1. Making the body legible

When I was a child in Chile, people whispered the word cáncer. They whispered it the way one whispers scandal. Or sin. Or contamination. The afflicted name followed in lowered tones, as if uttering it too loudly might summon something untoward into the room. Illness was moralized and rendered spectral before it was diagnosed. In 1986, at 23, when I was diagnosed with HIV in Vancouver, the whispering logic was familiar. AIDS was simply a louder murmur: contamination, judgment, proximity to death. I was not an “innocent victim” like hemophiliacs and transfusion recipients.

If diagnosis fractures prior meanings, reconstruction is not necessarily a restoration of order. It resembles Mary Shelley’s creature: assembled within the laboratory of power, yet returning to its creator not in gratitude but in accusation. I approach autopathography as aligned with community-based research, in that it treats lived experience as a site of knowledge production rather than as data to be extracted; it reclaims authorship.Footnote ⁸ This is not a confessional or anecdotal account, but a methodological one: experience is used not to narrate a life, but to theorize from within it. The subject produced in an autopathography resists medicalization and does not vanish into compliance. It speaks back. My memory constantly changes lanes from hardcore to self-display.Footnote ⁹

My therapist tells me that what I call integration is, clinically speaking, fusion. In family systems terms, fusion names the collapse of boundaries—the tendency to merge roles that would ordinarily remain distinct, to live without compartments.Footnote ¹⁰ In acceptance and commitment therapy, cognitive fusion describes the entanglement of thought and identity, when narrative becomes indistinguishable from self and begins to govern action.Footnote ¹¹ Fusion can generate coherence and intensity; it can also exhaust. It means that when a piece fractures, everything fractures—like Haraway’s cyborg.Footnote ¹²

Therapists also insist I carry survivor’s guilt. I resist the phrase. It is so textbook, and probably too heavy to even bring up. But I recognize the structure of it: the relentless drive to be useful, to justify survival through productivity, to compensate ethically for having outlived others.

Activism becomes vocation; vocation becomes compulsion. Illness is never private; work is never neutral. My body enters the room before my CV does. Fusion protected me. It also made me permeable, which in turn motivated my interest in CBR.

What moves me toward CBR is what we could call a feminine attention to care in the very experience of researching and being researched—its small scale, its intimacy, its domestic logistics: the food, the transportation vouchers, the smudging of knowledge keepers. For me, CBR remains a method that can hold fragments without forcing them into neat variables, a practice that resists drilling into lives for usable fragments.

Thus, my AIDS-dirty body and mind morph across institutions—to be documented, annotated, stored. In some of those rooms, a clinical self is produced under conditions not of my choosing, while my morale resists standardization. Patients are educators and translators.Footnote ¹³ We curate symptoms. We modulate tone. We supply acceptable data. We learn to be strategic, knowing that one wrong inflection can be written as “drug seeking” or “recalcitrant” in the record—labels that do not diagnose but discipline, shaping how patients come to be seen as “difficult” within clinical systems.Footnote ¹⁴ In the age of interoperable electronic health records, such annotations do not remain local; they circulate across digitized networks.

This is not the Instagram self. It is the clinical self—searchable, durable, portable. The Instagram self is curated for visibility, staging fragments to be seen or affirmed. It is not false; it is my selection. Even as a “model” patient, I am freer outside the clinic.

Medical treatment governs my body and what I do with it. Clinical follow-up, adherence protocols, psychiatric evaluations, and wellness scripts produce a regime of the sayable. They shape what counts as resilience, what is coded as pathology, what must be narrated as compliance. Access to care is negotiated; patients are rendered more or less eligible through assessments of suitability and adherence. In late modern medicine, illness is technologically managed and optimized, transforming patients into self-monitoring subjects responsible for their biomedical futures. Survival becomes therapeutic citizenship, where adherence becomes moral worth.Footnote ¹⁵

Benevolence and regulation share a grammar. As Dorothy Smith reminds us, “the relations of ruling are objectified in texts that coordinate people’s activities.”Footnote ¹⁶

My health record does not merely describe me; it organizes me.

