But I am writing across a gap so filled with death—real death, the fact of it—that it is hard to believe that I am still so very much alive and writing this.
Audre Lorde, The Cancer Journals Footnote 1
I am going to tell this story as I know it. Even now, it is strange to me. I have no idea why I am telling it. I have never been sentimental. Perhaps just to say that it happened.
Kathy Acker, The Gift of Disease Footnote 2
But what does it mean to speak for those who have been refused access to reason and knowledge … With what voice can we speak? … To speak is to invent the language of the crossing, to project one’s voice into an interstellar expedition: to translate our difference into the language of the norm; while we continue, in secret, to practice a strange lingo that the law does not understand.
Paul Preciado, Chronicles of the Crossing Footnote 3
Autobiographical accounts of cancer authored by humanities scholars blend experiential narrative with documentation, theoretically informed analysis, and cultural critique.Footnote 4 Autobiographical writing about cancer has proved particularly valuable for documenting distinct challenges and resiliencies faced by minoritized cancer patients for whom “the clinic” is rarely culturally attuned or neutral. For minoritized humanities scholars, cancer pathographies become critical sites of resistance, pedagogy, and public health activism.Footnote 5
This themed issue features autobiographical accounts authored by minoritized humanities scholars living and working with advanced cancer; pathographies that invite deeper exploration of critical epistemic counterpoints to dominant clinical paradigms, complicate biomedical discourses, and open space for reimagining how illness, identity, power, and care are conceptualized and practiced.
1. Pathography
Pathography—from the Greek patho (suffering, disease) and graphy (writing)—names a mode of writing that emerges from illness while also exceeding it. Cancer pathographies, in particular, constitute critical and potentially transformative engagements with disease that provide analytic and dialogic objects for the public humanities. Such autobiographical treatments are invariably concerned with living and dying, altered futurities, and the problem of how knowledge is produced under conditions of bodily, relational and prognostic precarity.Footnote 6 An advanced cancer diagnosis relocates everyday life into what Lochlann Jain describes as “living in prognosis”: a condition in which temporality itself becomes reorganized through uncertainty, surveillance, anticipation, and the continual recalibration of possibility.Footnote 7
Within what might reasonably be construed as catastrophic conditions for scholarly work, of what value are the familiar humanities methods of deep reading, documentation, critique, analysis, and pedagogy? Do these cartographic and pathographic methods have a particular function for minoritized scholars, who have honed over a lifetime critical toolkits aimed at rewriting the world and rethinking the unjust algorithms that define alterity? This themed issue begins from the premise that they do.
At the very moment when the health humanities might be said to have come of age, a significant number of minoritized scholars across this diverse field are simultaneously navigating advanced cancer diagnoses, recurrence, chronic surveillance, caregiving, and the enduring aftermath of treatments that permanently reconfigure life, labour, intimacy, and embodiment.Footnote 8 These experiences generate a distinctive epistemic space in which the boundaries between scholar and patient, theorist and survivor, clinician and subject become increasingly unstable. Here, the body functions not only as site of intervention, but also as archive, method, and analytic instrument.
In a brilliant dialogue between minoritized humanities scholars and cancer pathographers, Lochlann Jain and Jackie Stacey, on the complexities of “writing about illness,” Stacey incisively notes: “If the contours of this terrain were unexpected for both of us as we reluctantly travelled across them, then the kind of writing we produced in response seems to share an ambition to offer readers both critical purchase and affective connection.”Footnote 9 Knowledge emerges from minoritized scholars’ pathographic labour not despite illness, but through embodied and at times, unruly encounters with institutions that alternately refuse to see, care for, classify, choreograph, discipline, and silence.
For minoritized scholars, then, pathography is never simply the narration of private suffering. It is also a way of making visible the larger systems through which some bodies are rendered legible as fully grievable, treatable, knowledgeable, and deserving, while others are made precarious by design. The scholar-patient writes from within illness but also from within racialized, gendered, sexualized, disabled, colonial, and classed histories of differential exposure to risk, delayed care, diagnostic neglect, and foreshortened futurity. To read cancer pathography from the dirty margins is therefore to read individual illness narrative as an analytic aperture onto the unequal organization of cancer itself.
