Connect1d is a Canadian organization that was founded to involve the experiences of type 1 diabetics in research about type 1 diabetes. Its website states, “Many of us have lived experience with T1D, and we want to work closely with the diabetes community to co-create what the future of living with T1D looks like” (accessed Sept 15, 2025). It sounds good, so then, what is wrong with this image (see below)?
In order to register to use the site, participate in studies, and post information about studies, visitors must select between two binary options: living with T1D or researcher of T1D. What about those of us who are both living with and researching T1D? It seems like an obvious oversight, especially considering the fierce and lively crew of researchers of T1D whose research and art comes from living with, and tinkering with, our data and devices (e.g., Thulin 2021; Forlano 2017). Yet, this binary opposition speaks to lingering assumptions about patients, researchers, and expertise within both medical and scholarly communities.
Connect1d asks visitors from its website to identify as either a “person living with T1D” or a “researcher.” Screenshot by authors.
The assumption that patients are useful for weighing in on issues but are not primary architects and experts of T1D design and research persists even amid immense interest in understanding lived experience as expertise. As Samantha Gottlieb (2019) has documented, the FDA has sought patient involvement in medical device development, yet puts limits on the nature of participation and agency. In particular, medical device companies punish Type 1s who hack their pumps in order to reclaim control over their own data. Despite being an example of sophisticated patient involvement, this is not the type of engagement that the companies and government seek. Companies and governments use discourses of empowerment and patient-centred research to cover over their strong interest in patient compliance.
In our own research collaboration, Sick Futurity, which uses creative methods to document the life stories of diabetic entanglements with technologies and data, Lyndsey, who has type 1 diabetes, often feels relegated to the “patient slot,” regarded as the expert on her lived experience but not the academic authority in the room. Meanwhile, Cal, who is trained in medical anthropology and does not have diabetes, is seen as the legitimate researcher whose expertise can weave together a directly-affected interlocutor’s experiences with theoretical innovations in the anthropological literature. It might not seem problematic on its face, but Lyndsey was also trained as an ethnographer and media studies scholar of race and technology. In fact, our research project emerges from Lyndsey’s work in surveillance studies to theorize the limitations of the discourse of “surveillance for care,” a discourse which suggests that surveillance is good (and can escape criticism) when it is used for health or care.
Recruitment materials for the authors’ research collaboration, Sick Futurity. Image by authors.
In what follows, we draw on our relationship as research collaborators who are also lovers to illuminate how moments of tension and asymmetry have been integral to the insights about living with diabetes (whether as a diabetic or someone who loves a diabetic) that animate our research project.[1] Not unlike medical technologies (such as insulin pumps), our collaboration experiences glitches. Scholarly discussions of collaboration identify the difficulties it poses to the smooth unfolding of projects: its potential to lengthen project timelines, the struggle to communicate across disciplinary divides, or hierarchies between a community and an academic research team or within partnerships across the global North and South (Mason 2020; Lewis 2023; Biruk 2023). Yet, such challenges have rarely been considered as productive for generating knowledge central to projects themselves.[2] Rather than smoothing over tensions, we adopt a queer openness to how “rough” moments of frustration or strain–which become especially apparent between intimate collaborators–are key sites of knowledge production. As such, we attend to the “discomfort, unease, and trouble” in feminist collaborations that themselves are always entangled in hegemonic structures (Murphy 2015, 721). Our research on a medical condition that only one of us has but both of us live with is an apt site for considering questions of expertise, allocation of credit, and the complexities of embodied knowledge in collaborative anthropological research.
The ‘Patient-Expert’
Diabetes is a fitting condition for illuminating the entanglements, infrastructures, and labor through which collaborative knowledge is produced. Indeed, diabetics are necessarily entangled in infrastructures well beyond the confines of their individual bodies (Horrocks 2019, 2). Lyndsey is connected to multiple medical devices (insulin pump, continuous glucose monitor [CGM]) at any one time, and these devices link her into a vast cloud of data accessible to her care providers and medical device companies. On a recent roundtable we both participated in about the continued affordances of the cyborg concept in anthropology, Lyndsey pointed out that she was an actual cyborg, lending a materiality to our conversations, which had, up to then, been in the realm of the metaphorical.
