1. A Note from my Stomach

    This text starts with me and my head above a bucket. I am experiencing some of the worst stomach pains I have ever had in my life. It feels as if something is being inflated inside my stomach, a grotesque balloon swelling against my organs, stretching skin and muscle to their breaking point. The pressure is unbearable, as though my body is about to split open and tear through me. I will spill onto the floor — my guts and intestines — leaving me there to die in the aftermath. But nothing comes. Nothing moves. Everything stays trapped, suspended. I want to cry so that at least something leaks out, filling a bucket that already threatens to overflow.

    In about a week, the festival is about to start, but I am dreading its very existence. I have been pretty much locked up in my own home. My bed has become the border of my own sick world. I am wearing a black T-shirt with ‘rights, not charity’ — a T-shirt I bought to support an activist group advocating for independent living for people with disabilities. I am covered in about three blankets, drowning in pillows, pearls of sweat on my body, but I still feel cold. From time to time, my cat checks in with me to see if I am still alive. She keeps me company in moments like this. I am terribly depressed, overwhelmed, and overstimulated by my own body. At this point, I am questioning whether my very existence on this planet is really worth it. Suicidal ideation is honking at me like a broken getaway car at the end of the street, and it is calling to me, seducing me to just get the fuck out of this body.

‘I am not doing well,’ I text a good friend.

‘I know,’ she says. ‘You have been there for a while now, right? Is there anything I can do to help?’

‘No,’ I text her back.

    My partner arrives at my place. The door has a little witch bell hanging on the doorknob, and like Pavlovian conditioning, my body starts crying tears I have been trying not to shed for the whole day. Crying hurts, as my migraine feels like knives stabbing my left hemisphere and eyes. I feel like I am about to barf again. I swallow my tears, as crying feels like it is going to make everything even worse, but as he crawls into bed with me, I let them run. I am crying like the child I used to be, skipping through long hospital corridors, drugged with opioids and bracing myself for the next place the pain would land. I am in my bed, and I am terrified. This just seems like it’s never going to stop. Why is my body doing this to me? Why did I deserve this?

   And in this moment, my head over a bucket and my partner holding me tight, I am considering the fucking irony that I have to write a text for an art festival with the title Your Health is your Wealth?!

2. Hippocrates is dead

    We are five months from the big bucket incident. The festival is already long behind me, but I am still not doing well. Over the last months, I shrank about two clothing sizes. I have been on and off heavy and multiple stomach protectors, stomach laxatives, antipsychotics, and antidepressants, trying to at least be able to eat. I have not felt a sensation of hunger in months, let alone the possibility of feeling something so profoundly simple in the human condition: enjoying food. The malnutrition and pressure on my autoimmune system got so severe that I ended up with what dentists call ‘trench mouth’. My gums got so severely infected that they turned necrotic. Whenever I was not struggling with my food intake, I was in bed with devouring migraines because of that same malnutrition, which pulled me into a relentless cycle of pushing myself to eat while fearing food at the very same time. At times, even drinking water ended in episodes of severe stomach pain.

This cycle — day in, day out.

    I have ended up in the ER at least four times. I have had four blood panels done, an echo, a gastroscopy, biopsies, an EKG, X-rays, a stool examination, and I saw at least eight different doctors. Still, the results are clean, as if nothing is wrong. No one seems to find anything, but I am terrified something serious is wrong with my body. I am afraid to die. My GP shrugs his shoulders whenever I see him and says he too has no clue what is happening to me. Whenever I am seeing any kind of health professional, I get asked whether ‘I experience a lot of stress?’ or ‘If I ever thought about seeing a therapist?’

    No one believes the pain I am feeling. I do not feel listened to, and every visit I am being sent home with some lazy-ass, stress-related non-diagnosis, like ‘functional dyspepsia’ or ‘a lazy stomach’. At the same time, no healthcare professional is making the effort to order extra tests to look for new clues. I think any woman, fat person, person of color, or person with a disability immediately knows what is actually happening here. We all, collectively, know that this would not have happened to me if I had presented myself as a straight, white, cisgender, neurotypical, able-bodied, thin man.

***

    A study in the UK in 2022 pointed out that 32% of people with disabilities feel gaslighted and not believed when seeing a healthcare professional, compared to 10% of people without disabilities. A similar study in Canada pointed out that people of color experience around three times as much discrimination during doctor visits, including racial bias, gaslighting in pain experiences, and a significantly higher mortality rate during childbirth. Many fat people still experience fat phobia within the medical system and are therefore also at risk of misdiagnosis, discrimination, dietary bias, and medical gaslighting. These remarkably high statistics do not account for the intersections of those minorities.

    Medicine is often not disability-informed; it is racially biased and focused on thinness, and therefore potentially harmful. People like us need a holistic approach to the body, one that incorporates lived experience, specific embodiments, and personal access needs and care. There is a need for a coherent and integrative view of our bodies, one that includes diversity and actively questions the norm.

    None of my queer, trans, disabled, neurodivergent friends, or friends of colour were surprised that this was happening to me. All of my invisibly, chronically ill friends and fellow tummy warriors nodded their heads in recognition. Gaslighting is especially violent for those with invisible illnesses. We fall into a trap produced by Western medicine, where atypical bodies are treated as black boxes — or worse, as Pandora’s boxes — not because they are unknowable, but because they were never properly studied in the first place. Diagnostic logic is built around what can be seen: what appears on scans, charts, and images, all calibrated against an idealised body, male, cisgender, thin, able-bodied.

    I would like to point out here as well how fascist regimes, and other political ideologies, have historically co-opted health and the ‘perfect body’ as vessels to maintain order and structure through the embodiment of regressive, conservative, and fascist politics. Anything that deviates from that template becomes illegible, dismissed not for lack of suffering, but for lack of resemblance to the norm. Michelle Murphy describes in her book Sick Building Syndrome and the Problem of Uncertainty how illness is dismissed when it cannot be measured. We have known this for a long time, as almost all of us have experienced it as well. Doctors do not believe us and blame our very existence and the bodies we carry. Whether they are fat, in pain, flared up, Black, trans, queer, or disabled, it must somehow, somewhere, be our fault, right?

— And maybe, I dare to say, not only God is dead, but Hippocrates as well.

I kept looking for answers.

