in the Amazon same day shipping, the food delivery apps, the buy now pay later schemes, the AI tools. It’s in the way we ghost that friend or person we were dating to avoid emotional friction.

Our feeds are curated, our algorithms filtered to avoid opposing viewpoints. Even our vulnerability is edited online so authenticity becomes polished and low-risk.

It seems this hyper-convenience culture is training us to see efficiency as a moral virtue and friction as failure. Every delay or limitation becomes intolerable. Something or someone to be streamlined or removed.

In Byung-Chul Han’s book The Burnout Society, he talks about the shift from living in Foucault’s “disciplinary society” to our current “achievement society.”1 How we’ve moved from being ruled by external authority to being self-directing and self-optimizing.

We no longer live in a world that tells us “you must obey.”
We now live in a world that tells us “you can become anything.”

This self-ruling feels like freedom. No one is making you track your steps, heal your trauma faster, monetize your hobby, turn your pain into content, fix your mindset. But you feel like you should.

This is where the violence lives.

If everything is possible, then any limitation becomes personal failure.

Fatigue becomes a mindset problem. Pain becomes a resilience problem. Limits become a motivation problem. Rest becomes laziness. Healing becomes a project.

And if you can’t optimize your way out?
You turn your striving into self-attack.

“The project turns out to be a projectile that the achievement-subject is aiming at itself.”
— Byung-Chul Han The Burnout Society

When “Healthy” Means Employable

Somewhere along the way, “healthy” stopped meaning “feeling well” and started meaning “able to work.”

In Health Communism, and write about how those who cannot work are sorted into the “surplus population,” because they no longer fit the productivity equation.2

It’s the stark reality that our disability systems aren’t really built around care. They’re built around proof. Proof that you’re sick enough. Proof that you deserve help.

The worker is taught to fear becoming surplus. And so we police one another.

“It is not necessarily the case that we are all sick. But none of us is well. The truth of the distinction that capitalist states draw in their demarcations of worker/surplus is that in the eyes of capital, we are all surplus.”
— Beatrice Adler-Bolton and Artie Vierkant Health Communism

The Politics of Inconvenience

As our tolerance shrinks, delays outrage us. The more our systems promise effortless flow, the more rage and suspicion are directed toward anyone who disrupts it, including the disabled, chronically ill, poor, and elderly.

In a culture where the highest virtue is convenience, disabled people become the scapegoats for inconvenience itself. The people who require accommodation are reframed as the cause of the problem rather than evidence that the system is broken.

This suspicion shows up in the fraud rhetoric around disability support, framing benefit claimants as “fakers” or “undeserving,” despite official audits showing that fraud represents a very small percentage of disability overpayments.3

The truth is myself, as many disabled people, expend an extraordinary effort appearing “well” enough to survive systems that are not designed to support people. They are designed to doubt them, to assume scarcity.

The height of the pandemic brought collective rage to a new level. Anti-masking rhetoric framed inconvenience as oppression. When the cost of that convenience was suffered disproportionately by disabled, elderly, and poor communities.

Many disability advocates have framed the “return to normal” push as organized abandonment.4 During lockdown, non-disabled society briefly experienced what disabled people have long known: restriction, planning, vulnerability, bureaucratic exhaustion. In our rush to restore normalcy, we left intact the very structures that made disabled and elderly people disposable in the first place.

Our bodies expose the lie of optimization culture: control is temporary. Health is fleeting and unpredictable. Independence is a myth we perform until it breaks. And for a society allergic to friction, that reminder is intolerable. The “frictionless” world is built around our exclusion. Convenience for some at the expense of others.

“Disabled people are not disposable. We are your feared present and your inevitable future.”5
— Mia Mingus

Learning to Stay With Friction

While many slide into a softness they fear, I wonder what are the practices that can give us a handhold. Perhaps a hand to hold?

We cling to these enhancements in an effort to outrun the feeling that we are running out of time. We maximize and we streamline to make the “boring” parts of life move faster.

But when do we move so fast we can no longer slow down for any part of our lives?

When we ghost friends instead of face the work of repairing, when we scroll in dissociation instead of sit with discomfort — we practice the same logic that abandons disabled bodies. If friction is failure, then so is need. If inconvenience is intolerable, then so is dependency.

We’ve come to see care as a cost, not a value. But care takes time and interdependence is strength. Slowness is not a moral failure.

I have never expected ease. Early on, the world slammed into me and I’ve been negotiating that impact ever since. I’ve felt jealousy watching others move through the world with seeming effortlessness. I craved to step out of the limitations of my own body and mind.

Many of us have been shaped by the friction of our lives. We’ve learned how to live inside constraint without turning it into self-hatred.

And maybe that’s what we’re actually starved for.

Not endless refinement.
Not the fantasy of frictionless.

But care.

Care that takes time and refuses to apologize for it.
Care that assumes we belong to each other.

As Leah Lakshmi Piepzna-Samarasinha writes in Care Work: “What does it mean to shift our ideas of access and care … from an individual chore, an unfortunate cost of having an unfortunate body, to a collective responsibility that’s maybe even deeply joyful?”6

Maybe resilience isn’t built by removing friction.
Maybe it’s built by being held through it.

Maybe the people this system calls inconvenient have been practicing the skills we’ll all need.

If your body stopped being “useful” tomorrow, would this system still know how to value you?
How has that belief shaped the way you treat yourself or others?

Leave a comment

Read some of my previous work:

Before I start, I want to acknowledge that my experience of autism is shaped by privilege. By being white and by having the kind of autism that the world sometimes rewards for its ability to mimic. My masking has protected me in ways that others are never afforded. The systems that dismissed my pain are the same ones that punish, criminalize, or institutionalize people of color and those whose autism is more visible.

Most people will see my autism through the lens of the DSM criteria, whether they know that criteria or not.
They see the parts I’m unable to mask fully.
They see the places where society tried to mold me into a non-autistic person through shame and fear of being othered.
The places where I’ve cracked from faking too long.
The places where my body might ache forever from pretending I’m ok.

But they don’t see my autism.

They don’t see what I suffer inside this body every time I put on a smile.
The overwhelm of the world around me, of taking in far too much input.
A world that’s too loud, too bright, moving too fast.
A ravaged nervous system, frayed so thin that it’s broken my body down into bedridden chronic illness.

I was just a kid when I first shied from touch that felt like pain.
When every long car ride led to unending nausea.
When the sun on my skin felt like it was scalding me.
When my innate protection of masking my autistic traits began to feel like fraud. Like no one in the world really knew me and there was no one I could trust.
When I started to think my meltdowns were proof of a monster that lived inside me.

They don’t see the trauma of growing up being denied embodiment.
At every juncture, when I tried to explain how I felt in my body, I was told I was wrong, dismissed as a drama queen, scolded for being a complainer.
Each time I was opposed, I drew further from who I was.
They must be right. I must be wrong.
So all I could do was tuck those parts away deep inside of me. And push myself harder to keep up.

I learned to study faces like textbooks.
I learned to laugh half a second late so it would sound natural.
I learned to pretend confusion was arrogance, and silence was peace.
I practiced smiling in the mirror.
I stayed alert for any possible danger.

What accompanied was a disconnection so complete I fear it might take me the rest of my life to come back to myself.
I was ashamed that I couldn’t stomach what others could.
I was vicious to my body and my mind, a whip of unkind words always at the ready:
What’s wrong with you?
Why can’t you be normal?
Why are you such a failure?
You’re broken.

I only found my own autism a few years ago.
It turns out it was always there. Coloring every picture.
But without those hues in full view, my world felt monochromatic.
A saturation only from the outside looking in.

I’m still learning to hear my body without fear.
To listen when it says “enough.”
To trust that my sensitivity was never the problem. It was the map back to myself.

If you’re reading this and you’ve always felt strange in your skin, I want you to know you were never broken.
You were surviving a world that couldn’t read your language.
You were always whole, even when they told you otherwise.

The harm is never just personal. It’s cultural.
It lives in our systems, our schools, our families.

But when the world doesn’t let autistic people speak their truths, we’re shoved even farther into the depths.
A place late-diagnosed folks have been their whole life.
I promise you that.

Under the glow of the gaslights, where others have done to us so much until we do it solely to ourselves without assistance.
We’re quick to apologize, to people please.
Yes, you’re right.
I don’t look autistic. I must not be.

But I am. I always was.

What does your autism feel like?

Check out previous pieces of mine:

I’ve been trying to do less for years now. And maybe that’s the problem, the “trying” part.

Allowing myself to rest is still incredibly difficult. Something I know many of us struggle with.

The momentum of the world these days is so amped up, it can feel impossible to just stop, like being left behind. It can cause whiplash that feels sickening in its guilt and shame.

I’ve always felt my Capricorn sensibilities strongly. I relate deeply to imagery of the goat climbing up that mountain towards the same goal forever. It’s a blessing and a curse, because it’s this intrinsic motivation that has made being my own boss as a freelance artist possible. But it also means I struggle to rest, I struggle to take vacations, to turn off my work brain.

Proof of this is last year. While moving countries twice and care-taking for my partner undergoing a bone marrow transplant, I wrote 32 Substack essays, released my debut album, and pumped out 2-3 pieces of content on Instagram and TikTok every week. All while under debilitating chronic pain and autistic burnout.

When November 2025 hit, I crumbled. I spent the first month and a half of my yearly creative hibernation break unable to leave the house, barely able to move from my chair or bed, reading 28 romantasy books. I’ve always had sensory issues, but my senses were on high alert to a degree I had not experienced before. Scents, sounds, light, and the feeling of clothing against my skin were unbearable. It was frightening.

I’m still slowly clawing my way back to baseline now, 3 months later. I stopped consuming any type of video content for the first 3 weeks of that break, no TV, no social media. Not like a digital detox, but simply because the sensory impact of moving images was too much for me to bear. I kept reading as my main activity, and this helped me to regain a small footing.

But I’m still in it. Writing right now is hard. I’m easing in, my friends.

So I thought I’d share my goals and intentions for the year. I consider these every year around January 1st. My categories are professional goals, personal goals, intentions, and mantras. I start by freewriting some loose thoughts, thinking about the year past, what worked and what didn’t, what I want more of, what’s calling to me. A gut check.

I knew right away that I wanted to do much less this year:

January 1, 2026
Here’s what I know. I simultaneously did way too much in 2025 while at the same time always feeling like I wasn’t doing enough. That needs to stop.

