Photo credit: Lyndsey Beutin

Toward Sick Futurity: Ill wisdom for liberation


In the early days of the COVID-19 pandemic, North Americans became familiar with the idea that people with underlying conditions were at increased risk for severe COVID infections. Talk of underlying conditions was a constant refrain across news media, public health missives, and social media posts. “Underlying conditions” became an awareness campaign, it became a rhetorical tool, and it became a shield that helped otherwise “healthy” people feel safer from a mysterious virus. Diabetics, in particular, were commonly invoked as a group who needed protection and the public was implored to act responsibly for their sake.

This media discourse became a constant source of enraged discussion in our home. As a medical anthropologist (Cal Biruk, CB) and a race and media scholar living with type 1 diabetes (Lyndsey Beutin, LB), we decided to channel our anger and insights into a multi-pronged project we call Sick Futurity, which aims to respond to able-bodied panics about becoming sick in the future by sharing the wisdom of people who have learned, through sick life, how to envision a future of wellbeing for all.

Blame, Shame, Care, and Responsibility

The frame of underlying conditions emerged from the entangled discourses of blame, shame, care, and responsibility that structure diabetic life. Diabetics are often blamed for causing their own illness or held responsible for failing to prevent its complications. We are incessantly shamed in public by health messaging that claims to care about us and by unsolicited comments from strangers who profer advice or are curious about our technologies. Yet, we continuously care for ourselves by navigating a complex set of disease management technologies, calculations, and decisions, often with limited support from institutions, insurance companies, and the general public. Within the first month of complete stay-at-home orders in Canada, LB attended an online program about medicinal herbal supports for chronic illness and COVID concerns. The facilitators were trying to calm sick people’s worry and panic. (The work of living with diabetes and managing its many components is called “diabetes distress,” which itself causes blood sugars to rise). They reported that if a person’s A1C test – a three-month average of blood sugar readings – was “good” and that if her diabetes was “in control,” then the constant stream of scary public health messaging about diabetics’ high risk of death from COVID did not apply. Type 1s were not, it seemed, the people to whom the public messaging was directed. Instead, it was type 2 diabetics—figures systematically constructed in media and healthcare discourse as overweight, uncontrolled and uncontrollable—who needed to worry.

Left unnamed were the ways the figures of type 1s and 2s are mobilized against each other. The juxtaposition of the responsible type 1 (imagined as young and white) with the undisciplined type 2 (imagined as older and Black, Indigenous, or Latinx) is based in longstanding racial logics of liberal humanism. The figure of the type 1 is the quintessential white liberal subject who, otherwise constructed as productive, innocent, and compliant, just needs a technological fix (like an insulin pump) to get her body back to normal. Type 2s, on the other hand, are figured as societal burdens who are putting themselves and their children at risk through their lifestyle choices, cultural habits, and general pathology. These are familiar racial types that are employed in binary opposition to obscure structural oppression, including the societal – not biological – origins of health disparities. Individualized regimes of blame and shame operate to anticipate futures in which those who do not live up to health care discourses of responsibility, autonomy, and self-control become legitimately disposable—and only have themselves to blame for it (Beutin 2023).

Being framed as in dire need of protection from the very same people and institutions that regularly disregard the needs of people who are chronically ill was infuriating. The figuring of people with chronic health conditions in North America as unable to care for themselves, as pitiable, and as closer to death did serious injustice to the ways that sick people have learned to survive and thrive despite the lack of formal, state, or other supports. Such framings of healthy people as potential saviors of sick people, for instance, seem absurd when read alongside the stockpile of supplies in our basement that LB has saved in case she ever loses access to health care. This has been an especially important reassurance during bouts of precarious employment, every time she changes jobs, or moves across a border, but it also relates to manifesting a more just world. Fighting for social and political revolution and the end of capitalism will have urgent effects on sick people’s immediate survival. So, month by month, LB stores up her few extra supplies so that she and others who may need them will be able to “last as long in the revolution as possible” in her words (see also Moore 2021). We have lugged these supplies with us between Philadelphia, Virginia, Ohio, and Ontario, and back across the Canada-US border to New Jersey. Casting sick people as the moral responsibility of others dismisses hard won collective knowledge, interdependence, solidarity, and strategies for surviving at the end of the world that sick and disabled people have forged. The supplies in our basement stand in as one seemingly small material manifestation of a future that is known by sick people to be contingent and uncertain yet possible through mutual aid.