As we carried on our lively conversation, amid the politics and dynamics of present-day preoccupations with assigning expertise to those living with a condition (or possessing an identity, more broadly), Lyndsey could not help but feel that she was being seen as ‘the patient’ in the room. Although she is (rightfully) granted an immediate expertise on diabetes by virtue of being diabetic – an experience that has been both empowering and revealing of the concept’s limits – Lyndsey’s academic research on race, technology, and white supremacy from which the project is generated is often seen as extraneous to her diabetic identity. Several invitations to speak on our project have gone to Cal only; often post-presentation questions about the anthropological contributions of the project also go only to Cal. What does it mean to fetishize lived experience or embodied knowledge (as a field and across academic disciplines) only to instrumentalize and contain the vision that living with diabetes (and other marginalizations) creates for re-imagining how health, care, racial justice or equity might work? Our project thus seeks to fundamentally rethink the figure of the ‘patient-expert’ by foregrounding how diabetic knowledge is relevant to us all.
Metrics and Credit
In preparation for a different conference submission, Cal aimed to connect Sick Futurity to the conference’s larger theme–employing medical anthropology and STS concepts like entanglement, infrastructures of care and neglect, and chronic landscapes. As Cal crafted the abstract that Lyndsey was supposed to be helping with, they heard Lyndsey intermittently shouting and sobbing over a series of phone calls with medical device companies and private insurance companies. A CGM had just failed; last month’s sensor reimbursement claim had been incorrectly denied; pump data was not uploading correctly to a website because of a browser error. These frustrations with corporations and tech malfunctions are part of the diabetic work that the research project’s questions emerge from. Lyndsey was on the phone for far longer than it took Cal to write the abstract. For Lyndsey, this was just everyday life, but it spoke to another emerging frustration in the research collaboration: What percent of the work did Lyndsey do on the abstract? Was it 0%? Cal wrote 100% of the abstract; Lyndsey lives 100% of the time as diabetic.[3] Being queers who ascribe to a politics of radical interdependence and mutual aid, we don’t care much about calculating percent contributions. But our university does, and it uses such calculations to help determine our wages and raises, which in turn helps offset the cost of Lyndsey’s medical devices.
Lyndsey, insulin pump, and Cal collaborating on a conference abstract during a recent writing retreat. Image by authors.
This moment speaks to the absurdity of narrow and inflexible models of counting and measuring productivity or merit that undergird the neoliberal university and its cultures of audit and enumeration (Strathern 2000). Even as Lyndsey’s condition–and body–are the focus of our scholarly inquiries in this project, her body’s enmeshment in, in fact reliance on, larger entanglements of insurance bureaucracy and profit-driven medical device companies means that she spends hours each week engaged in diabetes work (see Arduser 2017; Edmiston 2025, 8) that doesn’t ‘count’ according to the university’s tally sheets, even as diabetes is one major prong of her current research agenda.
Counting, of course, is central to living by the numbers with diabetes: diabetics count carbs to calculate insulin dosage, count the percentage of time “in range” of appropriate blood sugar levels, to name just two forms of diabetes accounting. Even as a major concern of Sick Futurity is to capture the inadequacies of numbers as the primary, even sole, metric for diabetic health (Hatch 2019; Hunt et al 2019), and to foreground other ways of conceiving or radically reimagining health (Minich 2023), we are unable to escape imperatives of datafication that dominate academic spaces. Such imperatives aim to artificially smooth out the actual fraught dynamics, tensions, and glitches that generate knowledge through collaboration. To challenge institutional logics, the project takes inspiration from queer studies’ contention that queer practices, social relations, and modes of accounting and being accountable defy the “rigors and lure of mensuration” and reveal the aporias of the “seemingly logical or rational impulse to assess, to audit, or to evaluate” (Manalansan 2018, 496). This orientation to datafication and counting–informed by the fact that diabetes is another partner in our relationship–infuses our collaboration, which seeks to produce queer and messy, rather than tidy and smooth, data.