Last year I started a 5 year journal, and this year it’s been so fun to see what I wrote one year ago on the same day. The first day of the year was already enlightening. I had just written my goals and intentions when I took a peek at January 1st, 2025. My jaw dropped. It was almost phrase-for-phrase the conclusions I had come to this year: that I consistently gaslight myself into thinking I’m not doing enough, while simultaneously doing way too much.

Some lessons need to be learned many times over many years, huh?

So I want my goals for this year to be much less, much easier, more focused and simplified.

With that knowledge, I cut back my professional goals in a way I have never done before, only choosing two focuses for the year ahead: Substack and Music. A big energy and time drain from last year is notably being dropped: Instagram and TikTok!

Professional Goals

Substack

• 2-3 Essays per month February - October

• 2-3 Conversations Behind the veil

• 4,000 Subscribers

• 40 Paid Subscribers

Music

• Complete (my part of) Album 02 (ie. what I can do myself: recording and editing final vocals, finalizing lyrics and songwriting)

• Begin working on my Substack release plan (a secret project that I can’t wait to share!)

My personal goals this year center mainly around things I want to do just for myself, like hobbies that I don’t share online and health adjacent activities. My thought is that if I give myself ideas of activities I can do that I find enriching and relaxing, perhaps I can replace some of my workaholic energy with these on my to do list instead.

Personal Goals

More Hobbies!

• Painting and watercoloring

• Read 80 books

• Puzzles

• Letter writing

• Photography

• Field journaling

• Dreaming up cute outfits

• Bird watching

• Playing piano and singing

Weekly Finance Check-in

Meditation, Red Light Therapy, Somatic Release 4-5x a week

Daily Journaling

Physical Therapy & Walking 4-5x a week

More Nature Time

My intentions this year feel like they continue seamlessly from where I’ve been journeying for a while now. The past few years felt like first I had to get my mind right. I was coming from a lifetime of berating and barraging and putting myself down mentally. My inner world frankly scared me as a teenager and into my twenties. I felt cursed to live inside my own mind.

But as I’ve begun to heal these mental wounds, as I’ve learned to mother myself, accept myself, and hype myself up in my own mind, I’ve been slowly coming to the conclusion that it’s time to start getting my body involved too.

My focus is swinging towards somatic work, nervous system work, letting go of control within my body, letting go of expectation. Less tension and silencing. More sighing, moving when I need to move, leaving when I need to leave.

Intentions

To Mother Myself

• To love myself without judgement.

• To allow myself the space and support to feel whatever I need to feel.

• To speak up for my needs.

To Show My Body It’s Safe Now

• To allow my body movement/stimming/sighing/shaking/cocooning/snuggling/resting.

• To let go of sexual expectations.

• To find my own pleasure in a space of peace, safety, relaxation.

To Let Go of Control

• There is pain, but I am not in pain.

Mantras

My body is safe now. I am safe now.

I am not in control.

I love my body exactly as it is.

I want to be in my body even when it’s hurting.

There is pain, but I am not in pain. (this one is adapted from How To Be Sick)

Something I’ve put into practice for many years is the magic of tiny changes over time. Even 3 minutes a day will change the trajectory of your life. Making your goals feel easy, even on hard days, is a huge life hack. It means you don’t ever feel like you’ve failed, and that makes continuing so much easier. I wrote a whole essay about this!

The thing about growth is, it isn’t linear. It’s an ebb and flow. A zigzag. A circle. So it isn’t really surprising that I’ve been striving for the same ease for many years now.

This year feels different though. I feel more flexible than I have before. Like if something I wrote on January 1st doesn’t feel right by May 5th, I’m willing to change it. I also feel tired. So tired. And in that exhaustion, more willing to say no to things that don’t fit my professional goals this year. I feel more certain that I know what I want. I trust myself more. And in that trust, I’m less likely to be pulled off my path by something that may be shiny, enticing, but ultimately unaligned.

Either way, whether I’m writing the same thing January 1st, 2027 or whether I’ve finally learned to cut back, I know the journey has been worth it. That’s the whole part. The only part. That’s where we live. Where we learn. Where we double back to learn again.

What has your body been asking for that your mind keeps negotiating with?

Leave a comment

Read some previous pieces of mine:

In the eighth edition of Conversations Behind the veil, I sat down with Jesse Meadows, writer, researcher, and the voice behind Sluggish, a newsletter about disability and what happens when we stop trying to keep pace with a world that was never built for us.

Jesse writes with precision and curiosity about the politics of mental illness and the cultural forces that mold our minds. In Sluggish, they reclaim a word historically used to shame slowness and laziness, reframing it instead as a radical response to disability and embodied limits.

This series is a space for honest, unguarded dialogue with fellow artists and writers. We explore the unseen: chronic illness, creativity, queerness, neurodivergence, and the work of staying whole in a fractured world.

Content Note: This conversation includes discussion of chronic illness, disability, medical trauma, and experiences of misdiagnosis.

vōx: Jesse! I am so delighted to have this chat with you. Your substack is one of my favorites. The way you research and share information so it’s easily digestible, not to mention enjoyable, is often tough to find in the academic and scientific spaces.

I recently watched your video in your post POTS is a real trend, and it has a long history. In it, you discuss the history of POTS which is so fascinating and wild (I had no idea it can be traced back to the 1800s!). You also talk about a neurologist currently peddling a book on overdiagnosis, claiming conditions like POTS and long COVID are psychosomatic.

Before the Diagnosis, There Was the Body

Firstly, hello fellow POTS brethren. I can trace mild symptoms of my POTS back to when I was a teenager. I believe it was a really bad car accident that triggered the beginning of mine. Because around that time I started having my very first gastrointestinal problems, and I remember going to events and concerts and having trouble standing for long periods like I used to, sometimes becoming faint.

I also remember being diagnosed with anxiety as a teen but being totally confused at why oftentimes my brain didn’t have anxious thoughts running through it but my body had anxious symptoms. Of course, even if partially this was POTS, it was definitely compounded by my undiagnosed autism. Going through the world not understanding socially a lot of what’s going on while also having overwhelming sensory experiences is stressful!

And then sometime during the early COVID years mine became disabling. I’m not entirely sure whether it was from something viral or if it was when I had surgery on my torn meniscus. Either way, suddenly I had moderate to severe POTS, which I attempted to ignore for years burning myself out further.

It didn’t help that I saw dozens of doctors over those years, none of whom would diagnose me with anything. I had to take things into my own hands to manage the symptoms myself as they became unbearable.

This spring is when I finally got a diagnosis, both POTS and hEDS. It was such a relief to stop gaslighting myself.

In your video, you talk about how this neurologist is arguing in her book that diagnosis can make someone think they’re a sick person. But in my experience, being an undiagnosed sick person for 20 years, I already felt “sick.” I felt totally broken, worthless, unsure why I couldn’t keep up with the world. I felt totally disconnected from my own body, using the justification of a non-diagnosis to ignore everything and push myself harder.

It’s been a huge relief to realize that I’m not broken. That genetics were stacked against me. That I wasn’t working with the same body as most of my peers. Now I know how to be more gentle and find compassion for myself, how to take care of this body.

I wonder what your experience has been in relation to your own diagnoses? Have they felt empowering or limiting?

If you could go back to your pre-diagnosis self, what would you tell them?

Jesse Meadows: Thanks so much for having me! And for reading my work so closely, I am honored!

I’ve actually had both kinds of experiences with diagnoses, and even with the same diagnosis, it’s shifted over time. In my late 20’s, I was diagnosed with bipolar 2, and at first it felt empowering, like I had an answer and a plan, but over time, that plan didn’t end up helping me — literally, in the sense that the meds just did not work, but also in the sense that it didn’t help me understand my life better, because it wasn’t accurate.

Being able to take off the bipolar lens and put on an autistic one was really huge for me. I definitely relate to that feeling of relief you describe, and the way a diagnosis can allow you to re-story your life. I think the amount of agency we have in the process of diagnosis can make the difference in whether it’s an empowering or limiting experience. Is it a collaborative effort that you get to participate in, where your knowledge of yourself is valued and respected, or is it a label that’s placed on you, regardless what you thought about it?

I’m a hyper-curious person and I’m always researching, so I tend to show up in the doctor’s office already knowing a lot and having a lot of informed questions, which I have realized over the years that many doctors really do not appreciate! That never made sense to me, because logically I thought that more information would help them help me better, but actually it just annoyed them.

I went for a second opinion a couple years after getting dxed bipolar, and I showed up to the appointment with ten pages of notes and reasons why I thought I was actually autistic instead. The psychologist basically ignored everything I had written and a lot of what I said, re-diagnosed me bipolar, and added an ‘unspecified personality disorder’. The report she wrote up about me was so off, my partner said it sounded like she had gotten her notes mixed up with another patient. To be fair, every session I had with her, she seemed super stressed and distracted.

To me these kinds of bad experiences with diagnosis are a symptom of medicine being a for-profit enterprise. Most doctors have thousands of patients on their rolls and they’re pushed to see as many per day as they can, to the point that it’s not humanly possible for them to remember who their patients are and have an actually healing relationship with them. There’s no time for care, or really getting to know patients.

What Naming the Thing Makes Possible

My experience with POTS was totally different — it was actually a good one, which I realize is very much not the norm, since it’s so rare to find a doctor who knows about dysautonomia (even though, in the Covid era, it really shouldn’t be! It’s so common!).

I’ve been super lucky to find a really great GP who shares my curiosity and doesn’t get weird when I tell her I’ve been researching, but actually sends me papers to read, which I love. I’d been telling her about a bunch of seemingly unrelated symptoms I was having over the course of a couple years, and then last fall I started getting full-body hives anytime I exercised, then really severe, chronic headaches, which, long story short (and after tests for more serious stuff came back fine), led me to POTS.

Beta-blocker + sodium + supine breaks have basically fixed my headaches, and I’ve been trying LDN for a few months, which I think has made a huge difference in my fatigue and chronic pain in general. These are things I never would have figured out without the diagnosis, which is why that book made me so mad, because it claims that the POTS diagnosis has not improved anyone’s health at all.