Boxes of supplies. Photo credit: Lyndsey Beutin
Photo credit: Lyndsey Beutin

Sick futures for everybody’s freedom

After many COVID nights spent cooking together and trading insights about pandemic discourses and the lived reality of chronic illness, we applied for a grant program that was interested in funding projects about wellbeing, the pandemic, and Canada’s “bright future.” The core interests of our project, which proposed arts-based research methods that LB has been eager to try out, were focused on the rise of surveillance as care, the datafication of health and illness, inequities built into “cutting edge” diabetes technologies, data systems and public health insurance. It also took interest in how Canadians living with chronic illness engage and resist media and public health frames of victimization and heroic ableism. We didn’t get the grant, but we started the project. The notable thing about the grant rejection, though, was one line of feedback we received: “Important, but not crucial, to Canada’s future.” On the heels of relentless pandemic messaging that positioned diabetics as the reason to care about and follow public health protocols responsibly, suddenly, diabetics weren’t that important after all. This crystallized our point and reiterates the question: Whose futures matter?

The question of the future animates diabetic life. Diabetics manage the disease by checking blood sugars multiple times per day, and in the case of type 1s, calculating food to insulin ratios, programming insulin pumps, and calibrating continuous glucose monitors. Maintaining blood sugars in range consumes most of diabetic daily life and is done in pursuit of staving off “bad futures,” like vision and mobility changes due to health complications from the disease. Diabetic wearable technologies – often awkward, cumbersome, painful, disruptive, and time consuming (Berk 2018 and Forlano 2017) – are marketed as making diabetic life better, and importantly, better in the future by lowering average daily glucose numbers and thereby decreasing one’s risk of unpleasant diabetic complications. Living life chronically ill and the labor involved in doing so, though, makes you acutely aware that there is no time for a good life but the present. Knowing from a young age that all futures are indeterminate brings clarity: there’s no value in delaying fun and there’s no legitimacy to structures of abandonment and banishment. It has made many anticapitalist, anticolonial, and abolitionist solidarities possible, all forged in the name of living and imagining other kinds of presents and futures.

Meanwhile, in the early days of the COVID pandemic, the assumptions about the future that non-sick people harbor became clear. All of a sudden, millions of people realized that their futures were not guaranteed. In the panic that ensued, people tried to stave off their own newly considered unpleasant futures (of COVID infection and possible severe illness) by, among other things, hoarding alcohol swabs to religiously wipe off their phones and groceries. Alcohol swabs are also a mundane but crucial diabetic supply that prevents infection at injection sites. Depending on which technologies a type 1 uses and wears, she may need 2-8 swabs on any given day, but they were completely out of stock for months in Canada. Even pharmacists were not willing to hold back the stock for diabetics when we inquired if this was possible. We eventually turned to neighborhood group chats and found other diabetics able to source and share them. The pandemic alcohol wipe shortage illustrates LB’s recurring rant: “Don’t invoke us and then make our lives harder!” Non-sick people’s fears – the same people who were discursively constructed as needing to mask up to save sick people from themselves – jeopardized our wellbeing. It showed that, despite the public discourse about protecting others, non-sick people were primarily invested in protecting themselves. They fended off deep anxieties about becoming part of the much-maligned group known as “sick people” by containerizing their lives and bodies (Biruk 2022), instead of listening to sick and disabled wisdom about how to live fully and fabulously amid societal disregard (Wong 2022).

Photo credit: Lyndsey Beutin
Photo credit: Lyndsey Beutin

This is where the project of Sick Futurity comes in: we want to propose a radical reconfiguration of what we understand as health and living a good life by thinking with a living archive of the knowledge and practices of type 1 cyborgs who have, for generations, not taken the future for granted. Type 1 diabetics are an intensively surveilled category of people, hooked into vast data systems and technological infrastructures in the name of their health and preventing complicated futures. This surveillance, framed as benevolent and rendered as a form of care, is anchored in the idea that technology brings health, and it seeks to produce responsibilized subjects invested in their own productivity. Importantly, a responsible sick citizen’s duties extend to upholding the body politic: its nationalist narratives of progress, innovation, and hard work; its naturalization of good and bad people or deserving and undeserving immigrants; its capitalist interests; and its heteronormative investment in producing and protecting healthy and able children as the only horizon of futurity (Edelman 2004). Diabetic technologies and the stream of numbers they produce become the definitive marker of how well a diabetic is taking care of herself. Yet, we suggest it is crucial in this moment to shift away from the numbers, data, and technologies that become authoritative indicators of health and toward the tinkerings, imaginings, relations, solidarities, and creative ways of living-in-the-world that have helped generations of diabetics survive.[1] The sense of ‘living with’ (Wahlberg et al 2021)—rather than curing, eradicating, or escaping—is what we need now.