2. Cancer precarities: Necropolitics in full view
Across historical and contemporary global oncology data, systemic cancer inequities are evident across the full continuum of cancer screening, diagnosis, treatment, and survivorship. Minoritized groups face unequal access to screening, later-stage diagnosis, diminished access to standard-of-care treatment, degraded quality of care, and higher rates of morbidity and mortality.Footnote 10 Major differences in prevalence and outcomes persist even when adjusted for socioeconomic status. Among people who have never smoked, for example, Asian women are twice as likely as non-Hispanic White women to develop lung cancer.Footnote 11 In the United States, Black men experience the highest prostate cancer mortality rates across racial and ethnic groups; similarly, Black women are up to 40 percent more likely than white women to die from breast cancer. In the Global North, LGBTQ+ people are affected from multiple angles. National cancer registries do not collect data on sexual orientation and gender identity. LGBTQ+ people have a higher prevalence of various cancers and decreased access to care, which is exacerbated by care avoidance due to discrimination.Footnote 12 Any discussion of minoritization in cancer health outcomes must note the significant differences in cancer incidence, morbidity, and mortality for Indigenous people in North America and Oceania. The Centers for Disease Control reports that: “American Indian/Alaska Native (AIAN) people bear the highest overall cancer mortality of any group, with rates two to three times those in White people for kidney, liver, stomach, and cervical cancers.”Footnote 13 In Aotearoa-New Zealand, Māori community health data indicate substantially higher prevalence rates for many common cancers, alongside significantly higher mortality rates, when compared with New Zealanders of European descent.Footnote 14
Discrimination, state violences, and related institutional barriers drive patient outcomes for minoritized groups. Philosopher Achille Mbembe describes how a necropolitical calculus amounts to a politics of death, wherein state powers shape “the capacity to define who matters and who does not, who is disposable and who is not.”Footnote 15 Minoritized scholars (race, ethnicity, gender identity, sexual orientation, disability, or other intersecting structures of marginalization) frequently navigate scenarios where basic human rights are foreclosed, including epistemic exclusion—where our ways of knowing and being remain unrecognized in both academic and clinical settings. As scholars, we often inhabit what might be termed the “dirty margins” of institutional life, paying a high cost for affirming knowledge generated from cultural peripheries.
3. Cancer’s dirty margins
Within oncological discourse, clinicians routinely use the term “dirty margins” to describe the presence of residual malignant cells beyond the defined edge of surgical excision. Advanced cancers trouble the very fantasy of clean margins. Their biomedical and symbolic terrain is organized precisely around what cannot be fully contained, excised, or resolved. Patients living with advanced disease often find themselves symbolically displaced within dominant cancer cultures still structured around survivorship, cure, restoration, and return. In Purity and Danger, Mary Douglas famously defined dirt as “matter out of place.”Footnote 16
Minoritized scholars know this condition intimately. To inhabit the margins of race, gender, sexuality, disability, migration, class, or Indigeneity within institutional life is already to occupy spaces where one’s knowledge may be treated as excessive, inconvenient, overly affective, insufficiently objective, or improperly universal.Footnote 17 “Dirty margins,” in this sense, names not only an oncological residue, but also an epistemic, political, affective and institutional condition. If Mary Douglas understood dirt as “matter out of place,” Steven Epstein’s account of AIDS activism similarly demonstrates how embodied and activist knowledges “impurify” the institutional fantasy of detached scientific authority.Footnote 18 The figure of dirty margins therefore allows us to hold together what biomedical, academic, and cultural systems often work to keep apart: disease and interpretation, bodily vulnerability and analytic authority, marginality and knowledge production. It is from this unsettled space—where illness exceeds diagnosis and minoritized experience exceeds the categories made available to contain it—that pathography becomes a critical humanities method.
4. From dirty margins to pathographic method
This themed issue positions itself within those dirty margins and asks how illness might be narrated beyond the dominant languages of diagnosis, treatment, survivorship, and cure. The essays gathered here foreground forms of cancer experience that frequently remain illegible within biomedical discourse: racialized, queer, disabled, economically precarious, migrant, and otherwise marginalized encounters with advanced cancer that exceed the limits of neatly categorizable clinical narratives. Collectively, these contributions challenge the reduction of illness to treatment regimens and diagnostic abstractions. Through memoir, autoethnography, caregiving narratives, visual analysis, pedagogy, performance, and multimodal testimony, they insist upon the analytic significance of lived and embodied experience.