It’s just complete bullshit, but it’s an example of a really popular strain of conservative ‘overmedicalization’ discourse right now that views psychiatric and chronic diagnoses (and in particular, autism and adhd), as totally negative and damaging to people’s lives over time. And I do want to acknowledge that diagnoses can cause harm sometimes, but I think this idea that the label is the whole entire problem and we would be fine if we just stopped worrying about it comes from a total misunderstanding of how ableism precedes the act of labelling, and how many of us experience disability for years before we ever get diagnosed with anything.

I think I would probably tell my pre-diagnosis self that they weren’t being dramatic and they deserve care. I really neglected my health for a very long time and just tried to suck it up and push through everything, and I think I probably could have avoided the worst of my burn-out and shame if I’d come to understand myself as disabled sooner.

vōx: Oh my gosh, sodium and positional changes like having my feet up so blood doesn’t pool while sitting have totally changed my life as well. I couldn’t agree more.

I also really feel for you in the fight to get an autism diagnosis. It’s such a shame that it’s so common to have an incorrect or auxiliary diagnosis before learning the truth.

I tried so many different therapies for my anxiety and depression when I was younger, but none of them worked until I saw them through the lens of autism. Sure, I had some social anxiety, but most of my anxiety came from ignoring my sensory distress. Once I started protecting myself from that, whether through earplugs or sunglasses or simply not going to big loud events, my anxiety overall lowered considerably.

And once I knew I was autistic, I stopped shaming myself for “not keeping up” with my peers, feeling like a fraud to my friends (from autistic masking), and seeming to not enjoy normal things like parties and festivals and loud bars. The result was self-compassion and self-understanding, which led me down a path toward healing my struggles with self-worth and learning to love myself.

Jesse: Being able to develop that self-understanding is so important! Diagnoses definitely have this dual nature where they can help you understand yourself better, or they can obscure what’s really going on, depending how well they fit. I think it’s such a human impulse to want to find a name for a thing, and it’s really important that we have shorthand terms to be able to discuss complicated experiences. I guess the key for me is just keeping in mind that these diagnoses are abstracted categories that are always going to oversimplify some things, so I try to hold them a bit lightly.

From Detour to Metamorphosis

vōx: In your recent post ADHD Consciousness, Brain Wrinkles, and Life-world Disruption, a roundup of research papers, I was incredibly moved by The Metamorphosis: The Nature of Chronic Illness and Its Challenge to Medicine by S. Kay Toombs. In it, as you state, Toombs discusses “how chronic illness is fundamentally different from acute illness, and what that means for the doctor-patient relationship.”

I never would have guessed that topic could move me to tears. But the piece overall is so poignant for those with chronic illness and medical trauma.

I was really struck by a quote in the piece from R. F. Murphy – “Nothing is quite so isolating as the knowledge that when one hurts, nobody else feels the pain; that when one sickens, the malaise is a private affair; and that when one dies, the world continues with barely a ripple.”

Toombs talks about how important it is that the chronically ill patient doesn’t feel abandoned by the medical system due to the fact that they are “incurable.” This is a huge part of my own medical trauma and internalized ableism that I’ve grappled with these past few years.

Societally we do see illness usually as something temporary, something to be “healed.” People who are sick are expected to be fighters, never giving up on the cure mindset. I just wrote a whole piece on “warrior” language and how this in itself can be problematic. It’s exhausting and demoralizing when you live in a body that cannot be fixed. And if you live forever in this fighting against sickness mindset, it can really carve you into pieces as a chronically ill person. Your body becomes a battleground, and in this you can’t find peace or love for your whole self, only the parts of you that “aren’t sick.”

I’ve been on a journey to love my body even when it’s hurting, to love my body exactly as it is. It’s hard! It goes against our culture. It can look like giving up, but it really isn’t.

We don’t often talk about the ways chronic illness changes who a person is fundamentally. Toombs really put language to this transformation. The body becoming something new, something I have to live alongside. It made me wonder: if acute illness is a detour and chronic illness is a metamorphosis, then what does it mean to live well inside that metamorphosis?

What do you think our culture would look like if we shifted from cure-centric stories to stories of accommodation, coexistence, or even reverence for disabled bodies?

Jesse: I am also on that journey, it’s so hard. My whole thing with Sluggish is embracing slowness — not in like a cottage core slow-living way, but in a disabled, falling-behind, crip failure way. It’s something I’ve been really ashamed of and tried so hard to compensate for and mask most of my life, and I just can’t do it anymore. I’m slow, I take forever to do things that other people find easy and quick, and I just need more time.

Living well inside the metamorphosis is such a good question, I don’t know if I’ve figured out an answer! For me I think it’s involved unhooking myself from a concept of linear time, and not trying to organize my life around steady progress toward a goal. Understanding life in terms of cycles and spirals instead of straight upward lines. Remembering that every ending is also a beginning.

I think living well for me also involves obsession — like I need a thing to be so obsessed with that I can’t do anything else, that’s where I get all my joi de vivre. Usually it’s an intellectual interest, so I’m always reading about some niche thing and then writing about it online. But with POTS I’ve become super heat intolerant, which meant last summer was like fatigue fog city for me. I was stuck on the couch next to the A/C everyday, but I also couldn’t really read much through my mashed potato brain, so I had to find a new obsession I could do supine that didn’t involve too much thinking. I taught myself how to crochet off YouTube and honestly that saved me from falling into despair, and now I can’t stop.

I guess chronic illness is teaching me how to pivot, and my limits are redirecting me to places I hadn’t thought of going before.

I think that capitalism creates a culture where everyone hates the idea of a limit. We’re supposed to think anything is possible, there are no barriers to success but our ‘self-limiting beliefs’, or whatever. This is because it’s a system built on the farce of endless accumulation, and that’s an idea that I think contributes so much to ableism. There’s this fear of limitation — people don’t want to accept that it’s just the reality of being in a mortal body, or of being alive at all. Limits are containers and boundaries, but they’re also scaffolding and support.

I think about this in an artistic sense a lot, because to me limits are crucial for creativity and meaning. It’s the difference between an AI-generated image and a hand-made one — unlimited possibility churns out a kind of sterile and soulless image, whereas one made by hand has flaws, and those flaws are what make the image interesting. The limit of what you can do with the materials you have in front of you becomes a container for creation, and rather than thinking of it as holding the artist back, we could think of it as a kind of support that makes the art possible.

And this is not to glorify suffering or impairment as like always teaching us a valuable lesson or whatever, a lot of times pain is just pain and it fucking hurts. A limit can genuinely just suck sometimes, but it can also open up a portal to a new place, new ideas, and new kinds of wisdom. Disabled people have knowledge and things to teach, and that’s something we could revere as a culture if we weren’t so averse to reckoning with limitation.

Johanna Hedva writes that ableism is a defense against the frightening truth that our bodies will break down and eventually die, and I think cure-centric stories are popular because they sooth that fear — the idea that you can fight and overcome any ailment is comforting, even if it’s not true. I think to make a society that supports disabled people, we of course would have to unlink our worth from our productivity, but we would also have to stop running from grief and loss and limitation.

But I don’t know, I’m still figuring it out, and I still feel shame and get frustrated with my body all the time. What’s helped me the most is just surrounding myself with other disabled people who get it, who I don’t have to explain myself to, and who aren’t going to think I’m a bad person if I disappear for a while or take forever to do something or show up late or cancel last-minute, because they’re also doing all that too, and we have a lot of grace for each other.

vōx: The shame of feeling like you can’t keep up with the pace of the world is so real. I’ve really been struggling to disconnect my value from a capitalist mindset of output. But I still feel broken sometimes for not getting my to do list done on the timeline I set for myself.

I love the idea of embracing non-linear time. To me that feels like being more present. I’d be able to move with the flow of the seasonality of chronic illness and let go of my rigidities.

What you said about limits being scaffolding struck me. Maybe that’s what the cocoon of metamorphosis is. A boundary that holds the transformation. I keep wanting to break out of it, but maybe the structure itself is what allows something new to form.

I find that in creative work too, the boundaries of my body have become part of the art. Honestly, I don’t know if I would have explored writing on Substack without the limitations of my body pushing me from my previous career as a musician. But through those limits, I’ve discovered a new expression here that’s truly changed my life.

I’m grateful for conversations like this, because they remind me that maybe living well inside the metamorphosis isn’t something we figure out alone. Maybe it’s something we learn from witnessing each other do it.

Jesse: Yeah, I don’t think we figure out much alone! I love how the internet allows me to tap into other people’s heads and learn about experiences I never would have otherwise. I’ve learned so much about myself by reading other people’s writing online and being like, wait, I feel that too, that happens to me, “I have never had a unique experience” (as they say on TikTok), and honestly, thank god for that!!

I come back to the theme of non-linearity over and over again, because I think it’s such a core aspect of neurodivergent experience, but it’s also huge for anyone who’s chronically ill, or exists outside the dominant norm in other ways. Disabled theorists call it crip time, in queer theory there’s the concept of ‘chrononormativity’, Rasheedah Phillips put out a book last year on how the construct of linear time has been shaped by racism and colonization — she actually calls writing ‘time manipulation’, which I think about a lot.

People find stuff I wrote years ago when I was a different person in a different time, but they experience that now, because I put it into writing and sort of froze it in time. It’s like we leave little pieces of ourselves for other people to find in the future.

Care Beyond Cure

vōx: It’s beautiful and so non-linear that whenever people discover our work, it’s reborn. It’s new again through someone else’s life. That kind of non-linear witnessing feels like a form of care in itself.

If the goal of medicine with chronic illness is “preserving integrity of the person,” do you think medicine as it’s currently practiced is even capable of that? Or is it something we mostly find outside of medicine, in art, community, and self-invention?

Jesse: It’s hard to preserve anyone’s integrity when medicine is designed to maximize shareholder value! I think only truly socialized medicine could do that. Chronic illness is complicated and caring for it requires a lot of time, there’s so much tracking and trial and error and especially when you have multiple overlapping conditions, it can be so individual and specific, you can’t get good care in a 20-minute appointment.

Toombs writes in that essay that doctors need to not just treat the illness, but talk to the patient about how the illness is affecting their lives, and to act as a confidant and advisor that helps them integrate it, but I’m not sure this is a big part of the job description for most doctors, at least in the US, and again I would contribute that to just straight-up lack of time, and the structure of healthcare being designed to increase profit rather than improve health.