    I am trained as an art historian with a degree in gender studies and feminisms, which means my work is to question political, economic, social, and cultural systems of oppression, but also to read through their visual and material traces. Art history gives me a particular skill set to analyse images, spaces, and built environments not only for what they show, but for what they reveal about the conditions that produced them. It has trained me to see how the way images circulate is never neutral, but deeply entangled with power, ideology, and history. I know that medical science is built upon the idea of a white, perfect, cisgender man, and medical science has built the white, perfect, cisgender man. Much like Leonardo da Vinci’s Vitruvian Man, ideals are shaped while, at the same time, medical progression has come at the cost of violence and death in many marginalised communities. The discipline of gynaecology has been built upon violence inflicted on enslaved Black women. Eugenics were framed as ‘medical progression’, legitimising the genocidal mass murder of disabled people during the Second World War. The AIDS-crisis framed queer people. Obesity has been medically constructed upon little more than stigma. I often imagine it as a mass ornament of Tiller Girls, can-canning through hospital halls with fake smiles and feathers, dancing towards their own ignorant and taught conception of ‘health’. At its core, in this current post-capitalist age of Big Pharma, Ozempic, and a boom of healthy lifestyle coaches, the main goal of medical carousels is not to truly heal people, but to fix them up within our own visual standards of ‘health’, while simultaneously gaining a shit ton of money. The cynicism I have developed, from being a child with four leg-lengthening procedures to a queer adult with a hurt tummy, has made me convinced that, at its core, medical science’s main goal is not care, but profit. And maybe, I dare to say, not only God is dead, but Hippocrates as well.

    A big part of my thinking was shaped by Mark Fisher’s Capitalist Realism, and his other writings, where he describes capitalism as a system that cannot be imagined away. It is an atmosphere we breathe and live in, wherein every critique of it gets absorbed — as if capitalism were an ink blot, bleeding into every possible piece of paper. If capitalism is the atmosphere we live in, it also breathes into Western industrial medicine. As Western medicine, and our medical industrial complex, are part of that system, they have no interest in caring if it is not monetizable. Hospitals run on ‘efficiency protocols’, only the most necessary tests are done, and despite the welfare state we live in, healthcare is also being sold to us. It absorbs and hijacks our language of care, wellness, and empathy, and redirects it towards consumerism. Think of the many mindfulness apps and health-tracking devices we all — and I as well — use. Health, or more specifically ‘feeling healthy’, is a product to be sold and consumed.

    Going even further, the idea of capitalism as an almost all-consuming and intelligent system is not far off. Controversial philosopher Nick Land uses AI as a parallel to explain how capitalism and its systems of oppression function as a ‘hyperstitional’ force with its own logic, feeding on desire and computation, growing and accelerating to a point where it is beyond any human grasp. We have no control over it anymore. Applying this to the Western medical industrial complex, medical science, fuelled by capitalism, denotes the idea of a larger matrix that is no longer human-centred, but absorbed in telos and efficiency, data extraction, and techno-optimism. To prove my point here, think about how controversial technologies like CRISPR, AI-assisted cancer screenings, or NIPT tests are all deeply rooted in optimism and profit. They often surpass ethical or moral considerations. We have pumped up the machine and now lost control, and if we do not deconstruct it, we rush towards a re-evaluation of modern eugenics and hyper-racist designer babies for the wealthy.

    The Western medical industrial complex is not concerned with the individual question of what it would mean for us to feel ‘healed’, but with what could make us assimilate more closely to whatever impossible standard we have created for marginalised, indocile bodies. What it means to be ‘cured’ or ‘healthy’ is rarely put into question, and the machine keeps on running because it must generate profit, regardless of its collateral damage. 

    Yes, I am angry. I am furious. We, as marginalised bodies, end up as little Davids throwing stone bricks at the big medical Goliath.

3. The Medical Machine and its Consciousness

    In the ER, when my stomach pain could not be explained, the caretakers all performatively and fleetingly asked whether I was ‘under a lot of stress’. And whenever I answered that I found their attention to stress a bit stressful, they assured me they took my mental well-being seriously, but I perceived it as nothing more than virtue-signalling. No one offered me care for the stress itself. Instead, they treated only the immediate symptoms. Their words suggested stress mattered, but their actions dictated otherwise. Which left me wondering: Is stress profitable? Is it a monetizable diagnosis or does it only expose the flaws of the machine, and must therefore be swept under the rug?

    I recognise these premature questions as obligatory, policy-confirming gestures, where, in the end, there is no true intention to invest care in how mental states can influence a failing body. I again conclude this as a symptom of a treatment machine that forces caretakers to live in cognitive dissonance in order to survive their own position within the machinery.

    They did not make a plan in the ER to truly heal me. They sent me home, suggesting that stress was something I was to blame for and should fix myself. No doctor intended to help me relieve my stress-related complaints by offering a referral to a psychiatrist, therapist, psychosomatic diagnostic department, or any kind of stress-related healing trajectory. I felt gaslighted as I was told that ‘they take my complaints seriously’, yet was subsequently sent home without any further help, advice, or potential solutions. They sent me home as if stress were something I had to solve on my own.

    I went home feeling alone, thinking I was broken and that I had to fix myself. I felt as though I had done something wrong and that getting sick was my own fault. I did not know what was wrong in the first place, but nevertheless, it was framed as my own responsibility to fix it.

4. Doctors are Quacks

    As a disabled, queer, and autistic person, I became a street-smart professional in reading my own lab results and visual imagery, and I speak fluent anatomy. I became my own doctor. A last resort that many others like me, who live in different bodies, end up turning to due to the lack of finding the proper specialist. At a certain point, I got so desperate that I ended up listing all my symptoms and their fluctuations into ChatGPT, asking it what it thought could be a possible diagnosis and how I could get them tested. I spent hours on the internet trying to look for a diagnosis, while my environment suspiciously watched me trust Dr. Google. The poetic symmetry did not slip me by: shifting from one non-ethical consciousness to another, searching for the same solution to feel at home in my own body again.