Embodied Knowledge
For decades, medical anthropologists have celebrated embodied knowledge, or knowledge produced in and through the body’s direct engagement with the world. In grants and publications, we too, use the term embodied knowledge to speak to ways of knowing and making knowledge that emerge from living with a chronic illness. Such ways of knowing are more important than ever in clinical spaces increasingly dominated by tools and technology complicit in the datafication (even AI-fication) of bodies and care (Ruckenstein and Schüll 2017; Kenner 2018; Grosen and Hansen 2021). Embodied knowledge brings to the fore materialities, feelings, and critiques that challenge dominant techno-triumphalist narratives of data and technology as tools that can care for bodies and illnesses. Yet, our collaboration has helped us realize that embodied knowledge struggles to escape the “patient slot” even as it is celebrated and revered by medical anthropologists. The patient (or sick) status of a patient-scholar seems to overshadow the latter portion of their conjoined identity, when in fact all patients are researching, hacking, and theorizing the matrices through which they navigate sick life.
Living with diabetes in intimate collaboration reminds us that embodied knowledge often comes from the things that go wrong. This could mean Lyndsey’s pump shrieking a high-pitched alarm because it lost the signal of the CGM during her lecture due to signal interference from the 200 student phones in the auditorium. The alarm can’t be ignored. Though it interrupts the professor’s train of thought regarding the printing press’s relationship to the transatlantic slave trade, it nevertheless creates a teachable moment about technology and surveillance.
When things glitch they draw our attention to assumptions built into infrastructures, disciplines, and ways of thinking (Sundén 2015; Pink et al 2018). The tensions that have arisen in our Sick Futurity collaboration regarding expertise, credit, and the logics of counting drive home this point and have helped us to sit with, think with, and appreciate the rough edges of collaboration rather than attempt to smooth them over. While STS scholars often highlight the critical potential of glitches or failures of technologies (which inspires our own stance toward diabetic technologies), we might also consider the ‘collaboration’—a key infrastructural component of knowledge production—as a technology, rife with glitches, itself.
Notes
[1] Such moments of tension are caught up in our intimate relationship and are not confined to our research collaboration. For instance, Lyndsey’s old CGM device was so unwieldy and cumbersome that she needed Cal’s help to affix it to her arm about every week (the lifespan of a sensor). This meant that Lyndsey would sometimes go for days without a sensor because the ritual required her to ask Cal for help or because it didn’t easily fit into the rhythms of a day. On some nights Lyndsey gets little to no sleep because she experiences middle-of-the- night diabetic lows (affecting her ability to perform her research and teaching obligations the next day); Cal slumbers peacefully through these.
[2] As one exception, Bhojvaid and Capelán (2025, 353), explore contamination as both an interpretive tool for understanding atmospheric dimensions of their different field sites (pollution in Delhi and wind in Patagonia, respectively) and as a key metaphor for their thinking and writing together as anthropologists. They reflect on “the value of not obscuring differences” between their field sites, writing styles, and analytic sensibilities, illuminating the productive role of incommensurability in collaborations.
[3] In fact, Lyndsey contributed quite a bit to writing the abstract through conceptualization and revision, but this example demonstrates that what counts is always based on limited and limiting criteria (just like metrics themselves); abstracts and the presentations that result from them are a legible, quantifiable output in academic milieux. The compulsion to add this footnote also shows the cycle of valorization, reduction/containment, and stigma that characterizes lived experience as expertise.
This post was curated by Contributing Editor Paige Edmiston.
References
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