2. Disciplined in academia and pleasured at its margins

My mentor says that when they met me in 1997, I was feral. More precisely, I was desclasado—declassed, displaced from the social position into which I was born—and shaped by a ladino cultural ethos: a historically produced mode of linguistic and cultural adaptation that also connotes a strategic, streetwise intelligence formed within colonial and class hierarchies.Footnote ¹⁷ I had been living alone since I was 17, in poverty, under a dictatorship that demanded obedience, silence, and loyalty to one’s assigned place, while also moving through an exhilarating yet heavily policed queer underground. What this produced was a lived, historically shaped sensibility—moving between worlds, reading power, complying and slipping it as needed; I knew how to obey and how to disobey.

This matters for how patients inhabit health systems. Such sensibilities are not idiosyncratic but patterned responses to inequality: people learn to navigate institutions by appearing compliant while working around constraints in practice. For example, among impoverished patients, “double dipping” services or “shopping around” for care—behaviors often framed as misuse—can be understood as pragmatic strategies within fragmented systems, even as they clash with the moralized expectations embedded in multicultural health policy.

Like the clinic, academia disciplines bodies: Productivity metrics, citation economies, grant cycles. Foucault described discipline as producing “docile bodies.”Footnote ¹⁸ The clinic inscribes me; the university domesticates me into submission. Both produce records and CVs.

Both require translation outside their margins, so I become intelligible to myself and to those I love and those I work with in CBR. David Wojnarowicz wrote that contracting HIV meant contracting a diseased society.Footnote ¹⁹ I began my graduate education realizing that I was also being schooled in diseased theory—the kind that renders certain bodies hypervisible as data and marginal as knowledge producers.

If institutions narrate the body, the body performs back.

In Almodóvar’s Todo sobre mi madre (1999), Agrado itemizes her surgically constructed body and calls it authentic because it resembles what she dreamed: “Una es más auténtica cuanto más se parece a lo que ha soñado de sí misma.”Footnote ²⁰ A trans woman—transsexual in the vocabulary of the time—she speaks openly about being assigned male at birth and about the medical and cosmetic labor through which she has fashioned herself, a fact the film treats not as revelation or problem, but as given. Authenticity here is crafted, negotiated, paid for in installments. There is no origin to return to—only iterations of a self-pursued, adjusted, and sustained until exhaustion or interruption. Against such an account of authenticity, public health, public health scrutinizes sex as risk but rarely as what we dreamed of ourselves—as desire, pleasure, or ingenuity. Transmission is modeled; erotic adaptation is not. As Kane Race reminds us, interventions shape sexual cultures, yet the ledger tracks danger, not creativity.Footnote ²¹ I learned to produce clean data and nonthreatening feelings. I learned that authenticity is not welcomed at the clinic or at the school.

As Preciado writes, we are molecular prosthetic subjects—constructed through pharmacology and biopolitical control—and, I would add, through disability and economic policies that disproportionately affect impoverished patients, non-binary and trans people, and the colonized.Footnote ²² If authenticity is iterative, institutions demand its stabilization. They script bodies into legible forms and disavow what exceeds them. Yet many of us have also learned about our bodies through negotiated vulnerability, calibrated pain, and ritualized trust. In those spaces, the body is pedagogy. In my own terms then, I am not case study but an experimenter, a body-based researcher.

When I presented these ideas in a chronic pain and HIV study—mapping medication, polypharmacy, meditation, athletic training, dance, and BDSM as consensual, self-initiated mitigators and sublimators of pain—a colleague blurted out, “BDSM! That’s disgusting.” The word was not argument but boundary.

If public health deploys a pedagogy of disgust to discipline bodies, kink cultures often reverse that logic. Through consent, ritual, and negotiated power, practices marked as disgusting are recontextualized and sometimes eroticized, transforming stigma into affective intensity or trust.Footnote ²³ What the clinic frames as contamination can become, within the scene, a deliberately staged encounter with taboo.

In my pedagogical practice, teaching such materials requires scaffolding disgust rather than denying it. I introduce students—often cis women and gay men—first to the social construction of disgust, to affect theory, to harm reduction, and to consent. Only then do we approach specific practices. The work is not to normalize every act but to destabilize the reflex that equates disgust with moral truth. As Britzman argues, some knowledge is difficult not because it is obscene, but because it unsettles identity.Footnote ²⁴

Humor helps. Camp, irony, a slightly exaggerated self-awareness, these are not evasions but strategies. José Esteban Muñoz argues that queer performance can repurpose dominant representations through exaggeration without simply reinforcing stereotype.Footnote ²⁵ Humor, in this sense, is not capitulation but disidentification: a way of inhabiting the image without being trapped by it. A joke can interrupt moral panic. Laughter can loosen reflexive disgust. But humor is risky. It can tip into spectacle, making queer life appear as nonserious excess or caricature. In the classroom, I walk that line carefully: not performing gayness for comfort, not dissolving discomfort entirely, but using levity to create space where difficult knowledge can be held rather than weaponized.