    I am sitting at the opening talk of the festival as Róise Goan shows us a small fragment from the 1979 documentary Fat Underground, directed by Marge Dean. ‘Underground systems of recommendations,’ she explains, ‘sharing resources and peer-reviewing healthcare professionals are fundamental to finding the right care. Trusting others you do not really know, based on similar lived experiences, to help find a safe and good place to have your body taken care of, is a common practice in fat activism.’ I am sitting in the audience, and I nod in recognition. This trust is unique and specific to marginalised bodies and leads to underground networks of knowledge distribution. It happens among disabled peers as well. I have seen it among queer and other communities too. A quiet whisper network of resistance, hoping to hide from the big capitalist and medical bully.

    I, too, turned to my peers on social media by asking around for help. I had friends recommending doctors to me, advising me on which tests to ask for, and giving me the private phone numbers of their own doctors. They gave this to me without any questions, recognising the despair I felt, and often because they themselves wished they had had someone like them helping them when they were on their own quest. At a certain point, after the umpteenth disappointment with ‘regular’ Western medicine, I even explicitly asked them to give advice on possible ‘alternative’ options. This is where I entered the world of what we generally call ‘alternative’ medicine.

    Historically, we have lived for centuries in Western Europe where medicine, alchemy, astrology, and spirituality went hand in hand. We have treated people through knowledge systems of the four humours, now long and rightfully debunked, but ‘holistic’ in the sense that they sought to balance the whole body and soul. The seventeenth-century rise of medicine in the West, through a complicated confluence of the rise of classification, the invention of the microscope, and religious schisms, set the fertile ground for how we view the body today: like a biomechanical machine, with broken parts and anatomical anomalies. Through this Cartesian dualistic approach, the separation of the body and the soul, the body became a machine, and the soul seemed forgotten or dismissed as ‘unscientific’. This resulted in the erasure of long histories of herb knowledge, paganism, alchemy, spirituality, and knowledge passing, often practised through or by Black women. I am referring here to what Silvia Federici writes in Caliban & The Witch, where she describes how what politically defined a witch was much more often her threat to the rise of capitalism, rather than her actual healing power. Similarly, colonial powers deliberately undermined Indigenous medical systems both to consolidate political control and to create markets for Western pharmaceuticals, maintaining stability, financial exploitation, and Western dominance.

    I often tell my non-disabled peers that being disabled requires some serious, what I call, MacGyver skills to create your own solutions with often with little to no resources. We, marginalised bodies, have always been experimenting. We mix remedies at the edges of legitimacy, crossing in and out of recognised science like witches at a threshold. We press osteopathy into wounded flesh, swallow supplements for autistic survival, read tarot to map the exhaustion in our bones, cast spells against CPTSD, and inject ourselves with Methylene blue, a glowing dye, blue as bruises and oceans, chasing relief from Long Covid’s ghost. We too are desperate to heal. We too are obsessed with ‘healing’. Yet the big difference is that we have all been witches all along. We whisper spells of doctors’ private phone numbers and DIY-tricks to find relief when no one believes us. The underground organisation, shared practices, and knowledge distribution are our witchcraft. This is our magic.

    Western medicine shows an epistemic violence, in that whatever might be used for profit is absorbed into the capitalist Western industrial medical complex, while at the same time delegitimising all non-Western knowledge systems. ‘Other’ healing opportunities are framed as irrational, outdated, or ‘folklore’ by the Western-made standard called ‘science’, framing Western medicine as the universal, monolithic standard.

    The capitalist blob called Western medicine consumes whatever it can use to enforce its own grip on profit, while at the same time flattening any diversity in treatment. It creates the illusion that there is only one option — a false binary of what is ‘right’ and ‘wrong’ — where the entire domain of non-institutional medicine is either dangerous woo or expensive lifestyle branding.

    At the same time, New Age capitalism is a symptom of the same oppression, absorbing health language through white, skinny bitches fluttering their sage around, claiming closed practices of non-Western medicine for their own benefit. When you ask a disabled person if they have ‘tried yoga’, you are not being helpful. You are participating in a long tradition of silencing. Because yes — of course we have tried yoga already, and the suggestion functions not as care, but as a polite way to make our suffering invisible to you. As I explained earlier, capitalism works in such a way that it absorbs whatever it can turn into financial gain and its own confirmation as ‘the only option’. It is exactly the point to feel pushed into a corner when considering options outside Western medicine.

    I came to understand this while drowning in confusion, unable to distinguish between a trauma-informed, holistic approach to my symptoms and an overpriced quack cloaked in the aesthetics of Instagram wellness.

***

    I have met confusing situations in this search, where I often lost clarity and hundreds of euros in search of help.

    I had a neurologist prescribing me supplements for my autism while asking whether my physical disability was the result of incest. I had two appointments with a lifestyle coach advising me on all kinds of — what Flemish readers would understand as tante Kaat-like, or to the English readers Gwenneth Paltrow lifestyle gimmicks: drinking pure apple cider, using coconut oil as mouthwash, and scaring me into quitting my medication because I would develop dementia later in life. When I did my research, I found out in three clicks that there is no scientific proof for any of these claims. A self-healing therapist named Ingeborg, who also offered astrological chart readings, told me that all my trauma and illness was predetermined at birth and suggested that my disability was the result of an almost cosmic inheritance. She claimed something must have happened to my great-grandfather in West Flanders during the First World War. She was one ancestral regression away from blaming my four-toed foot on a great-grandfather who misfired in a trench and sent the bullet ricocheting straight into my DNA. 

    Growing up disabled, I was surrounded by able-bodied people searching for a ‘reason’ why I was disabled, as if that causality could protect them. While I knew that chance and luck played as much a role as anything else, and that their quest was really about reassuring themselves that my fate could not be theirs. I can quickly identify these practitioners as not fitting for me. My activism empowers self-awareness and inner disability activism shields me from this, politely said, bullshit. Their need to explain my disability was less about truth and more about drawing a line between their ‘normal’ and my chance-born difference. Many people do not recognise the constant emotional labour — and let us be honest, harassment, I have to endure whenever I meet healthcare workers. I continuously need to keep both myself and them in check about how to deal with my disability in their medical practice. All of this did not lead me to any kind of relief, although I can confirm it caused hilarity between me and my fellow disabled peers. It was crip comedy gold.

— To heal is a political practice.