I always wonder what medicine would be like if it was still an art that was practiced by a healer in your community, someone you had a genuine personal relationship with, not a professional separated from you by institutions and elite credentials. Barbara Ehrenreich and Deirdre English wrote this interesting pamphlet in the 70’s called Witches, Midwives, and Nurses that traced the history of Western medicine as a hostile takeover by upper-class men — what used to be an art practiced by women-healers who learned through passing down knowledge was made into a profession that required years of expensive training in universities, which then, of course, women were legally locked out of.

This was bad for the poor, who got their medical care from healers and doulas in their communities, and it was bad for medicine, because it stripped the practice of its more holistic nature, something that was embedded in the community and not above it in an ivory tower somewhere.

We know that the doctor-patient relationship has healing qualities in itself, but it’s almost impossible now to have a genuine relationship with a doctor because of how medicine has been professionalized and turned into an industry. So many of us end up with these really hostile, antagonistic relationships with doctors, where they’re essentially acting as gatekeepers that we have to haggle with to get the resources we need. I want to believe that most people get into medicine because they’re genuinely interested in it and want to help, so health capitalism is really a shit deal for doctors’ integrity too!

I think there’s definitely an existential aspect to chronic illness that a medicine which strictly focuses on pathology can’t really treat. I’ve found acupuncture really helpful in the past, even though there’s not really any good biological proof for it. I see it as a kind of care ritual, and maybe that ritual, like the experience of a good doctor-patient relationship, has healing qualities.

I find a lot of healing in making stuff, though, so maybe I’m biased towards art in that way. It’s also the closest I get to a spiritual experience, so I can’t really live without a creative outlet, which is why I think crochet has been so important to me this year. It’s really scary as a writer to have days and weeks where you can’t think — it’s a real threat to preserving my integrity as a person!

vōx: All of us with chronic illness have experienced firsthand how medicine in the US is treated as an industry rather than a public service. The only positive experiences I’ve had with doctors in the US have involved private specialized appointments where the cost is out of pocket and astronomical. Even more proof that the solution cannot exist within our current profit-driven systems.

I’m really moved by how you describe creativity and ritual as forms of healing. It makes me think that maybe art is medicine’s forgotten sibling. Both are ways of touching the ineffable, of making meaning out of pain.

Thank you so much for sharing this space and conversation with me, Jesse. It’s been such a grounding and inspiring exchange. Before we finish, I’d love to know what’s been bringing you joy lately? And is there anything else you’d like to share?

Jesse: Thank you for inviting me, your questions have been so thoughtful and generative!

Lately I’ve been learning how to bake, which I always thought was really hard for some reason so I never tried, but it’s actually not. I think yeast and fermentation in general is so creepy and cool, I love how it’s like a science experiment you get to eat at the end. I get a lot of joy out of cooking for people. I’ve also been loving really repetitive crafts, and I’m getting into knitting. The rhythm is so nice, it puts me in flow immediately. And I’ve been going to the library! My favorite place!

Check Out Previous Conversations Behind the veil:

We’ve all been there. You disclose your illness to a friend or a family member, and their first response is to tell you how brave you are, how much of a fighter you are, how you’re going to beat this.

When someone calls a sick person a “warrior” I feel two things: incredibly tired and painfully boxed-in. It’s like my body is now a stage prop for other people’s need to see courage. It’s like I’ve taken a bullet for them, my sickness proof that it won’t come for them.

From the beginning, sickness has been talked about like a battle. For centuries, people saw it as a test of faith, purity, or strength. In 1623, while seriously ill, the poet John Donne wrote Devotions upon Emergent Occasions. He described his fever as both an enemy and a teacher, the body under attack, the soul at war.1 Long before we understood germs or medicine, disease was a force to be resisted or repelled.

When modern science replaced the divine with biology, the metaphors didn’t disappear, they simply shifted. In the nineteenth century, tuberculosis was called “the romantic disease par excellence,”2 a sickness thought to reveal sensitivity and artistic depth. Illness was no longer a moral battle for the soul, but a symbol of beauty and meaning. By the twentieth century, as medicine grew more sure of itself, that softness hardened again into conflict. Cancer replaced tuberculosis as the new shadowed enemy.

“To describe a phenomenon as a cancer is an incitement to violence. The use of cancer in political discourse encourages fatalism and justifies ‘severe’ measures.”
— Susan Sontag, Illness as Metaphor

In 1971, U.S. President Richard Nixon signed the National Cancer Act, declaring what would soon be called a “war on cancer.” Even though he never used those exact words, the idea stuck. Research, fundraising, and survival stories began to borrow the language of combat: battles, victories, losses, heroes. A medical problem turned into a moral one.

“Congress is totally committed to provide the funds that are necessary, whatever is necessary, for the conquest of cancer,” Nixon declared, and with that, the disease became an enemy to defeat.3

In 1978, Susan Sontag published Illness as Metaphor, warning that these words don’t just describe illness, they shape how we see it. When sickness becomes a fight, survival starts to look like virtue. And those who die, or simply stop fighting, are seen as giving up. It’s a logic that punishes the body for doing what bodies inevitably do: change, weaken, and end.4

“Nothing is more punitive than to give a disease a meaning—that meaning being invariably a moralistic one. Any important disease whose causality is murky, and for which treatment is ineffectual, tends to be awash in significance.”
— Susan Sontag, Illness as Metaphor

When Suffering Becomes a Brand

In the decades that followed, the “battle” frame moved from policy into pop culture. Cancer campaigns adopted slogans like “Fight Like a Girl” and “Beat Cancer.” Pink ribbons became symbols of expected optimism and a branding of survivorship itself. The warrior metaphor became consumer-friendly and social-media-ready, uplifting stories of only the “strong” patients.5

Yet all of this comes with pressure to perform positivity and fight, even when rest is needed. If we aren’t inspirational, we risk disappearing from public view, and with it, community support. The “fight like hell” battle cry can make someone feel guilty or ashamed for deciding that another expensive and painful round of treatment just isn’t for them.

Alongside the benefits of fundraising, commercialization flattens suffering into marketing. “Exceptional” patients emerge, expected to monetize their journeys through books, courses, or social media, instead of simply being given space to heal.

My personal gripe with “warrior” language is how it affects people like me who live in the liminal state of incurability. I’ve spent my whole life fighting my own body. It left me in a permanent state of dissociation when I found I couldn’t win the battle. I fell deep into despair. I felt truly like a failure.

To carve out our sickness as a separate entity that we must always keep one eye peeled upon lest it overcome us is to carve ourselves into pieces. I am my body. And my illness is a part of it.

The only way I could re-enter myself, embodied and self-compassionate, was to accept my sickness as a part of me. Not a state of despair or resignation, but of integration and peace with the present moment. Only then could I face my massive well of grief and begin to heal. And when I say heal, I mean finding wholeness and compassion within myself, even as my illness remains.

I know that some people take comfort in the language of “warrior” and “survivor,” and I don’t seek to minimize the strength some folks receive from these words. There’s nuance to the personal power of language. And I think the trouble only comes when these words become imposed or assigned upon others.

Science and the Warrior Rhetoric

Scholars and patient-writers have since expanded on Susan Sontag’s warning. In fact, research now shows that describing illness as a “battle” or disease as an “enemy” can increase feelings of fatalism, reduce agency, and create moral pressure on people living in bodies that don’t always win.6 The language of courage becomes another way to police emotion, rewarding optimism and silencing despair.

Contemporary writers like Anne Boyer have tried to poke holes in that illusion. Her book The Undying refuses the triumph narrative, showing instead how illness unfolds inside capitalism. Care is labor, exhaustion is endless, and the language of courage often disguises abandonment. Boyer doesn’t reject hope, she just insists it must include truth.7

“Disease is never neutral. Treatment never not ideological. Mortality never without its politics.”
— Anne Boyer, The Undying

Beyond the Battle

When I hear someone call a sick person a “warrior,” I imagine the costume: armor polished for other people’s comfort, wounds hidden, a script of bravery to be performed on cue. That metaphor asks far too much. It demands that illness prove itself as heroism, while it lets medicine, policy, and social supports off the hook.

I prefer words that make room for rest, for defeat, for help.
Illness is not a contest, and bodies are not battlefields.

Imagine language that recognizes experience, endurance, and support without attaching virtue or failure to the outcome. Language that allows for a full range of emotions.
Imagine community instead of isolating the sick as performers. Survival without judgment.

I don’t want to be a warrior. I want to be witnessed.

“You will understand, I hope, that because of all of this, every pink ribbon looks like the flag of a conqueror stuck in a woman’s grave.”
— Anne Boyer, The Undying

Check out some other pieces I’ve written:

In just two days, I enter my yearly creative hibernation period. The temperature dips, signaling to me it’s time to wriggle underground where it’s safe and warm and quiet.

I’ll be out of contact with this swirling social media and email world until January 19, 2026. So don’t be alarmed if you cannot reach me. I’ll be sheltered, slowing down and percolating new ideas.

I’ve managed a socials and email break like this for quite a few years now, and I always look forward to it. It’s really the only break I take in the year.

The thing that happens first is I’m face to face with the terrifying dopamine monster. I’ll pick up my phone probably 30 times a day in a subconscious haze, stare at the screen for a few seconds, confused about where I am. Then it dawns on me that my addictive substance is no longer at my fingertips for the taking.

But each day I pick up my phone less and less. Until suddenly, I realize I’ve regained my ability to focus. I can read difficult non-fiction or academic books more easily. I can lose myself in an activity like I did when I was a child, looking up hours later only when the light has dramatically shifted.

I know they say it doesn’t really do anything long term to go cold turkey off of screen time. And it’s true. As soon as January hits, those apps back on my phone, the focus will slip away. Within a week, I’ll be in the same place I am now.

But for me, this ritual isn’t really about a habit change. It’s simply a vacation. It’s about letting my brain rest and reset. Enjoying that presence with my loved ones and doing all the activities I enjoy during my favorite time of the year, the holidays (including my birthday).

It’s about slowing down my Capricorn business brain that never turns off the rest of the year. Letting myself laze, lay about watching the curtains blow in the breeze, drinking a cup of tea. My mind drifts wherever it pleases. I’m not beholden to creative work I think I have to do. I let the sparks of imagination dance around me.

I hope that if you’re able to join me in a pause this time of the year, if your work and your world allows, you’ll give yourself that gift. Even if it’s just two weeks, just one month.

You are deserving of deep rest. You are deserving of presence and peace.

I am so looking forward to what next year brings. I will miss communing with you all during my break. I feel the fear of missing out pressing against my dopamine monster, telling me I can’t possibly let it idle. Whispering in my ear that I need it.