Such interventions emerge alongside the broader development of the medical and health humanities—fields that have persistently argued that illness cannot be understood solely through positivist or biomedical frameworks.Footnote 19 Rather than treating disease as a singular biological event, scholars in these fields emphasize narrative, interpretation, affect, embodiment, and the socio-political conditions through which illness is experienced and managed. As Rita Charon writes, “If sickness calls forth stories, then healing calls forth a benevolent willingness to be subject to them, subjects of them, and subjected to their transformative power.”Footnote 20 Narrative, visual, oral, and performative forms therefore become essential not simply as representations of illness, but as ethically complex modes of witnessing, theorizing, and reimagining care itself.Footnote 21
Many of the essays in this themed issue push further still, refusing the assumption that textual narrative alone can adequately contain the complexity of embodied experience. They attend to visual, oral, material, and performative practices through which cancer is lived and communicated. In doing so, they draw attention to the ways cancer is always mediated by broader structures of race, gender, sexuality, disability, migration, labour, and class, as well as by unequal access to care, uneven geographies of treatment, and historically sedimented forms of institutional violence.
5. Pathography and the ethics/politics of aesthetic acts
These alternate modes of testimony resonate strongly with Diana Taylor’s concept of the “repertoire”: embodied and performative forms of knowing and knowledge that exceed the limits of the archive.Footnote 22 Taylor reminds us that gestures, movement, orality, affect, and performance function as systems of knowledge objects, relationality, and resistance no less significant than written documentation. Such a distinction becomes especially important for cancer pathography. Pathography is not merely documentary. Nor is it reducible to stories, confession, or therapeutic disclosure. It operates as an aesthetic act, epistemic intervention, and embodied theory.
This distinction between pathography as aesthetic act and pathography as an archival document also illuminates the political significance of aesthetic practice itself. Specifically, Jacques Rancière’s formulation of aesthetic acts as constitutive of a political reorganization of “the distribution of the sensible” becomes particularly generative here. Aesthetic acts, he argues, create “configurations of experience that create new modes of sense perception.”Footnote 23 They reorganize what can be seen, heard, felt, and recognized as intelligible. The essays collected in this themed issue therefore ask what forms of life with advanced cancer become perceptible when interpretation moves outside the classificatory logic of institutional medicine and toward embodied, affective, and minoritized forms of knowing. They ask what biomedical discourse cannot adequately apprehend: the temporal disruptions of prognosis, the labour of waiting, the pedagogical force of survivorship, the politics of caregiving, the uneven distribution of hope, the erotic life of illness, and the epistemic labour patients themselves undertake as researchers, translators, archivists, activists, and teachers.
6. A constellation of themed issue avenues of inquiry
The articles gathered here demonstrate that pathography operates not merely as testimony or narrative representation but as method, aesthetic act, and epistemic intervention. Taken together, the contributions gathered here do not simply add marginalized experiences to existing cancer discourse. Rather, they challenge the epistemological terms through which cancer has conventionally been understood. They reveal the clinic to be not only a therapeutic space but also a site of governance, pedagogy, classification, affective management, and institutional choreography. The thematic constellations that follow trace how the contributors collectively rethink embodied knowledge, structural violence, aesthetics, care, temporality, queerness, race and ethnicity, Indigeneity, disability, and institutional power from within cancer’s dirty margins.
6.1. Embodied knowledge and insider–outsider tensions
Several essays in this issue foreground the scholar-patient as a figure through whom the relation between bodily vulnerability and epistemic authority becomes newly legible. In “Tactical Choreographies: Queer Pedagogies on Cancer’s Dirty Margins,” Mary Bryson argues that cancer clinics are always already pedagogical sites: spaces in which bodies are arranged, affects are disciplined, and knowledge is routed through institutional choreographies of legitimacy, silence, and responsiveness. Juxtaposing the 1959 television series Tactic with a contemporary patient-curated archive of fieldnotes, clinical reports, correspondence, and medical images, Bryson develops “tactical choreographies” as a concept for how patients inhabit, reroute, and sometimes refuse the pedagogical demands of medicine. Here pathography is neither confession nor supplement; it is epistemic intervention, a cartography of presence assembled from fragments, pauses, and refusals.
William Pinar’s “How Symptomology Substitutes for Subjectivity” offers a markedly different but related account of the insider–outsider tension. Writing as a lifelong scholar of currere and subjectivity, Pinar describes the shock of finding his reflective life increasingly displaced by the relentless management of symptoms during and after treatment for neck cancer. What remains of subjectivity when the body becomes an inventory of side effects? His essay does not reject biomedical care; rather, it identifies a quiet eclipse of the self through the clinical accounting of bodily events. If Bryson’s essay exposes the pedagogical apparatus of the clinic, Pinar’s asks what becomes of inwardness, desire, and self-narration when symptomology colonizes consciousness.