But jokes aside, what I would have needed, as a queer, disabled person with a hurt tummy, is what Boaventura de Sousa Santos calls ‘epistemological pluralism’ in his book Epistemologies of the South: Justice Against Epistemicide. There is a need for  a coexistence and recognition of different knowledges. I needed trauma- and disability-informed care with attention to, and resistance against, the grip of colonialism, patriarchy, ableism and capitalism. Instead, I was drowning in different types of medicine, being tossed from opinion to opinion, lost in a labyrinth, burning through my money.

Healing is a political practice, and if scientific proof is the only qualification for cure, people will not heal. Neither will throwing desperate people into a figurative marketplace of charlatans, miracle medicine, and Madame Soleil.

5. Fire in my Liver

    I ended up finding an acupuncturist across the street from my physiotherapist. She was kind, empathetic, and listened to my story while I had my wrists out on the table and my tongue out for her to examine. She told me that according to traditional Chinese medicine, I suffered from liver fire. Liver fire is a condition in which an excessive amount of heat, caused by an imbalance in my flow of energy (Qi), has settled in the liver. It caused all my symptoms, including the anger, frustration, despair, and general emotional malaise I was feeling. My liver was on fire. I was burning from the inside out, my body restless and overheated, chaos rippling through my entire abdomen — my stomach, my intestines, everything in turmoil. I imagined myself glowing red, consumed by a destructive heat, carrying more than I was ever built to hold, like an engine pushed past its limits, revving into overdrive just moments before it shatters. And for the first time, I had the feeling that something made sense.

    What specifically helped me with this approach was the story that was built around the complete experience of my bodymind. It connected my own mind and body. It explained everything I was experiencing to me in an accessible, complete, empathetic, and maybe even poetic way. I could now reorganise my life towards the care I wanted to give to myself, focusing on extinguishing the fire I was feeling.

   And there I was, lying on the table at my acupuncturist, who understood that something was missing. She knew Western medicine fell short and decided to take matters into her own hands. As I was lying there, covered in needles placed in the most curious places on my body, and she left the room, a tear traced its way down my face as hunger finally stirred again — the first in months. I felt a gentle ache for food, for nourishment, for life.

6. Feeling Something in my Bones

    My acupuncturist made me understand that my body wanted to set the world on fire. I had a fire in my belly and a stone in my stomach, and I wanted to warm myself by the burning wreckage and listen to the crackling edges. What I felt was anger, fury — a desire to dance at the edge of the flames, masking a deep sadness and ultimately … grief. I was grieving. I had been pushing down and away deep feelings of disappointment, and so I found myself mourning the burning while it happened. I had been pushing my own body, with good intention, to its breaking point, and finally the house with burning beams collapsed, leaving me standing in my own ashes.

    What I did not yet understand was that the fire I aimed at the world had no exit. With nowhere to go, it turned inward. The fury I carried, albeit righteous and justified, began to scorch my own body. I mistook endurance for strength and pressure for purpose. I was feeling something in my guts. I felt it in my bones, and now I understood how it presented itself in the bodily house I am living in. The anger I had towards the world had consumed me. My body learned the cost before my mind did, absorbing grief and rage that was never meant to carry alone, until the fire I lit for survival left me charred.

    A couple of months earlier, I had met with a friend, a fellow queer and griever. We chitchatted about life, our dead partners, and the troubling state of living in this capitalist society. He told me how, after enduring an extensive amount of grief and a professional or ideological loss, he too developed symptoms as well, leading to a diagnosis of myocarditis. His heart turned to stone and literally broke. It became infected because of the heartbreak he experienced, layered and continuous, in his life. I listened to him closely as we both were bewildered by the fickle things our bodies are able to do, and by how much language exists for bodily experience, yet how often we ignore the language our bodies speak to us.

***

    The beauty of this alternative and demonstrative thinking is that it opens up a different way to talk about health. One that is attentive, holistic, and possibly poetic, just like my friend and I had experienced. Arthur Kleinman writes in his book The Illness Narratives about the difference between disease — the biological condition, and illness — its lived experience. He illustrates the importance of cultural beliefs, stories, and social context in shaping how we experience and understand illness. By making this argument, he offers an opening to integrate the soul back into health.

    This re-turning to history — going back to the Cartesian divide between body and soul, and integrating it back into the understanding of the body — made me realise that we did not only separate mind from body, but disease from illness. We have lost the meaning of our illness and are now looking for our soul again. Think about how often people find themselves longing for and worrying about a reason why they got sick in the first place. I have written about this before in my book Een Huis Dat Pijn Heet, as I believe that grieving, loss, and impairment — and ‘making sense’ of them — are not questions of ‘Why did it happen to me? Why is this happening?’ but rather questions of ‘What stories am I part of?’

— A body in pain is a body that craves expression.

    We have known for a while now how language deteriorates in moments of intense pain and trauma. It breaks down into cries and moans as we try to grasp even the slightest conception of what a major life-changing event feels like for example, experiencing a traumatic loss or inhabiting a body in severe pain. Elaine Scarry writes about this in her book The Body in Pain, The Making and Unmaking of the World. She describes how pain resists being fully communicated and understood. But despite its uncommunicative characteristics, art, poetry, and creative expression have always offered a way to shape suffering and connect with others. I have made this argument as well in my own book. A body in pain is a body that craves expression.

***

    It is almost impossible to talk about this intersection of emotion, pain, and illness without mentioning Susan Sontag’s Illness as a Metaphor. She critiques how illness, especially cancer and tuberculosis, has been burdened with cultural meaning and metaphors that shape how we treat those who ‘suffer’ from it. Like Sontag, many scholars, some of whom I mentioned earlier, argue that illness is not just a biological fact, but a deeply personal, social, and embodied experience that resists simplistic or stigmatising narratives. 

    However, where Sontag exposes how metaphors can stigmatise and isolate the ill, she neglects to emphasise the power of personal narratives to restore dignity and empathy. A lovingly suggested shortcoming of Sontag’s work is how closely she flirts with reductionist ideas of illness that overlook the embodied, lived realities of sickness and disability. Others have suggested that pain’s inexpressibility demands new modes of expression beyond dominant medical discourse, and therefore offer a way out. Sontag seems to hold a perhaps fatalistic idea of being sick. And for an ‘objective’ academic and essay writer who refuses to write about herself or her own perspective, this lack of hope — which I ultimately believe it is — reveals, in itself, much about her own personal struggle with an ailing body.