But I know the world will be there when I awaken anew, blinking my sleepy eyes against the jarring newness, stretching my tingling limbs, tentatively taking a step forward. I’ll reach out my hand to you then, joining as we feel regenerated and ready to imagine a new world together.

Love,
vōx

In case you miss me:

In the seventh edition of Conversations Behind the veil, I sat down with Tiffany Hammond, author, mother, autistic advocate, and creator of Fidgets and Fries, where she writes with fierce honesty about disability and motherhood.

We talk about expanding how autism is understood and the power of communication beyond words.

This series is a space for honest, unguarded dialogue with fellow artists and writers. We explore the unseen: chronic illness, creativity, queerness, neurodivergence, and the work of staying whole in a fractured world.

Content Note: This conversation discusses autism, disability, ableism, and the emotional realities of advocacy and parenting autistic children.

vōx: Hello Tiffany! Thank you for sitting down with me today. Your Substack has quickly become one of my favorites. I appreciate how you approach your writing with nuance, with poetry, with questions unanswered. Life isn’t a tidy narrative. Motherhood isn’t a tidy narrative. Disability isn’t a tidy narrative. The complexities and dichotomies are part of the beauty, and you seem to embrace that wholeheartedly.

What We Mean When We Say Autism

First, I want to thank you for writing so openly about your son’s vibrant life and the realities of supporting him as a nonspeaking autistic person.

I read your piece Redefining the Frame earlier this summer, and you begin the essay by stating that you don’t want to fracture the autistic spectrum or erase needs but to expand what autism means. And truly, this is exactly what your powerful essay does.

You make the argument that autism shouldn’t be reduced to a “social communication disorder” and talk about how that definition ignores embodied experiences like motor planning, regulation, sensory processing, and brain-body disconnects. You also speak on how the DSM and most systems are currently focused on observable behaviors, not the internal neurological or motor realities.

I couldn’t agree more. Even as a “level 1” autistic person, I feel this so deeply. My autism is a whole-body condition.

Almost everything about my autism is something that people cannot see but impacts me deeply in every way I interact with the world. Reducing it to how I’m perceived within a neurotypical society feels both ableist and capitalistic. Like the autism test is simply flagging the traits where I fall short so I can mask them to fit in properly and become a cog in the machine. It’s built around making autistic folks legible, compliant, and “useful” to a world designed for someone else, rather than supporting us to exist fully as we are. And I recognize that, in many ways, I’m in a position of extreme privilege compared to those whose autism is more visible or who need more support. As a highly masking white autistic woman, I can often tread that line of cute and quirky.

Building on that idea of expanding definitions, how do you imagine communities (schools, families, therapists) might shift their practices if autism were understood more holistically, beyond behaviors to include sensory, motor, and embodied experiences?

Tiffany Hammond: Thank you for that question, and for the care in how you framed it.

If autism were understood more holistically, the biggest shift I imagine is that people would slow down. They would stop rushing to correct, to fix, to measure progress only by what’s visible. Instead, they’d pause long enough to ask why: why a child is rocking, why they’re shutting down, why their body moves differently in the world. Behaviors would stop being the full story and start being seen as communication.

For my sons, that kind of shift would mean so much. My oldest, Aidan, is nonspeaking. When people look only at the surface, they see his stimming, his silence, the way his body doesn’t always cooperate with his intentions. But when we focus on the whole picture, his sensory needs, his motor planning challenges, the way his brain and body sometimes misfire, you start to see how much effort it takes for him just to exist in spaces not built for him. And you start to see his brilliance shine through when he’s given the right tools and time.

In schools, I think this could look like classrooms where movement is expected, not punished. Where communication devices are always present and treated with respect. Where regulation, co-regulation even, is as important as academics. In families, it might mean less pressure to make a child “look” typical and more openness to honoring their rhythms, their joy, their boundaries. And for therapists, it could mean shifting from compliance goals to dignity goals, supporting autistic kids in being more fully themselves, not more palatable to everyone else.

Ultimately, if we start with the body, with sensory and motor realities, our practices stop being about control and start being about collaboration. And that’s when true belonging begins.

The Language Beneath Language

vōx: Everything you said about collaboration over control really resonates with me. It reminds me of how your work, especially your children’s book A Day with No Words, invites others into that same understanding. To slow down and listen differently, to meet each other in new ways. I’d love to talk about its re-release this fall, alongside the audiobook as well.

From your piece A Day with No Words: The Beginning of Something, you write in depth about how your family’s experience has been shaped by frequent moves and repeated barriers to accessing speech therapy and AAC. You’ve described how school systems often dismissed your son’s potential, saying he was “beyond their skillset,” and how that led you to trust your instincts over professional opinions.

In implementing your No Talk Days, you put yourself in your son’s shoes and saw firsthand how overwhelming the world can be without speech, highlighting the complexities of communication and the value of autonomy.

Through writing and re-releasing A Day with No Words, what insights did you gain about supporting nonspeaking autistic children in everyday life, and how did this creative process influence your approach to advocacy?

Tiffany: Re-releasing A Day with No Words gave me the opportunity to step back and see just how much perspective matters in supporting nonspeaking autistic individuals. I don’t think I gave myself a moment to think about how BIG this book was when it was first published. It sold over 50K copies. For a picture book! From a debut author. It topped the NYT bestseller list. I don’t think it was until I was sitting down to map out how to promote a book damn near half of my audience has bought already, that I focused on the impact of this book. I didn’t think about how important my work was within this community. I didn’t think what I was doing was making that much of an impact.

It wasn’t really me writing the book and releasing it that gave me so much insight into the life of a Nonspeaker. It’s been going through these days myself, alongside my son, prior to even thinking about writing it down, that gave me so much information.

One of the clearest insights I gained is that communication is so much more than words. It’s motor planning, it’s regulation, it’s sensory experience, it’s the rhythms of a child’s body in a world not built for them. And when we acknowledge that, we start to create environments that truly honor autonomy and choice rather than just training a child to be “understood” in neurotypical terms.

Implementing our “No Talk Days” (what we called them) years ago was the first time I really felt what it means to live in a world without speech. It’s exhausting, it’s frustrating, but it’s also illuminating. I realized that my son’s moments of silence weren’t deficits, they were his way of navigating a world that often overwhelms him. That insight carried into the creative process of writing the book: I wanted readers to understand, viscerally, what it feels like to exist without speech, and how meaningful it is to be seen, respected, and given agency.

As for advocacy, the book reminded me that storytelling is one of the most powerful tools we have. It allows families, educators, and allies to experience a glimpse of lived experience they might otherwise overlook. It reinforced that advocacy isn’t just about fighting systems, it’s about changing hearts and perspectives, one story at a time.

vōx: I couldn’t agree more. Storytelling is such a powerful tool of compassion. And storytelling itself is impactful with and without words.

The Tender Weight of Advocacy

vōx: Your essay Awareness Doesn’t Demand Suffering as Proof struck me with such clarity and power. You write about how you situate your work at the intersection of multiple identities: Black, autistic, disabled, mother. And about how advocacy should be enduring and protective, not performative or exploitative. How we should be focused on action, not on shock or pity.

From my perspective, I often feel a deep discomfort seeing parents on social media sharing their child’s private moments and suffering for the sake of “awareness.” Those children cannot consent. And it’s so true, like you say, that this is reducing the experiences of autistic children to one note. It’s continuing the discourse that to have a child diagnosed with autism is a horrible thing, something to fear.

This line in your essay took my breath away: “True awareness doesn’t demand a child’s suffering as proof.”

Your essay emphasizes protecting dignity over showcasing struggle. How do you navigate this in practice, deciding what to share publicly, what to advocate for, and how to maintain your family’s privacy while pushing for change?

Tiffany: Knowing what to share and what to keep private isn’t easy. I often feel that if I choose not to share some struggles, I’m alone in them, with no one to lean on beyond my husband. That’s a risk I take. But I also have to be mindful of my children, the internet is forever. One post can shatter trust and take years to repair.

When I first started sharing online, my husband and I decided together whether to share our children’s images. We landed on “yes” because our presence already sends a message. For Black bodies, that message is often assumed to be aggression, fear, or misunderstanding. If the world is going to make assumptions about my children anyway, I want to shape that narrative as much as possible until they can speak for themselves. Sharing their faces is part of that. It says: this is who they are. Not what you assign to them.

I decide what to share based on my own experiences, not trends. I don’t write about autism academically or generally; I write from my lived lens. If a story involves the boys, I run it by the family first. I replace names with my own to test comfort and perspective. If it doesn’t feel right, I rewrite or withhold it.

Privacy is paramount. People don’t see the full scope of how autism moves through my children’s bodies, they only know what I choose to share. I focus on their strengths, accomplishments, and humanity, because advocacy is strongest when people see them as full humans, not burdens. True awareness doesn’t demand suffering as proof. That principle guides everything I share and advocate for.

vōx: Hearing how thoughtful you are about what to share really sticks with me. The compassion and intention behind it are so clear. Your practice of exchanging their names with your own shows how carefully you reflect on their experiences and your own role in telling their story.

It makes me wonder: doing this work so openly alongside your sons, how has it shaped the way you see yourself, your motherhood, or even your own neurodivergence?

Tiffany: It’s interesting that you ask this question. Not in a bad way, but I am at a point in this journey where I am trying to figure out who I am. I didn’t expect Fidgets and Fries to grow the way it did. It was always meant to be the arm of my efforts not the heart of it. And it’s still the arm, but it’s a heavy damn arm. Most people who know me, meet me first through Fidgets and Fries. They don’t actually know Tiffany. And at first, I didn’t struggle with this. But now, I do. And I think it is because my advocacy and stories with F&F morphed into this brand without my intention or permission. I feel like Tiffany is fighting for dominance. I have been doing this for so long that I feel that it has run me over a bit. So, I think I am just finding a way to bring more Tiffany into my work. And ironically it’s the result of drowning in F&F that is making me realize this. There is great love and joy and purpose in what I do with my advocacy, with my kids, and my stories. But there is tension there. And I need to find a way for it all to coexist, harmoniously.

vōx: I can definitely relate, from my experience as a musician, to that feeling of fighting between who I really am and who my online persona and brand are. I love to hear that you’re finding ways to bring more of yourself into your work.