Bryant Lin’s “Narrative Review of a Medical School Course Designed to Engage Students with a First-Person Patient Perspective on Cancer” extends this problem into medical education. A physician diagnosed with stage IV epidermal growth factor receptor (EGFR) oncogenic-driven lung cancer—a genetic, never-smoker’s lung cancer—Lin designed and taught a Stanford medical school course organized around his own unfolding case. The article demonstrates how a physician-patient’s first-person pathography interrupts conventional hierarchies of medical knowledge and foregrounds the lived expertise of a minoritized cancer patient within biomedical training. In Lin’s hands, the classroom becomes a site where clinical narrative, patient narrative, Asian health, spirituality, caregiving, and mortality are brought into dialogue. The scholar-patient is not simply an object of care but a teacher of future clinicians.
6.2. Structural violence and cancer care
Cancer’s dirty margins are also the places where the structural violence of medicine, public policy, and institutional care becomes most visible. In Bryson’s account of advanced EGFR lung cancer within the Canadian public system, treatment pathways are shaped by triage logics, outdated classificatory binaries, technological absences, and provider hostility toward patient-produced knowledge. The movement from “curative” to “palliative” intent is not simply clinical; it is administrative, affective, and political. Patient-led epistemic labour, including online communities and research translation, becomes necessary to access options that the institution either obscures or resists.
Chris Walsh’s posthumously assembled, “Dirty Margins, Queer Vows: A Pathography of Cancer, Academia, and the Unfinished Work of Being” similarly insists that gratitude and critique must coexist. Walsh praises the skill and compassion of individual clinicians while exposing the structural silences of cure culture, especially around sexuality, ambiguous grief, and the lived realities of stage IV metastatic disease. His essay queers the binary of good versus bad care and asks what analytical work becomes possible when erotic life, advanced illness, and institutional marginality are foregrounded rather than bracketed. As he argues, embodied, erotic minoritized knowledges are central to reimagining illness, academic labour, leadership, and legacy.
William Pinar’s essay also belongs in this constellation of structural critique, especially in its attention to how a long-term interracial gay relationship is received in medical settings and how ageing, treatment, and institutional care can quietly reduce personhood to bodily events. Across these essays, the clinic is not merely a therapeutic setting. It is a site in which value is assigned, time is reorganized, and certain lives become narratable only in impoverished terms.
6.3. Aesthetics of the margins
This themed issue includes essays that attend not only to cancer as event and diagnosis, but also to the expressive forms through which illness becomes thinkable. In “Wit against Fear,” Isabel Durán places Susan Gubar’s Memoir of a Debulked Woman in dialogue with Margaret Edson’s play Wit. Durán explores how autobiography and drama articulate bodily vulnerability, medical authority, and the politics of care, differently. The comparison illuminates testimonial authority, theatrical immediacy, and the ways literary form itself can resist biomedical reductionism. Ovarian cancer, so often hidden and underdescribed in public discourse, appears here as a site where language, genre, and staging become crucial to making embodied knowledge available.
The aesthetic question appears differently in Carrasco’s “Dirty in Academia: Forty Years in a Misbehaving Body,” a lyrical autopathography of HIV, Kaposi’s sarcoma, anal dysplasia, academia, and erotic counter-practice. Carrasco assembles a counter-archive of resentment, erotic improvisation, and delayed care, tracing how a minoritized body is rendered hypervisible as a research object while remaining marginal as a knowledge producer. The manuscript’s distinctive power lies in its refusal of confessional closure and in its insistence that humour, disgust, pornography, public health, pharmacological society, and queer pedagogy all belong to the archive of survival. Here the dirty margins are not located in diseased cells but in the systems that metabolize marginalized bodies as spectacle, evidence, and compliance while refusing their authority as theory.
6.4. Care beyond the clinic
A number of essays remind us that cancer care exceeds the clinic and is sustained through kinship, community, spirituality, and solidarity. In Connor’s essay, “Te Whare Tapa Whā, a Holistic Indigenous Māori Model of Health and the Framing of an Ovarian Cancer Personal Narrative: Endurance, Resilience and Courage,” Te Whare Tapa Whā, a Māori model of health frames an ovarian cancer narrative. Cancer appears as an earthquake that shakes the foundations of the house of health; healing requires attention not simply to treatment but to prayer, whakapapa, land, whānau, and spiritual continuity. This essay powerfully provincializes biomedicine by demonstrating that cancer is not only experienced through diagnosis and intervention but through Indigenous models of relation, endurance, and rebuilding.