    This is the point where the arts show huge potential. I believe creating something can be a healing practice for building narratives around illness. The arts have the opportunity to spread awareness, influence policy-making, and, in the end, soothe and support audiences. I often paraphrase Leah Lakshmi Piepzna-Samarasinha’s conception of ‘prefigurative politics’ in art, she writes about in Care Work: Creating Disability Justice. Art, as a practice, opens up the idea of a world where the revolution has already happened. It offers us the dream of change and ideology. Rita Charon writes about this too in her book Narrative Medicine: Honoring the Stories of Illness. She coined the term ‘narrative medicine’, which integrates close reading, storytelling, and empathy into clinical practice. Listening to patients’ stories improves their care, fosters empowerment, and even enhances the quality of care itself. Approaches to care that respect our stories create a better context for care, frame an holistic approach, while defying the lurking trap of profit. Hippocrates wants to create art.

    The arts have often been a site of resistance, which is why I got into them in the first place. They offer a potential countermovement against capitalism, and thus against capitalist medicalisation. If practised attentively, we can create without wanting to monetise. Art is futile, and therefore extremely powerful and life-changing. Artistic practices can expose, critique, and destabilise dominant narratives that prioritise profit over care, opening up alternative ways of knowing and being that challenge capitalist logics. They also offer a chance to reclaim embodied experiences of human subjectivity, and reclamation demands a shift from mechanistic, profit-driven care towards attentive, empathetic modes of healing. This shapes the basis for a potential collective consciousness of solidarity and creating political relevance supported by arts programmes in cultural institutions. As I remember, slam poet and activist Una Mullally mentioned: ‘You don’t know sometimes what you are exactly fighting for. Sometimes you want rights for one thing, but it bleeds into so many other groups.’ Our creative drive is one to change, to heal, to soothe — not just for one problem, but for society in general. This is why I love my job, and why I deeply believe that all art is political.

    I consider my own job, as an artist, writer, and researcher, a core practice of trying to change the world, and I often find myself extremely proud of my profession. I think of my work as an artistic practice of reshaping the world, however slightly, however quietly. Often, I feel immense meaning in this vocation — the sense that what I create might ripple outward, reaching someone who needs it most. And if what I do shifts something, even for one person, then the work has already fulfilled its purpose. I am sure that what I do is what, in layman’s terms, would be called ‘destiny’. I see the poetry in being the crying child in a hospital room who has now made it their life’s work to soothe others. And I consider myself meant to do this.

7. To feel the heat of the sun

    Still, we have not yet come to the point of why I am sick. Why I got ill. It has been almost a year now since I have suffered from the scorches of my own body, and I believe the causality of my body collapsing has been what is called a perfect storm. I believe it to be an accumulation of many little things that became unbearable to carry. And like any storm, it could have been predicted.

    I am — what in the vocabulary of my favourite study field is called — ‘able-disabled’. I have a congenital disability situated in my right leg, but I am still able to function without any big, disabling obstacles in society. I do not use a wheelchair. I can use stairs, although I do not like them. I am capable of executing a job, and I can fairly do anything in my life independently and without the help of a caretaker. If I wear long pants or anything that conceals my leg, I pass as someone completely healthy and functional. I live a, according to the terminology, fairly able-bodied life. Even more, I am perceived as a high-functioning and high-masking autistic person, according to neurotypical norms. People rarely encounter my neurodivergence as something problematic. To most, I am just a funny and quirky person, who loves to philosophise about theory, queerness and disability.

    The term ‘able-disabled’ was coined by Tanya Titchkosky, who identifies the ‘abled-disabled’ as disabled individuals who both aspire to normative able-bodied standards and are seen as having the best potential to achieve ‘normalcy’ through adaptation or overcoming disability hurdles. Titchkosky further states how we, the able-disabled, are perceived as self-sufficient, silently reinforcing neoliberal ideals around individual self-management, productivity, and moral worth, with or without that intention. This idea of wanting to function in society with a disability and shining like a hero is what is called an ‘overcoming narrative’: a triumph over impairment through willpower or personal effort, framed as encouraging to society at large. To many people, I rightfully fit within that frame.

    And while I move through the world as someone who passes — almost normal, almost untouched — there is a quieter, more brutal reality unfolding just out of sight. Like many of my disabled peers, every day my body is classified, monitored, and controlled by policy. I have argued so far mainly about the horrors of the Western industrial medical complex, but medicine is not the only care system we experience. A large responsibility for care also lies with the government. And just like Western medicine, the government is a punitive and controlling system, harming marginalised bodies and hiding them from the peripheries of absolute and radical care.

    Social services demand proof of every detail of my life. They legitimise controlling and double-checking the reality of my living circumstances, down to the underwear in my drawers, out of fear that I am ‘cheating the system’. I have no marriage equality as a disabled person. If I marry or cohabit, I lose my disability income. In Flanders, this rule is called de prijs van de liefde — the price of love. Theorists like Michel Foucault would call this disciplinary welfare, where support is inseparable from surveillance. When I apply for housing, my disability income, increased compensation, and my position as a disabled person are stigmatised as proof of being a ‘profiteer’, not a participant in the resources that the government offers people like me. They are also framed that way, all official governmental communication, even though mostly unintelligible to most, phrases that disabled people enjoy these disability benefits. These stereotypes are no accident: they are state-sanctioned narratives of neoliberal ableism, where disabled people are only valued if they transcend disability and embody independence, while the system simultaneously maintains bureaucratic structures that actively discourage us from even trying.

    The Belgian welfare system is a textbook poverty trap: benefits are withdrawn as soon as income rises, ensuring that work does not lead to financial stability. Disability policy here is not designed to help us thrive, but to keep us dependent, grateful, and poor. These are violations of human rights for which, as of the time of writing, Belgium has never been held accountable. This contradicts the rights enshrined in the UN Convention on the Rights of Persons with Disabilities, a treaty Belgium ratified in 2009 but has consistently failed to fully implement. Belgium continues to be regularly critiqued by the UN Committee for its lack of national plans, poor coordination, and persistent barriers to inclusion, yet no binding sanctions enforce change, and the realisation of these rights remains distant.