Tiffany, thank you so much for joining me here. The work you’re doing is so necessary in this world, and I appreciate you sharing openly with me today. Before we wrap up, I love to ask what things have been bringing you joy lately? And is there anything else you’d like to share?

Tiffany: Right now, writing is bringing me the most joy. Trying out new recipes with the family is a close second. Some are hits, and some are horrendously bad. But anything that I do with the family is special to me.

I would like to let everyone know that my picture book, A Day with No Words, is on preorder right now. It comes out on November 4th and I cannot wait.

Read previous conversations here:

You know what’s really scary?
How many disabled people disappear when they stop being “inspirational.”

It’s not a surprise, our culture loves “overcoming” stories. It’s on the nightly news. It’s in that viral video. It warms our hearts to know that the disabled folks are still happy, still finding their way to be a cog in the capitalist system. It brings us to tears to think, if that happens to me, I can overcome it and find joy and success.

But in doing so, we close our eyes to grief, ongoing illness, and dependence.
The true horror is vanishing from public empathy when you’re no longer marketable.

Disability is not a monolith.
Our experiences are complex, joyful, messy, worthy, dark, beautiful, and always changing.
Our experiences don’t need to be transcended to be worthy of admiration.
Our experiences don’t have to make able bodied people comfortable.

The truth is, there’s nothing to overcome.
We are not at war with our bodies. This is not a battleground.
To accept our illness and find the peace within the suffering is not to give up.
It’s to become whole again.

And when we stop applauding the “fighters,” we stop asking why we’re all expected to fight in the first place.
The glorification of resilience is how the system hides the harm it causes, and how it absolves itself of care.

You know what’s really scary?
How easily we normalize suffering, and how many of us live in bodies that medicine still doesn’t understand.

We burn ourselves out in these capitalist systems. And then doctor after doctor gaslights us.
The monsters aren’t in horror movies. They’re in healthcare.

This is the ghostly experience of living with something “invisible” that’s also very real.
A haunting. A pain that is ignored but ever present.

I’ve learned to mask my pain like background noise.
I stop mentioning it because I know they’ll call it anxiety.
I start to wonder if I’m the ghost.

But people only want to put money towards illnesses they can cure.
Because to cure is to slot us right back into extraction, right back into the systems that wound us.

They like the illnesses that have an easy story arc from sick to healed. Ones with a heroic end. Not the ones that live liminally. It’s why things like hEDS, POTS, long covid, and fibromyalgia are so sorely underresearched. These are the illnesses that never resolve, that live in the hallway between “sick enough to matter” and “well enough to work.”

You know what’s really scary?
How afraid we are of needing each other.

We’ve internalized the same logic that harms us.

The system teaches us to be self sufficient, even as it depends on our exhaustion.
Ableism thrives on the illusion of autonomy. We’re fractured. Communities are dismantled. We’re taught that needing each other is shameful, that support must be earned or bought.
Accessibility is treated like a luxury, and interdependence like a weakness.

All so that we turn to capitalism as if it can support us.
As if we can buy something to fix us.
As if we don’t just need each other.

You know what’s really scary?
Disabled people know the end of the world better than anyone.

We’ve lived through medical collapse, housing collapse, social collapse. The quiet apocalypses that happen one denied claim at a time.

To become disabled is to peek behind the curtain.
To see how the systems fail us.
To see how scared the able-bodied are. How they look away and pretend we don’t exist. How their fear is weaponized in anger.

To see how eugenics is alive and well.
It’s in the general disregard for something as small as wearing a mask.
It’s in the genetic testing designed to “prevent suffering,” but also to prevent the existence of disabled people.
It’s in the surveillance to prove we’re disabled enough to be worthy of resources.
It’s in the obsession with output and efficiency, hierarchies of value that tell us if we can’t work, we are a burden.

We’ve already learned how to live through collapse.
Disabled people are some of the most creative people I’ve met.
We know how to live alongside the ghosts, and the monsters. They’re inside of us all.
We know how to bring light and beauty into our haunted corners.
How to find each other’s hands in the darkness.

Maybe the scariest thing of all is that the world still refuses to listen.

Previous pieces I’ve written from the darkness:

All My Besties is a remix EP, reimaginings by incredible artists (Blackbird Blackbird, Ben Sloan, Karen y Los Remedios, Drum & Lace, and LouLabelle) of songs from my debut album. The genres are wide ranging, from driving dark electronic to orchestral ethereal cinematic to dream pop latin cumbia. I hope you’ll take a listen!

Also, huge thank you to Nicola Phillips at Kaltblut Magazine for letting me be the first artist in their new series, Unmasking, highlighting neurodivergent creatives!

Check out the full interview piece here!

I know it’s still a few months until the end of the year, but I’m only a month out from my yearly pilgrimage to a months-long social media break.

This ritual always makes me reflective, and 2025 has been such a strange blend of contraction and quiet renewal. A year where the way I treat myself internally really came to a head. Where health and sickness stress brought me to new depths, and in those depths, I had to make a change or risk not clawing my way back out.

In the middle of it all, these small habits became anchors.

My Breakup with the Phone Alarm

This habit has been a highlight for me this year. I stopped using my phone as my alarm clock, and instead, every night I plug it in to charge in a room that’s not my bedroom.

I know we’ve all read this on good sleep habit lists a thousand times, but I cannot overstate the impact it’s had on me. Earlier this year, while my partner and I were prepping for his bone marrow transplant, I was more stressed perhaps than I’ve ever been before. And more at risk of the dissociative social media scroll.

This was the only way I could stop myself and wrestle back some semblance of mental health.

I try not to go get my phone first thing in the morning either. I usually give myself two hours before sleep and two hours after waking of no electronics. On non-work days, I sometimes forget to get my phone for half the day. It’s cut down on my mindless scrolling and deepened my sleep.

Like many of us, I still need to know the time in my bedroom and occasionally set an alarm, so I bought a simple battery powered alarm clock that has no light on its face for minimal sleep disruption.

Rekindling My Library Crush

Very connected to this phone habit is what I do with my time in those tech-free hours before bed and after waking.

I knew I wanted to start some non-electronic hobbies this year. It’s been on my mind for a few years actually, as I disengage more and more from capitalism and start to see my self worth as separate from my work output. It’s made me want to do things simply because I like them. The way I used to as a kid.

So I turned back to a childhood favorite: reading books from the library. Honestly, when I found out most public library systems let you check out e-books for free, it felt like the life hack of the century.

And for my neurodivergent brain, having a due date on a book gamifies reading in a way that I find really pleasurable. It means I finish books faster than I would have if I just owned them and had all the time in the world.

Learning the Language of Gentleness

This was the year that self compassion finally clicked for me. It’s something I’ve been working toward for probably a decade, inching closer all the while. But suddenly, something changed in the words I speak to myself.

It began with a mantra I started saying in October 2024, one I’ve shared here before: I love my body exactly as it is. I want to be in my body even when I’m hurting.

Something shifted once I faced the grief underneath those words. At first, they couldn’t have been farther from true. And because of that, I wasn’t speaking to myself kindly. I didn’t love myself enough to truly show myself compassion.

But as those words became less painful, I started to lean on compassion as a first choice. Whenever I would find myself sinking into cycles of sorrow and anger, sobbing in bed about how unfair the world is, how much I wish I could stop the constant pain in my body, I’d turn to myself and say, “It’s ok, little one. I know you’re hurting. You have every right to feel what you feel right now. Just let it out. You deserve peace.”

These practices have been so healing. I am my own mother now, showing myself, my inner child, the love she deserves.

Meditating Like a Rebel (a Horizontal One)

I’d wanted to start a consistent meditation practice for years. I even wrote a whole Substack post about it, so I won’t go into too many details here, but one of the biggest barriers for me has always been the physical discomfort.

It’s hard for me to explain, but maybe my other hEDS and POTS babes will understand: my head feels too heavy for my neck to properly hold up, and my heart beats so fast trying to pump blood that it becomes stressful. Even with back support, it feels like my organs are squashing upon each other and I can’t get in a deep breath. All I can focus on is the pain, making me increasingly more panicked.

So I decided to stop following the “rules.” Now I lie down to meditate every evening. It means I’m comfortable enough to stop fidgeting, but being chronically ill, I’m never comfortable enough to accidentally fall asleep. From this position, I can diaphragm breathe deeply, and it finally feels relaxing.

Leaving the House Anyway

This year I’ve kept up my habit of walking four to five days a week. Even if it’s just a half mile, I need to leave the house.

It’s so easy for me to become a hermit in my deep autistic burnout. To stop exercising altogether because of the intense discomfort, or because I tend to overdo it without meaning to. But these little walks, even when they’re brief, remind me that movement can be as gentle as I need it to be.

Tending the Small Things That Keep Me Alive

This was the first year I started taking self care seriously as a sick person. Maybe it’s tied to my growing self compassion, that deeper theme of the year.

A few things I’ve started doing:

I drink a glass of water with electrolyte powder first thing in the morning, and it’s made a huge difference in my brain fog and overall morning malaise. I like the one from Recess and the one from Seeking Health.

If I leave the house for more than twenty minutes, I take a 12-oz bottle of water with electrolyte powder. As my fellow POTS babes know, sudden dips in blood sugar are common and unpredictable. One moment I’m fine, the next I literally cannot go on unless I’m hydrating immediately.

I’ve also started nipping my inflammatory response in the bud by icing my damaged connective tissues right after any activity. Even if it’s just vacuuming one room or walking half a mile, if there’s a chance it could trigger inflammation, I pull out that ice pack right away. It’s made a huge difference in my flare ups.

A Small Conversation with Myself

The final habit I’ve loved settling into in 2025 is daily journaling. This year I started on one of those multi-year journals, a 5 year one. I love the idea of a future me in 2029 opening it each day, able to see the growth right there on the page from all those previous versions of myself.

These journals also make it easy: the writing space is small enough that it never feels overwhelming to fill. It takes me less than ten minutes a day, and that’s kept it a joy rather than a chore.

I’d love to know, what are some habits you’ve started or kept up this year that have made a difference in your life?

Leave a comment

Check out some previous words I’ve written:

In the sixth edition of Conversations Behind the veil, I spoke with pax reese, writer, healer, and creator of inner cartographies, a Substack that explores relationality and the maps we make of our inner worlds. inner cartographies is an extension of pax’s wider project, which offers breathwork and spiritual support on a sliding scale, especially for queers, BIPOC, abolitionists, and low-income folks.