3. From sensation to data: the digitized dirty body

If the clinic inscribes and the university disciplines, technology extends that work—making the body continuous, measurable, and increasingly predictive. Where the body is aroused by touch, the clinic cools it into data—AI promising neutrality while every frame excludes. It speaks the language of touch as a cooler echo, safer than the volatility of others, arranging life into numbers and graphs, while lived experience trembles beyond the dataset and pleasure is erased as confounder. Technology can zoom. It cannot decide what the body means or does. I am not to remember fisting as the doctor applies the vinegar wash, inserts the anoscope, camera, biopsy, then cauterization or injection. I split open in the middle into two bodies.

In my pedagogy, I teach how the vertiginous pace of technologies magnifies us and pixelates us at the clinic and in schools in new ways: patient interfaces that have sprouted in every health service, the immediacy promised by telehealth, language-model counselling, self-diagnosis and treatment, and PatientsLikeMe networks. At some point, the body leaves the clinic and is digitized. Digitization, inevitably done by others, the experts, fragments and reframes us—not in ways of our choosing, not in images of our choosing. This is where community-based research becomes an activist method, attempting to bridge digital and embodied worlds without flattening either: as in experience-based co-design, where patients, families, caregivers, and clinicians generate narratives—often digitized—only to return to shared spaces where those experiences are collectively interpreted and reshaped, moving iteratively between screens and bodies in a form of co-produced knowledge.Footnote ²⁶ Increasingly, these practices extend beyond the beeping machines of vital signs toward ways of registering the body’s less visible states—pain, despair, depression, anger, resentment—forms of data that resist standardization yet plead to be counted.

For nearly two decades, I have been in a body framed as “precancerous,” walking the edge of the abyss of anal cancer. The anoscope magnifies my anal canal into high-definition terrain—biopsy, electrocautery, documentation—evidence is produced as understanding is deferred. The anus becomes incidence; muscle rebuilding becomes body image adjustment; years of procedures recode into “resilience” or “maladaptive coping.”

Since the first precancerous cells appeared—one more diagnosis to break my self apart—I have rehearsed for cancer for twenty years, oscillating between “stable” and “concerning”: never cured, only monitored.

When I asked my specialist about sex after one of the yearly cauterizations, the answer was: “It’s okay, no problem”—no discussion of anal sex, fisting, toys, healing intervals. High-resolution surveillance; low-resolution advice.

Screening guidance acknowledges sexual behavior as a risk factor but rarely operationalizes sexual practice within protocols or patient counselling.Footnote ²⁷ Risk is named; practice is not. We can measure recurrence to the millimeter. Modesty still governs the anus; the silence is procedural.

In public health, ethics boards, funder reviewers, and promotion procedures demand serious pedagogy, statistical power, generalizability, or logic models for interventions. They rarely ask what Jann Arden asks pointedly: “How do you numb your skin, after the warmest touch? How do you slow your blood, after the body rush?”, or what it felt like.Footnote ²⁸ What meanings were made in scarred terrain? How does a body eroticize its own inspection? We say “operationalize” when we mean translating sensation into scale, and “control for confounders” when we mean neutralizing complexity.

As one lives such a medicalization and digitization, it is a mix of superstition, folklore, and resistance. In Spanish we say, “Por donde pecas, pagas,” loosely translated as “you pay for your sins where you commit them,” which is tantamount to Bersani’s “Is the Rectum a Grave?”Footnote ²⁹ However moralistic and sinister such a question may sound, it can be reclaimed as funny and sexual. Such practices eroticize my fear, my disgust, and long struggle with precancerous cells and treatment.

If the clinic disciplines the body through measurement, practices like chemsex mark a different kind of response—one that refuses clinical temporality by prioritizing intensity over optimization, presence over prognosis, and resisting the moral logic of medicalization. Harm reductionists remind us that drug use is widespread—pharmaceutical, recreational, normalized—yet chemsex remains singled out for exceptional scrutiny. Why?

In the same vein, chemsex cannot be reducible to “behavioral risk” in my life. It has been not an epidemiological variable but an affective technology—a way of intensifying sensation, dissolving inhibition, and reclaiming a body already mapped by surveillance.