    Secondly, as a way to make ends meet, many of my disabled peers turn to volunteer work, art, charity work, or labouring at home, taking care of the household. Decades of feminist struggle have forced recognition of care labour, gestational labour, and unpaid work in the home. We have crystallised these struggles into concepts like ‘the second shift’. Many feminists have demanded recognition and equality in household labour, as financial independence is one of the most important preventers of domestic violence and abuse. And yet, we continue to abandon those who are most precarious, pushing disabled and ill people into endless cycles of unpaid labour while denying that labour the status of work at all. Government policy still defines labour exclusively through its usefulness to a capitalist, tax-generating, neoliberal economy. Anything that falls outside that logic — care, survival, maintenance, recovery, is rendered invisible. The limited body of research on domestic and care-related violence against disabled women consistently confirms higher rates and a heightened risk of abuse and extreme precarity within the home.

    Somewhat strangely, marriage equality, wages for housework, and domestic safety evaporate when you are a woman with a disability. It feels like we deserve to live in scarcity.

    When I speak about the term ‘able-disabled’ and my critique and suspicion of its use, I aim to point out that, whereas this term is intended as an acknowledgement of ability, it often creates a false advantage framed in physical, cognitive, and mental abilities. I have seen this terminology travelling around many feminist and disability scholars. People with often fairly moderate, medically recognised disabilities, who are indeed very capable of living their lives independently, can escape specific forms of violence in an ableist society. Nevertheless, it often feels like a flagellation complex of acknowledgement-privilege Olympics. But I understand them, because I consider myself one of them. I too experience the need to be politically correct and acknowledge myself as ‘lucky’ — the layman’s term for privilege — when I work with others who are also disabled.

    Feminist scholars and activists often have to conclude that ideas and concepts in theory do not translate into practice, or that practice debunks the theoretical thesis. I believe this term ‘able-disabled’ is one of those terms. I believe this term to be dangerous. It deprives us of the possibility to sit down with our bodies, in their individual uniqueness, and be able to grieve the societal and policy-designed violence they experience. As a friend once said while I tried to explain this point: ‘It is self-harm disguised as privilege acknowledgement.’ He talks about how it flattens hierarchies into something that is no longer useful. It loses its texture, the relief, and every dimension we need to debate disability with nuance. And I think he is right. My friend Casper and I often philosophise about these niche disability and class-oriented abstract structures, and he has been here with me for years — especially over the past couple of months while I was suffering from my hurt tummy. He, too, helped me see both the relief and the mountain of rage within my disabled experience: one that often wants to feel the heat of the sun, yet remains a secret sorrow.

    I appreciate what Titchkosky suggests, where ‘able-disabled’ hints at how certain disabilities and their convenience are framed through neoliberal ideas of self-sufficiency and ‘overcoming’. Yet I am worried that the precarity of dividing those with different bodies through the cracks of capitalism into those who should consider themselves lucky reintroduces a binary through neoliberal thinking. It valorises individual over collective struggle and contributes to internal pressure around performance and comparison among those same disabled people. At its core, I think it celebrates resilience while codifying ableism.

    I imagine it mediated through a mirror — the mirror of society, one that insists on reflecting a ‘normal’ person back at me. I stand before it, adjusting myself, trying to find the right angle where I might look like the kind of person they hire, they house, they love. But the longer I stare, the more the reflection warps. The glass begins to crack under the tension between who I am and who the world insists I should be. Each fracture catches the light differently, revealing a truer, messier version of me. Not broken, but refracted. It is not my body that is distorted, but the mirror itself. And it is literally gut-wrenching.

8. The Almost-There Syndrome

    I have never met — and to that I count myself — an ‘able-disabled’ person who, like Icarus, flew too close to normalcy, whose feathers shrivelled up by the heat. I have seen so many people completely collapsing under the pressure of ‘playing the perfect cripple’. I too suffer from the ‘almost disease’. The Almost-There Syndrome.

    I  would like to coin a new diagnosis. I will call it Neoliberal Resilience Disorder: a compulsion to overcome until collapse. Or maybe it is Proximia Chronica: a chronic nearness to normalcy. Or maybe I will call it Liminal Fatigue: an exhaustion born from constantly standing on the borders of belonging. And perhaps I will just call it a Societal Inclusion Illusion: the illusion of having a seat at the table, but never being fed. A disease with symptoms of yearning, persistent striving, self-surveillance, and, as its worst symptom, a sense of hope.

    I have spent most of my life in these liminal spaces of identity — close enough to the norm to be overlooked, far enough from it to be erased. As a child with an invisible disability, I learned early what it meant to be dismissed because I did not ‘look’ disabled. As an adult, that pattern continues. I am bisexual, yet bi-erasure swallows that part of me. I am not fat, but have never been thin, carrying the residue of a mother who dieted her whole life. I am polyamorous, yet my long-term relationship reads as straight and monogamous to most of the world. I am confident in experiencing my gender as androgynous and agender, yet most people still see me as a cisgender woman, or clock me as a butch lesbian at best. And while I am white, I have seen many friends and peers of colour and mixed racial identities struggle, always feeling that at least a part of them is considered invisible.

    Again and again, identities hover just out of sight, passing as something simpler, safer, more palatable. I am speaking here about the quiet violences of being perpetually misread, of living in bodies and lives that are ‘almost’ seen but never fully recognised. I would like to take the stance here to connect them closely to feelings of exhaustion, consumption, and collapse.

    Many of us, living in marginalised bodies, know this pain. A very specific ache of knowing there is a life out there you know you deserve, yet one that remains unreachable. The heartbreak of knowing life owes you something, but it never quite finds its way to you. Society makes us sick not by accident, but by design — holding us back just enough to keep us alive, never enough to let us live.

    It is this grief and disappointment that runs like poison through my veins. The anger and resentment gnawed at me from the inside out. Grief housed itself in my body like a storage unit for unspent violence, and the stress burned like acid through my muscles. Nobody within the Western industrial medical complex noticed. No scans, blood draws, echos, or tests could track the resentment and disappointment flowing through my body — the big fuck you! I was constantly screaming.

***

    So much about the art world is about making yourself seen and visible. It is one of our most important strategies to trick people into remembering you and considering you important enough to spend money on you. It is within this competition of visibility that this pressure amplifies for people living in marginalised and often overlooked bodies. My art, the very thing I believe I live for, is complicit in making me sick. From my stomach to my bones, I feel the pressure of participating in this artistic beauty pageant and how it deepens the ruts and grooves of how invisible I sometimes feel. I live for my activism, for using my voice and creating change, so much that I apparently chose to harm myself doing so. I love the world so much, I want to see it burn. The promise of stability, recognition, and success I am promised as a disabled artist was eating me up, like what Lauren Berlant coined as ‘cruel optimism’.