We talk about presence and resistance, conflict as intimacy, spacious love, and the ways trust and deconstruction shape our creative and relational lives. pax writes and lives with radical tenderness, opening space for complexity and paradox.

This series is a space for honest, unguarded dialogue with fellow artists and writers. We explore the unseen: chronic illness, creativity, queerness, neurodivergence, and the work of staying whole in a fractured world.

Content Note: This conversation includes mention of religious trauma, chronic illness and pain, inner child work, and sexuality/relationships (including nonmonogamy).

vōx: Hello pax! Thank you so much for sitting down with me. I’ve been really moved by your writing, especially the way you hold space for complexity without rushing to resolve it. In a time when so many people want quick answers or neatly packaged healing, your work slows things down and makes room for nuance, contradiction, and deep self-honesty. I know a lot of people feel seen by what you share, especially those navigating chronic illness, queerness, or creative life.

On Beginnings

How did you get started in the art form of writing?

pax: hi vōx. im grateful to connect with you, especially because you’re someone who also brings so much raw depth to queering chronic illness & creation.

i feel very honored to hear that my work has a way of inviting slowness in a hyperspeed world, especially because i often dont feel very slow myself.

somewhat embarrassingly, i began writing as a kid exploring my faith and christianity. i actually rewrote the bible when i was in grade school, to this like hyper condensed 10 page story (i couldnt deal with how long it was). in high school i went through a sharp atheistic phase and started messing around with poetry & songwriting. then, i got really into writing punk music–that stays with me now.

i actually went to college to study english, but discovered i detested structural-prompted writing and ended up switching my major to philosophy. there, i learned how to write both critically and with an open curiosity. i really feel i owe my deconstructive and explorative abilities to my time studying philosophy. we had a really cool curriculum that encouraged us towards analysis of power & disparity, and on another level how to actually be a part of the world and interact with it meaningfully.

mostly though, im a writer because i have to be. im a singer/musician/artist and find that i have to have multiple creative outlets to keep my inspiration alive and inspired. writing has become a way of keeping myself honest about what’s happening in my body and life–like all creation it’s how i maintain a relationship to the future and the worlds i long to live in.

vōx: It’s been interesting hearing about your path. I definitely see similarities. I was very religious as a kid. At one point I even replaced all my secular music with Christian counterparts, which was a huge deal because music had been my everything. In many ways it felt like my reason for living. Later, I became agnostic in my late teens and have stayed there since. I still suspect I have work to do around the trauma religion left in my younger years.

I didn’t think of myself as a writer for most of my life. I hated essay writing in school. I procrastinated until the last minute and stressed myself out finishing assignments. In hindsight I think a lot of that came from undiagnosed autism. Oftentimes assignment instructions would be too loose for me. I’d be plagued with insecurity that I wasn’t doing something right or following the rules correctly. My parents were academic focused, so much of my worth was tied to grades and I was praised for that more than for other parts of myself.

I wrote fanfiction for fun when I was a teenager, and then I dove headfirst into poetry that transferred easily into lyrical writing. And that’s where I stuck. I only started writing essays at the beginning of this year after a 17 year break, and I suddenly discovered I fucking love it! Proof that it’s never too late to try something new or something you once disliked.

pax: i relate to this so much, especially the parts about struggling with writing in school. i think the funneling-automated function of schooling can be really discouraging to some of our natural talents, and can be really discouraging for alternative ways of expressing/writing. i’m glad you found your way to writing despite all of the indoctrination.

Presence, Conflict, and Healing

vōx: I really feel your piece “my god is the present moment: the fallacy of enlightenment.” The way you reframe presence not as a serene escape or a perfected “now,” but as something that demands stamina. You talk about conflict as a portal to intimacy, truth, and transformation. The liminal state of healing, never arriving at a destination but always being in it. These are things I’ve been thinking about.

I’ve struggled with remaining present to the conflict inside myself. I really owe a lot of my growth to plant medicine, and the way it’s rewired my neural pathways. In my last ceremony the practitioner told me she sensed a huge resistance to being present in my body, a body full of pain. And that I didn’t love my body in its imperfection.

After that I started a mantra: I want to be in my body even when it’s hurting. I love my body exactly as it is. The first time I said this out loud, it opened a floodgate of alarms and resistance in my brain, “WARNING, THIS IS A LIE.”

But affirmations can change from fabrication to fact faster than you’d think.

You write about resisting the urge to arrive at a perfect healed self. What practices or people help anchor you in that resistance when pressure to “be healed” creeps back in, and how do you navigate the tension between surrendering to the present moment while still holding hope or a vision for something different?

pax: wow, vōx. thank you for sharing that powerful story with me. im curious about how that integration has been for you. plant medicine, for me too, is the most accountable and honest teacher i have. some of the greatest breakthroughs ive made with my health, and my acceptance of it, have been by sitting with these teachers, both entheogens and more subtle plants.

it’s actually through plant medicine and other somatic practices that i’ve come to understand that healing is an illusion. i write a lot about presence because i’m disenchanted with how it’s constructed in normative spiritual settings. but the thing about presence is that if you allow yourself to be ‘here’, then you have to allow yourself to be with every piece of yourself. if you allow yourself to be ‘here’, then you finally admit that there is no where to go, it’s all right in this moment. that’s scary to a body that’s only been taught how to ‘progress’.

the pressure creeps back in daily, especially moving through the world in a body that favors the slow delights of healing through time. im a breathworker and somatic practitioner, and find that i can break through the resistance when im holding space for other people. which, is bizarre, because people often ask if the deep emotional work i guide people through is draining, but it’s not. somehow, allowing myself to be of service to others really works for my body. mainly, because what the people im working with are moving through is relative to the conflicts in my own life. healing in community often happens in this mirroring kind of way.

mainly, im in the practice of allowing shit to be fucked up when it’s fucked up. people often come to me with a deep shame that they aren’t ‘meditating enough’ or that they’re far from their practice. but, what if the practice is also in the not practicing? that’s the medicine that carries me through. the knowing that there’s a future me looking back in awe of everything im moving through now, possibly even missing the way i viewed my situation then. it’s all very meta, but really the practice the anchors me amidst resistance is to surrender to what ever im resisting; whether that be admitting im scared, stressed, feel unhealthy–then my body can finally let go and shift focus towards being wherever it’s at and using its resources to provide me the care i need.

i navigate the tension between surrendering to the present and holding hope for the future by understanding there’s no distinction between and Now; past, present or here. something else i’ve learned from plant meds and my own somatic work/parts work, is that if we can reach into the past and hold ourselves, then there are also future parts of us holding us where we are now, and we can call on them.

Meeting Younger Selves

vōx: I love that viewpoint. Trauma in my body often ties to specific life moments. A present trigger can drop me right into being eight years old and hiding in a closet. It’s wild, but it’s true. I’ve found growth in recognizing these patterns and meeting that eight year old version of me tenderly. Talking to her compassionately, being the mother she needed.

It reminds me of a piece I read this spring about processing emotions. It urged recognizing an emotion as it arrives, then choosing whether now is the right time to process it or whether to set it aside for a moment when you have more somatic safety. That felt counterintuitive to my earlier belief that ignoring emotions was always bad practice. I now see a wisdom in trusting your body, not pushing past what feels unsafe, and setting aside time when you can be fully present to the work, whether with a therapist, a loved one, or in ceremony.

pax: yes! this is brilliant, important emotional knowledge to hold. i LIVE by this practice, and think it can be really healing in a culture that values reactivity more than it values processing and sifting through our inner worlds. i take this knowledge into moments of heightened intensity with myself, or in conflict with others. like, sometimes i shift back into a disempowered, younger version of myself, and how they might respond to a situation isn’t totally in line with what a very present, open hearted me might do. of course, those parts of me have valuable wisdom, and are trying to protect me–but i’ve learned that i get the most satisfaction out of emotional tumultuous situations when i come from an empowered, rooted sense of self.

the days that i set out to do deep inner work, at this point, i only do it when im in a good mood. which sounds counterintuitive because like why would i risk my good mood to feel scary stuff? but, i’ve learned it helps me have a greater navigational sense of my inner world–it helps me become a cartographer and honest observer of what’s going on inside of me. when i first intentionally started sitting with plant meds i would be like “okay im ganna heal my deepest darkest wounds” and i would come into my journeys SO intensely. and it actually made my healing process through those things that much longer because i wasn’t giving myself the integrative space that coming to myself when i felt good about did.

the point you made about transporting across time to yourself when you were more vulnerable is so important. and that part of you is such an incredible and deliberate messenger to be able to reach itself across time and find you in your present body. even in fear, those parts of us are so powerful and resilient–their knowledge of our needs is extensive and deeply lived. and when you bring that other piece of wisdom you shared into play with that, to approach it when it feels safe…it really gives us space to fully hold ourselves and hear our, sometimes contradicting, needs without judgement or confusion.

Trust and Spacious Loving

vōx: I’ve been in an ethically nonmonogamous relationship for over nine years. So your piece, “love under surveillance: deconstructing our culture of paranoia,” really hit home. Your critique of narratives that treat conflict as proof a relationship isn’t meant to be. Your insistence on the inevitability of hurt. And your framing of trust as an active practice. All of it resonates.

Nonmonogamy has changed my life and helped build an insanely resilient partnership. It forces conflict into the room, and every time you come through it together you deepen trust, communication skills, and freedom of expression.

Early on, jealousy surfaced for me. It’s only natural, and it helped me face it to learn that it’s a secondary emotion. There’s always another emotion underneath. For me, it was a version of myself as a small child, desperate to not be abandoned and feeling deeply unworthy of love. I couldn’t get through the jealousy until I learned how to love myself. I doubt I’d have faced that wound for many more years, if ever, without nonmonogamy forcing it into my life. It was simply too deep and painful.