In dark rooms and rented apartments, high on chems, I was not optimizing viral load or performing resilience; I was experimenting with thresholds—of pleasure, of pain, of intimacy, of fear. The very practices that public health codes as excess or deviance sometimes functioned, for me and for others, as improvisational responses to chronic management: a counterweight to the discipline of adherence, a temporary refusal of clinical temporality. If I was prescribed Dexedrine and other amphetamines to counter the harms of chemotherapy and radiation in my worn-out body—if they were enabling me, as they do for many patients—why could I not experiment? If OxyContin is administered in one context and condemned in another, what distinguishes care from deviance? In fact, how many survivors of drug use are already navigating the blurred line between sanctioned medication and prohibited substance? What is approved depends on what sells; what is condemned depends on who is taking it.

Chemsex—alongside prescribed stimulants, pain management regimens, sexual enhancers, and alcohol use—does not erase dirt, risk, or disgust; it rearranges them. It makes visible what governance prefers to keep separate: pharmacology and desire, toxicity and trust, exposure and care.

In the classroom, I situate chemsex within harm reduction—especially in its distinct Canadian history, where drug use has often been approached as public health pragmatism rather than moral failure. For students who can hold that framework, chemsex becomes legible not as spectacle but as negotiated practice. Yet, when the spreadsheet translates chemsex into “behavioral risk,” it evacuates the scene of its ethics, its collective intelligence, and its fragile solidarities. As Race suggests, public health does not simply regulate sex; it participates in making sexual cultures. Chemsex is one such culture—ambivalent, dangerous, and generative—where disgust, stigma, and pleasure are not opposites but materials.Footnote ³⁰

And yet, chemsex unsettles students because it names something larger. We live in a pharmacological society—the regulation of bodies and daily life through drugs. As Preciado argues, contemporary subjectivity is constructed through the controlled intake of molecules. As Rose describes it, a politics of life organized at the molecular level, and Dumit reminds us that in a world where risk becomes disease, lifelong medication becomes normal.Footnote ³¹ Antiretrovirals, SSRIs, statins, Ozempic, Viagra, and hormonal therapies—we are all modulating ourselves chemically. Popular culture sings such facts openly: from the self-medicated heartbreak of pop ballads to the normalization of “pills to get by,” the pharmacological self is no longer deviant but mainstream. In that light, chemsex is not an aberration but an intensified node within a broader culture of chemical management. If my pleasure becomes a confounder, then chemsex becomes a reminder that bodies do not live by risk calculus alone. They live by sensation, by community, by experiment. And those are also forms of knowledge.

4. Reconstruct the body and shatter the social mirror!

If the clinic, the university, and technology discipline the body—making us “patients,” forcing us to stumble and fuse—they are also internalized, carried as a social mirror that shapes how we come to see ourselves.

They say that those of us stigmatized—interpersonally, structurally, symbolically—by chronic or episodic conditions such as cancer, HIV, or mood disorders carry a social mirror in our pockets. More than a century ago, Charles Horton Cooley described this dynamic in what he called the “looking-glass self”: “The thing that moves us to pride or shame is not the mere mechanical reflection of ourselves, but an imagined effect of this reflection upon another’s mind.”Footnote ³² We are forced to learn to see ourselves as we imagine we are seen. We anticipate judgment before it arrives. The social mirror is that internalized gaze—of medicine, policy, lovers, institutions—always on, always reflecting, always arranging.

The social mirror, our own internal Instagram, tells us we are resilient, compliant, and undetectable. It applauds biomedical triumph. It posts before-and after-images. It invites us to celebrate survival as progress. Vanity slips in quietly: muscle rebuilt, scars reframed, sixty-three years old and still desired and desiring (passionate nubile heat becomes daddy vibes). In despair, vanity is not narcissism—it is proof of existence. Proof that the body remains legible as worthy. But mirrors do not remember.

The social mirror I carry reflects only the present surface and eclipses the years of waiting. It does not show the suspended diagnoses, the triage logics, the structural delays. It forgets that some of us have lived in rehearsal for cancer for decades. It forgets that surveillance without cure is not reassurance; it is duration.