    In the art world, burnout moves like a reaper through the cultural fields, leaving exhaustion where creativity once grew. The achievement culture and money-making model in the arts rushes us through our artistic practices, and many of us fail to keep up with its pace. And like always, vulnerable bodies are the first to fall.

    I do not think we pay enough attention to, or understand, how severe this problem is and how deeply it is rooted in the consequences of the same power dynamics, systemic violence, and discrimination I have been writing about so far. The same capitalist logic that infects systems of care and safety has also seeped into creativity, reshaping and hollowing out our ideas of what it means to care for one another. Care is converted into productivity, creativity into profit, and everything accelerates at such speed that we are no longer steering the system. We are suffering from a sector that has turned durable artistic processes into gig projects, funding applications into punitive systems for productivity, speed, and result-only thinking, and many organisations are forced to focus on staying alive — not starving as their funding is cut — rather than flourishing through the governmental support they should be provided. We are no longer in charge. We are being dragged along by it.

    For us, artists, our artistic labour is inseparable from our personhood. Our ‘yes-we-can’ mentality drives us to achieve, and at the same time pushes us into exhaustion. It is a practice defined by ideology and belief in societal transformation that turns into a place of self-exploitation, self-harm, and destruction for the sake of our craft and our own ideology. It is one of the reasons why so many marginalised bodies find their way to the arts, and it is also why they are disproportionately harmed within it.

    Byung-Chul Han writes in The Burnout Society about how, unlike classical exploitation imposed from the outside, burnout and exhaustion emerge because people implicitly agree to exploit themselves, in the name of passion, meaning, and creativity — especially those working in emotion, creativity, care, and intellectual labour. Yet, while I believe this reasoning to be extremely valuable, I would like to critique this idea of ‘choice’ and question the supposed agreement to exploitation by returning to Mark Fisher’s ideas of capitalist realism. We are indoctrinated to believe that achievement means freedom, but the virus called capitalism infects our practice with no alternative. It has never been anyone’s choice to exploit themselves. As Mark Fisher reminds us, under a system that insists there is no alternative, self-exploitation becomes a condition of survival, not a personal failure or psychological weakness. For precarious workers like artists, the pressure to over-identify with labour is not voluntary but structural. Han describes the mechanism of burnout, but Fisher reveals the trap: we push ourselves to exhaustion not because we are free, but because we cannot imagine, or access, another way to live.

    Secondly, and equally important, cultural institutions are far too often unaware of how their ideologies and beliefs in better futures are undermined by their own decisions around profit and artistic direction. Art about illness, disability, queerness, decolonisation, and related topics turns the labour of an artist into more than merely expressing pain. It becomes commodified. A system like a cultural institution profits from our visibility, while leaving our precarity largely untouched. We, scorched artists, are not looking for rest and retreat, because when we return to the field, the same conditions that exclude and marginalise remain. Unlike other illnesses — or perhaps precisely because illness, disability, and precarity already shape our daily lives — there is no treatment for the Almost-There Syndrome. It remains structurally unaddressed and unimplemented within institutions, because it does not generate profit.

    And I, too, am complicit. I showed up at a festival about intersectional feminism, choking on my own stomach acid, forcing myself not to vomit on the venue’s vintage tiles, performing connection, ambition, and presence — all while pushing my collapsing body to network, to create, to achieve. I felt too poor for my own social capital. It is the cruelest irony that the very system that sickens me is the one I continue to feed with my art, my energy, my devotion.

9. Crip Cassandra

    I know that what happened to me is that I have a burn-out — but I refuse to use this term. Burn-out has become an umbrella term, flattening the many vulnerable, fragile, and most of all individual stories of collapsing while being almost there. They are all incredibly complicated, layered stories of people neglecting their very personal, emotional, and spiritual needs, and losing the connection to themselves. Pathologising those stories through an instrument of the Western medical complex sweeps the indication of a fundamentally faulty society under the rug. I do not want my experience, or the experiences of my disabled, Black, queer, and fat peers, to be something people can nod to and then continue to ignore. I refuse to diagnose myself in a language that diminishes the scale of what I am living through or forces others into a tidy understanding of an illness that has undone me.

    I would like to refer here to Susan Wendell’s writing in The Rejected Body, where she critiques medical and social models for often marginalising bodies by viewing disability only as a deficit or tragedy. I think her work offers potential in understanding how disability embodies a distinct way of being that challenges dominant norms about health, productivity, and ability. My body, and I, reveal people’s expectations and experiences with the limits of the ‘normal’, opening up new understandings of well-being. The whole Western industrial medical complex is written onto my body, and I refuse to reduce it to a cliché. My scorched body lives like Schrödinger’s cat: collapsed and performing, unseen until someone dares to look.

    My body is Cassandra, the Greek priestess of Troy. My body utters prophecies no one dares to believe. My body speaks of the socio-economic circumstances of marginalised people, even within our own sector: unemployment, bureaucratic violence, welfare traps, and the constant violence of rejection through prejudice and bias — all culminating in an ‘Almost There’ existence.

— Burnout is a collective grief.

    Reframing burnout specifically in relation to poverty, care work, disability, Blackness, queerness, fatness, socio-economic vulnerability, and the many other obstacles many of us experience would offer a far more effective and potentially healing perspective on why we all feel tired all the time. Burnout does not originate in ‘too much passion’, but is birthed in the structural abandonment of those living precariously. As Hannah Proctor writes in her book Burnout: The Emotional Experience of Political Defeat, burnout is a collective grief: a grief for the world as it is, for the world we cannot yet build, and for our bodies collapsing under the impossible demand to fight like Sisyphus for that new world while feeling utterly alone.

    My body, Cassandra, foresees a slow fire — a psychological Centralia mine fire — decades of burning, gleaming through mines and the root-like structures of our own art world. We burn, dancing on our own future collapses. But my body is the seer who is sooner dismissed than ever believed. Even I myself failed, for a while, to listen.