You write about choosing trust as a practice. What does “spacious loving” look like in practice when someone repeatedly hurts or breaks trust, and how might your ideas about trust shift when applied to non-romantic relationships like family, friendship, or community?

pax: yeaaaaaaaaa i relate to this all so much. especially about how the parts of me that get scared in non-monogamy are often younger parts of myself. you’re so right, polyamory really does help you build conflict skills in a way that monogamy doesn’t give us access to.

i wanna clarify first, that trust is not an easy practice for me. ive joked to friends before that venus scorpio people (me) arent meant to be polyamorous, but i come to polyamory because i have to allow my intensity to flow through multiple channels.

my writing might make it seem like i offer spacious loving to everyone, but im actually very specific with how i use my trust. generally, i start with a basic level of trust and work from there. i dont know if spacious loving can happen without commitment to meaningful conflict.

if someone repeatedly hurts me or breaks my trust, i don’t necessarily have a protocol i follow other than seeing what the context to the hurt or betrayal was. first, i’d make it known how they hurt me, and figure out what their intentions were. sometimes boundaries are crossed because we haven’t explored them, or we didn’t know they were hard limits–in which case i’d want us to both get clear and do some exploration and worldbuilding about how to navigate this in the future, and communicate our needs along the way.

in the case of someone deliberately hurting me, especially about harms we’ve discussed then i have to seriously evaluate our connection and how deeply i am able to be connected. sometimes, im messy and human and it seems worth it to keep my heart open and trust in the other’s integrity to hear me from their heart and change their behavior. other times, the thought of continuing, or maintaining a particular closeness is so painful that i just need to take space and tend to myself, and hope they take the space to tend to themselves too.

as far as non-romantic relationships, i’m a relationship anarchist, and i really try not to prioritize or hierarchize romantic relationships over non-romantic ones. im actually ever-working on viewing all relationships as having the capacity to be both romantic and nonromantic–it’s also a movement in desexualizing my connections. of course, trust does change with different relationship types. im learning that de-hierarchizing doesn’t mean absolving all hierarchies, just as being present doesnt mean detaching. instead, it means recognizing the power differentials present in our connections and not turning away from how they impact our relationships.

power differentials are both systemic and personal. basic recurring power differentials could be like racial, gender based, money based—these happen everywhere in all of our relationships. when it comes to trust, being able to hold our varying levels of power and talk about them & feel through them is crucial. then of course, there’s minor ones that ebb and flow with different themes in our lives. for example, when we’re moving through random difficult life shit, stressors that activate our wounds. you know, the subtle power dynamics that we sometimes swallow like, someone taking up more space in the relationship than we have capacity for, or us not speaking our truth because our shame or people pleasing tendencies.

this is all relevant to trust. like how can i trust you if you can’t tell me what you need, want, or feel? there’s a flowing element of self trust that needs to be evident for me to feel a general sense of trust for others. do you trust yourself to be fully you around me? obviously, in relationships we all flow in and out of internalizing our own oppressions, so i have a degree of spaciousness for letting that naturally ebb and flow. but my general want, is a space to bare things out in the open and be like “hey so actually this dynamic is kinda weird for me”. i don’t really care if it’s succinct or messy, as long as it can come through then i feel a sense of trust, because intimacy is being utilized.

i could go on and on about trust, but really i intentionally diverge from cultural constructions of trust which rely on the premise that “i can trust you, as long as you don’t hurt me”. my sense of trust makes space and welcomes others to hurt me, to be in conflict with me, and is hinged more upon what we do to build trust and intimacy across time and connection.

Desexualizing Connection

vōx: It’s helpful to hear the messy, vulnerable reality of it. Non-monogamy isn’t perfect. It’s hard work, trial and error, and frequent cliff-diving. But the payoff is the resilience you describe. It keeps us on our toes! Complacency is not possible, that’s for sure.

I’m so curious to hear more about desexualizing your connections. As an asexual person, that really strikes me.

pax: desexualization is essential to me being able to express myself fully & build trust and intimacy with others. i have *gasp!* a pussy, so i’ve spent so much of my life surveilling my body through the male gaze. i grew up in a family that really emphasized beauty, and affirmed that my beauty was the most important thing about me. even to this day my family rarely affirms the things that matter to me; how i’ve studied myself, cultivated care, play multiple instruments, you know, real qualities of myself that i value deeply and center my life around.

i remember reading a post of yours about the power and liberation shaving your head gave you, that really struck me. that resonated deeply in me, and am sad to say i’ve heard the same sentiment from so many people.

i spent a good portion of my sexual life dating cis-men, until i realized it was a trauma response. through much trial and error i had to brutally learn that cis-men rarely met my needs, and often, even the radical ones, valued our relationship through a politic of desirability.

we live in a hypersexualized colonial culture that views any body that isn’t a cis white man as something to be possessed, consumed, and owned. desexualization is one way i have been able to free myself up from that pressure to perform womanhood and good-objectness. what that looks like is very specific to me, but it started with degendering myself and becoming nonbinary. i am not meant to hold all that comes with performing womanhood. when i stopped gendering my body, i started to notice how much other people relied on their gendering of me to have a connection with me. you go on a date with a cis man and tell em not just “i’m nonbinary” but also “you know im not a woman at all right? and if it’s confusing for you then use he/him pronouns for me instead.” they can’t handle that shit.

desexualization for me, is also rooted in asexual perspectives. asexual people have taught me more about love and intimacy than sexually-centric connections. because of our sexualized culture, sex comes with so much pretense and context before we even fuck. desexualization is a way of dropping that back. but its not just something you can talk about which is difficult, you have to find people who are willing to desexualize your connection together. its kind of like a lens you learn to look through, the same way that learning to degender people happens across time until it really becomes an embodied part of you to view others through their own gender lens, or as nongendered until they tell you otherwise.

the thing about desexualizing is that its not about sex, but it can include sex. it’s about taking off the sexualized cultural scripts off of each others bodies. and if you do have sex, it can become this really pure thing where you’re just meeting the other person in their full being, as they are. i think part of it is letting go of the narrative that sex is how we build intimacy. instead, intimacy is how we build intimacy; vulnerability, authentic sharing, touch that has no intention–-it’s a practice in deep being. it’s hard to describe because its a lived practice. i integrated this kind of orientation by playing the 3 minute game with friends, which you can find on the wheel of consent website.

The Practice of Deconstruction

vōx: The viewpoint of meeting people as non-gendered or desexualized is just amazing. Your piece “this pussy is work, so i only fuck deconstructionists” was also so brilliant. From examining why we believe what we believe and not just what we believe. To not getting trapped in “good” vs “bad” binary thinking and the spiral of shame, which can be so isolating or self-focused. Your emphasis on partners and friends who move with softness, presence, and responsibility resonates with how I seek connections, people who can hold complexity and curiosity.

I always say I’m looking for friends who are non-judgemental. I think honestly it’s one of my best qualities as an autistic person. I’m so curious. I’m so sincerely interested in the depth of humans, in the parts that are contradictive, in the most vulnerable spaces.

I was once given the advice that the best thing you can do in your relationship is to be on the same team as your partner, to move with trust and curiosity versus suspicion that their intent is to harm you. This was a gamechanger for me.

How did your deconstruction practice begin, was there a turning point or relationship that catalyzed it? And how do you discern between someone who’s only saying the right things and someone actually living them?

pax: dang, this part, “how do you tell the difference between someone who’s just saying the right things and someone who’s actually living them?” WOOOO–that’s the question.

i think this thought, this question, is how i came to deconstruction with necessity. i write about harm and conflict a lot because ive experienced so many radical humans, that i was close to, totally 180 when it came to handling harm in our communities. watching people who claim to be abolitionists and anti-police/imperialism just absolutely dehumanize and alienate someone because they themselves were afraid of getting canceled for not cancelling someone else–that radicalized me. i used to not have the language for what i could feel in my heart. i didn’t know how to carry it out, but i felt so deeply that no human, regardless of what they’ve done, should be denied access to care, love and healing. ive lost so many wonderful friendships because people were unwilling to deconstruct carcerality from their hearts. i dont blame them either, because we’ve all been taught how to mirror cultures of violence and dehumanization onto each other, but i have to question our avoidance of actually being in conflict with each other. like, if we are going to imagine futures without police, without war, without prison walls–we have to remove the prison walls in our hearts.

living in your politics is different than just contemplating them or absorbing information about how to be a ‘good’ person online. living in your politics is dangerous—politically, socially, and emotionally. there’s no risk to taking in information if you don’t do anything with it. like with abolition, for example, it’s not enough to just imagine and hope for a world without prisons, we have to start doing the deep conflict work now. that means, accepting that we are going to hurt people, and they are going to hurt us–that’s a part of being in relation. that doesn’t mean we have to stay connected if we don’t want to, but it does mean we all still deserve to be treated with humanity. we have to live abolition every day of our lives, so we can get it right on a larger scale when we break down the prison walls. we have to learn to sort through our traumas, our wounds, and not thrust them on each other everytime we are hurt. this is how i tell the difference between someone whos just saying the right things, and someone whose living them. i dont care what kind of jargon youve learned, some of the most radical futuristic people i know dont have the language that someone whose academically trained or chronically online does–but they practice worlds from the future. i wrote once “i really try and live the teaching that if i “AM” something, then i don’t need to announce it. if i am loving, you will feel my love. if i am radical, then it will radicalize you”, and i feel this to be true to how i can tell if someone is living their beliefs.

Closing Reflections

vōx: Wow! This is so powerful: “i really try and live the teaching that if i “AM” something, then i don’t need to announce it. if i am loving, you will feel my love. if i am radical, then it will radicalize you.” That really blows my mind wide open.

I feel like nothing else we say here can top that, so maybe it’s a good sign to wrap up this wonderful conversation. I’m so grateful you’ve taken the time to let me more deeply into your beautiful soul, pax!

Any final thoughts? I’d also love to hear about the things that are bringing you joy these days.

pax: thank you so much for your dedication to this practice of sharing collaborative wisdom, and for inviting me to be a part of it.

i’m finding a lot of joy in possibility. everything feels so precarious right now, and i’m taking it as an opportunity to lean into the instability and imagine new worlds.

i’ve been really emotional about some of the deep relationships i have, and the amount of humans who love me thoroughly, and value my input, creations, and messiness. that kind of spaciousness to love and be loved, keeps me grounded enough to both take in the absolute horror show of living on earth right now, and be like okay, i have work to do and it’s all shit anyways so what ELSE can exist besides this. that feels really good, and i’m really feeling the medicine of being a dreamy ass bitch right now. i’ve been leaning into radical sci-fi heroes, queer theorists, and open hearted visionaries more than ever now; octavia butler, adrienne maree brown, ursula le guin are especially medicine for me right now. we need worldbuilders more than ever, and we need the people who are willing to go on imaginative quests and explore alternate realities to bring back their visions and ground them into this reality here. “writing the ending” through imaginal worlds is my joy lately.