James Baldwin insists that nothing can be changed until it is faced.Footnote ³³ Yet, what we face is never neutral; it is already arranged by discourse, by institutions, by the categories available to perception. We do not simply see—we inherit ways of seeing and continually rearrange them, as in the persistent stereotype of the “up-to-the-minute” gay man. If Treichler taught us that AIDS was an epidemic of signification, then that epidemic has not ended. It has migrated, becoming a tributary of today’s misinformation ecosystem. It now lives in protocols, dashboards, impact metrics, and screening algorithms.

In Canada, we know the structural contours of this valuation—HIV is mapped onto poverty, precarious housing, and interrupted labor; cancer is shadowed by income loss and diminished participation. What interests me here is not only the distribution of these burdens, but their internalization. The mirror teaches us to see ourselves as investments: to optimize adherence, to minimize risk, to remain functionally legible within systems that reward stability over complexity.

Survival, then, is not only biomedical. It is economic performance.

It produces the categories through which we appear. As Foucault argues, discourse produces the subjects it claims to describe.Footnote ³⁴ Illness becomes metaphor, a second citizenship.Footnote ³⁵ But, as Rose shows, we are obliged to be free—to optimize, to perform responsibility.Footnote ³⁶ My phobias—including homophobia, gerontophobia, and erotophobia—involve me looking at others with disgust as if they were not me, resisting becoming one more like the others instead of recognizing the assets we share in common as members of a sexualized minority.

Still, as Foucault argues, “where there is power, there is resistance.”Footnote ³⁷ I could have remained safely within disability programs. Instead, I practice risk-aware kink. Power negotiated. Limits articulated. Consent explicit. Weiss suggests that power in such spaces is ritualized and visible.Footnote ³⁸ I read the chart as it reads me. I sit on review panels evaluating bodies like mine. I annotate the annotators.

The body translated is also the body thinking.

Fortunately, bodies remember and accumulate what the social mirror cannot hold.

The cancerous body also accumulates generational and historical resentment—not as pathology, but as time. People living with HIV have medications, U=U exists, PrEP exists—problem solved. Why would we, the patients, bring up the years of bullying, sexual apartheid, serosorting, guerrilla barebacking, except to say to each other and to our bodies: you are not dead yet, you exist? What do we do with the resentment for the time waiting for recurrence? Time coded as coping. Time translated into adherence. Resentment is not dysfunction; it is the residue of being standardized before being understood.

The social mirror studies risk, not residue. It models transmission, not improvisation. It tracks recurrence, not the negotiation of touch after biopsy. It records viral load, not erotic adaptation. It cannot measure what it edits out.

And yet the mirror is not absolute.

If I have been rendered measurable, I have also learned to read the measure. If I have been standardized, I have also annotated the standard. If I have been coded, I have also named the code. The misbehaving body is not outside knowledge—it is its counterarchive.

But counterarchives are not innocent. They emerge under pressure. They emerge because institutional knowledge refuses to hold what does not stabilize, what does not scale, what does not reassure.

In the industrial accreditation complex, many of us remain misread, instrumentalized, circulated as evidence of diversity while denied authority as theorists of our own conditions. We are cited as cases, not as concepts. We are included as presence, not as method.

To some, I appear heroic. To others, a failed subject who refuses closure. I occupy neither position. I remain at the margins—at the link fence, at the border—where recognition flickers but does not settle.

As a teacher, I love my students, but I do not trust the academic structures that claim to educate them. Complexity is celebrated in theory and punished in practice. When institutional precarity damages us, we are told to adjust. When illness persists, we are told to normalize it. When survival exceeds expectation, we are told to be grateful.

This is not “care.” This is management.

Survival, under these conditions, is not liberation. It is maintenance.

The dirty margins are not where disease begins. This essay has argued that autopathography is not a narrative supplement, but a method of knowledge production grounded in embodied experience. Across clinic, university, and technological systems, governance operates not only through institutions but through metrics, protocols, and predictive logics that render bodies legible while narrowing what can be known. What exceeds these frames—resentment, erotic improvisation, and the durational experience of waiting—forms a counterarchive that resists standardization. The misbehaving body, in this sense, does not simply endure governance; it theorizes from within and against it. The dirty margins are where meaning is contested, where bodies refuse to be reduced to compliance, where knowledge emerges from what institutions cannot metabolize.

To reconstruct the body is not to repair it into legibility. It is to refuse the terms under which it has been made legible.

And sometimes, it is to turn the mirror outward—violently, deliberately—so that what has been arranged as reflection becomes confrontation. The misbehaving body remains in the dirty margins—ungovernable and unassimilated.