10. Hope is the Thing with Feathers

    The cultural sector and the arts loudly lament their precarity, and as bitter as I might sound, I am thankful for that. As resources are systematically stripped away, the cultural sector is expected to carry the burden of diversity work without the means to sustain it, leaving inclusion both underfunded and politically exposed — a convenient scapegoat for the far right. Projects about diversity and inclusion that fail to be produced are exactly what conservative, alt-right, and extreme-right policymakers want. This is exactly how capitalism works, as there is no profit in the margins of democracy.

    For decades, my disability has been medically considered stable. All the treatments and surgeries feel like a lifetime ago, yet the relational dimension of my disability living in its current world is still constantly changing and crying out for care. My body is crying to belong somewhere. And I want my body to demand more holistic health models that respect the embodied knowledge it carries. My body aims to move beyond ‘healing’ and wishes the same for all others living with the world violently written upon their bodies.

— Art is a rehearsal for the world we want.

    I wish and dream of strategies and ways to survive together. I long for the invention of truly alternative infrastructures of care, peer support, mutual aid, crip time, and a hopeful counter-narrative. My body is fragile, and so is my art. I have been looking for solutions in moments where disabled communities have risen through earlier crises, where communities built their own healing practices in the absence of structural, state-offered, and scientifically constructed care. Art is not an ornament. Art is a rehearsal for the world we want. Art lets us practise the world before it exists. It allows us to build forms of care for one another that institutions refuse to reimagine.

    I believe art emphasises collective struggle, the abyss of nuance, and consciousness as keys to social transformation. I believe it does not only foster solidarity, care for the oppressed, or accessibility for all audiences — I think this is the very core affect required for art to be considered ‘good’. Art without social justice is just decoration. ‘Good’ art recognises shared struggles embedded in capitalist systems and offers imaginative, emancipatory futures. Our work is political, because we are political.

***

    Over the past year, my body’s illness made me forget what this bio-organic vessel was ever meant for: joy, pleasure, and movement. I forgot how to dance, and froze. Pleasure began to feel dangerous. I slipped into survival mode and, for a while, forgot the simple but radical feeling alive.

    We need to frame joy and hope as political tools and reclaim community as narrative medicine. Hope is the antonym to collective grief. Joy and pleasure are the magic for ailing bodies. Daring to dance, in defiance of a world that wants us shut down, is our anarchy.

    I would like to propose, as a closing chapter to this bitter tirade, the practice of joy as a remedy to illness. To feel joy, and to hope, is an incredibly courageous thing to invest in and install in one’s life — especially for those who have been pushed down. To dance on the graves of systems that do not change fast enough is a method of surviving a world that does not accommodate our needs. Hope, for people like me, is not a luxury. It is an essential tool with which to sharpen our words together. It is the torch we keep lit inside bodies that are constantly on the edge of extinguishment, passing it on to one another. It is the refusal of our ‘Almost There’ as an ending.

    Many scholars, activists, and theorists have defined hope as essential to healing. Audre Lorde writes in The Cancer Journals about healing as a radical, intersectional, and political act, transforming illness and pain into collective strength. Caring for the self and the community is a radical act under systems that want you erased. Scholar and one of my favourite feminist writers, Sara Ahmed, writes in The Promise of Happiness about how marginalised people are often pushed and pressured into performing joy, and how true radical joy comes from refusing that demand and creating joy on one’s own terms. José Esteban Muñoz writes in Cruising Utopia: The Then and There of Queer Futurity’ about hope not being naïve but an utopian impulse — a way to imagine futures beyond our current circumstances. At its core, hope is a queer methodology against burning up, and a practice of imagining new worlds and possible futures beyond capitalism.

Yes, the answer to capitalism is diversity. The answer to burnout is inclusion.

    The cure for burnout, loss, and grief is not a three-month vacation. No amount of mindfulness exercises, productivity hacks, or wellness capitalism will save us, because these practices have already been absorbed by the very system that exhausts us. They function as distractions and soothing rituals designed to redirect our pain back into performance and profit, keeping us compliant while the system continues to extract from us, again and again. Joy is what happens when we give ourselves back to ourselves. Joy is not escapism. It is political defiance. Joy is self-defence. When we reclaim the stories medicine refuses to hear, when we fill the cracks in the mirror with gold as we jitter through the ashes of the system that smothers us. To dance in the face of a system that wants you gone is not frivolous. It is a strategy. Burning up does not heal in isolation and self-care. It heals in community and through laughter.

    As Proctor writes about how burnout, caused by pressure and capitalist production logistics, she points out creates bitterness and cynicism. Caused by disappointment, exhaustion, disillusionment, and political heartbreak, we break down and turn inwards. But cynicism is not the end: she writes how it opens onto a new chapter of reorientation, recalibration, gentler forms of commitment, and more sustainable solidarity. This recalibration through joy offers a tactical recovery strategy and a more collective resource.

    Joy that is intentional, slow, collective, messy, and unproductive is impossible to commodify under capitalism. Joy, when it does not perform, does not sell. There is no profit to be made from the pleasure of marginalised bodies when it refuses productivity and refuses to be packaged.

    I understood the big fuck you! my body was screaming — an urge to move, to breathe, to laugh, and to dance. I wish I could finish this text by telling the reader I have successfully conquered my illness and extinguished the fire in my liver, but I have not. It is part of disability consciousness that sickness runs through the body, sometimes without any clear and immediate explanation, leaving us riddled by our own bodies. Nor do I want to end this text with an overcoming arc, satisfying all audiences with a happy ending. My body is still raw, wild, and frustrating. I have no control over it, and I have learned that this is exactly what it is supposed to do.

There’s a post-it above my desk and altar, where I work, with three sentences:

‘Grief is meant to be felt’
‘Your body goes first’
‘Joy is resistance’

I want to end this text by speaking directly to the scorched bodies reading it now. You are not alone. I see you. This was written for you — as a place to be held, to catch your breath, to soften for a moment, and, if you are willing, to step back into movement and dance with me.

Let this tirade be the burning offering to the inferno we are experiencing, and the redemption we desperately deserve. May our ill and painful bodies — docile, poor, fat, colonised, old, disabled, neurodivergent, trans, and of colour, burn the world as we know it, and create from its ashes something that will finally soothe us all.


— Josse (Josefien) Cornette (2025)
written for the Women & Children First Festival - Your Health is your Wealth?!