Lin’s contribution also belongs in this category, particularly for its attention to caregiving, spiritual care, and mental health, as well as the significance of making a public educational resource available on YouTube to patients, caregivers, and broader communities. So, too, does the essay by Aysha Femin and Shilpaa Anand, “Cancer and the Indian Academic Context” on women academics in India, which traces how the experiences of caregiving, absence, teaching, writing, fear of recurrence, and the labour of maintaining scholarly identity become inseparable from cancer experience. Their work is especially attentive to cancer as a structural and affective force within academic labour and to the circuits of support, interruption, and adjustment that exceed clinical narratives.
6.5. Queering cancer, cripping the clinic
One of the defining ambitions of this issue is to queer cancer and crip the clinic: to interrupt the normative choreographies through which survivorship is aligned with cure, optimism, productivity, and heteronormative futurity. Walsh’s essay does this explicitly, insisting that erotic life, ambiguous grief, and queer relationality must be recognized as central to late-stage cancer experience. Carrasco’s essay extends this refusal by exploring kink, chemsex, disgust, surveillance, and queer pedagogical practice as sites where governance can be rerouted and the moralization of illness unsettled. Bryson’s tactical choreographies similarly frame patient documentation, research, and refusal as patterned movements across institutional thresholds.
Pinar’s reflection on desire during treatment, including the eroticization of clinical encounters and the insistence that desire remained one of the only enlivening subjective elements of treatment, offers another form of queering the cancer archive. These essays do not add sexuality as a topic; they demonstrate that sexuality, disability, diagnosis, and institutional governance are always already entangled. To crip the clinic is also to challenge the cult of restoration, the assumption that the only desirable body is the cured body, the recovered body, and the body returned to productivity. Across this issue, the clinic is asked to tolerate ambiguity, to attend to erotic and affective life, and to reckon with non-linear, non-restorative forms of living.
6.6. Temporalities of illness and afterlife
Cancer’s dirty margins are also temporal margins. They are constituted by interrupted futures, recurrent scans, chronic side effects, unfinished projects, and the strange elongations and contractions of time that prognosis produces. Bryson’s archive of appointments, cancellations, surgery, liquid biopsy results, and tactical decision making maps a temporality that cannot be contained by the binary of cure and palliation. Pinar’s essay tracks the substitution of symptomology for subjectivity over the course of a year of treatment, while also acknowledging the ways aging had already begun that transformation. Walsh’s manuscript, made all the more searing by its posthumous coda, thinks explicitly about quality of life, legacy, and the unfinished work of being.
Even where essays do not explicitly theorize death, they are inhabited by altered relations to time: the time of waiting for diagnosis in Durán’s ovarian cancer essay, the recursive medicalization and recurrence fears described by Femin and Anand, the long shadow of HIV and precancer in Carrasco, the longitudinal teaching experiment in Lin, and the rebuilding of the house in Connor. Cancer pathography is, among other things, a theory of altered temporality.
7. Reading and writing cancer otherwise in humanities’ dirty margins
The articles in this themed issue do not speak in one voice. They are polyphonic and heterogeneous in disciplinary formation, cultural location, and stylistic practice. They move through autobiography, memoir, drama, theory, pedagogy, Indigenous modes of knowing and healing, posthumous assembly, comparative reading, and narrative review. What they share is a refusal to separate lived experience from analytical force. Together they ask what happens when cancer is understood not solely as a disease but as pedagogy, governance, labour, archive, and world-making problem.
They chart embodied knowledge and insider–outsider tensions, structural violence and cancer care, aesthetics of the margins, care beyond the clinic, queering cancer and cripping the clinic, and temporalities of illness and afterlife. They show how cancer narratives authored by minoritized scholars expose the insufficiency of the cure culture, the narrowness of biomedical authority, and the epistemic violence of treating patient knowledge as anecdotal rather than constitutive.
This themed issue, then, is not simply about cancer. It is about what cancer makes newly visible: the social organization of suffering, the institutional management of ambiguity, the pedagogical force of documentation, the political significance of pleasure, the labour of care, and the work of surviving without a guaranteed future. These authors write from within disease but also beyond it, towards forms of solidarity, pedagogy, and critique that enlarge what the public humanities can be.
To write from cancer’s dirty margins is not merely to describe illness. It is to alter the conditions under which illness is understood. It is to insist that those who have been rendered out of place are often the ones most capable of perceiving the terms by which place itself is organized. These essays do not seek purification. They remain with contradiction, contingency, and incompletion. They teach us how to read cancer otherwise. They ask us to listen differently. And they insist that the margins are not where meaning fails but where it falters, is translated, rejected, and begins anew.
Author contribution
Conceptualization: M.K.B., B.L.; Writing - review & editing: M.K.B., B.L., A.R., L.E.; Project administration: M.K.B.
Open access