How we imagine the future affects the research questions we ask and the kinds of knowledge that come to count (or not). The idea of a nation’s bright future, for instance, conjures progress, innovation, forward momentum, scientific discovery, and improvement. These values are broadcast in state rhetoric and policy discourse, and are also enshrined in the increasingly neoliberal university. But these visions are not ground-breaking; rather, they were and are part of settler colonialism and capitalist development that has dispossessed, punished, excluded, and shamed generations of sick, disabled, queer, Black, Indigenous, and racialized people. This is not the future we are striving for.

We see Sick Futurity as a contribution to calls to expand our imaginations of what our collective futures could look like (see, for example, Piepzna-Samarasinha 2022 and Hayes and Kaba 2023). Building on disabled wisdom that situates interdependence as strength (Berne 2015, Wong 2022), sick futurity relies on “radical interdependence” in contradistinction to individualist and healthist orientations to the future. Radical interdependence shifts away from paternalistic notions of agentless sick people needing help from fully autonomous others, while centering a vision of the world that knows “we all need help sometimes and we all need dignity all the time” (Beutin et al 2021: 19). We must “truly believe and practice that we’re in this together” (Wong 2022: 337, emphasis original). Radical interdependence as a way of being in the world counteracts the violence of the invention of the liberal subject that keeps us isolated, alienated, and in perpetual scarcity and race war. For type 1s, radical interdependence comes from the practical: we often need help affixing our devices to our bodies and we sometimes need someone who is not afraid to stab us with a glucagon needle. As a mode of knowledge production and praxis, meanwhile, radical interdependence celebrates the overlap between living and thinking, between the practical and the theoretical, between ethnography and life. It means loving through, rather than curing or shifting away from, the complexities and tensions in any relation (Clare 2017). It means recognizing the ways that our bodies, our health, and our struggles and triumphs are not our own; they are all caught up in “painful and contradictory matrixes of support and negation” (Murphy 2017: 3). Radical interdependence is reciprocity, mutuality in life and work, and a way of capacitating each other’s worlds and imaginations, all of which are anchored in shared vulnerability and mobilized toward collective liberation. Radical interdependence means we need each other and that includes you.

Join us! Participate in our collective photo elicitation exercise by telling us what sick futurities look like to you. Send a digital image and commentary to sickfuturity@gmail.com or @sickfuturity on Instagram. Learn more about Sick Futurity in our zine, available at linktr.ee/sickfuturity. If you are interested in joining an art and zine-making collective focused on living with and loving with diabetes, give us a shout.


[1] We appreciate artist and researcher Sam Thulin’s (2021:169) fashioning of his own diabetic data into artworks that “detach themselves as much as possible from goal-orientation, following instead other possible trajectories of data and bodies.”

References

Berk, Elizabeth. 2018. “A kind of disassembled and reassembled, postmodern collective and personal self: Agency and the insulin pump.” Journal of Material Culture 23(4):448-458.

Berne, Patty. 2015. “Disability Justice – a working draft by Patty Berne.” Sins Valid blog, June 10, 2015, https://www.sinsinvalid.org/blog/disability-justice-a-working-draft-by-patty-berne

Beutin, Lyndsey. 2023. “Surveillance for care and the white liberal subject.” Conference presentation, American Ethnological Society, March 24, 2023, Princeton, NJ.

Beutin, Lyndsey, Cherry Henley, B. Esi Okesanya, and Sally Williamson. 2021. The Radical Yes: A Constellation of Mutual Aid Projects in Charlottesville. Southern Cultures 27(3): 18-30.

Biruk, Cal. 2022. ‘COVID containers’ in pandemic mediascapes: discursive economies of health, bodies, and race in North America. Anthropology and Medicine. 29(3): 305-322.

Clare, Eli. 2017. Brilliant Imperfection: Grappling with Cure. Durham, NC: Duke University Press.

Edelman, Lee. 2004. No Future: Queer Theory and the Death Drive. Durham, NC: Duke University Press.

Forlano, Laura. 2017. “Data rituals in intimate infrastructures: Crip time and the disabled cyborg body as an epistemic site of feminist science.” Catalyst: Feminism, Theory, Technoscience 3(2):1-28.

Hayes, Kelly and Mariame Kaba. 2023. Let This Radicalize You: Organizing and the Revolution of Reciporical Care. Chicago: Haymarket Books.

Moore, Erin V. 2021. “On borrowed time: Living with chronic terror in the United States’ insulin crisis.” Retrieved May 22, 2023 from Somatosphere web site: http://somatosphere.net/2021/borrowed-time-diabetes-moore.html/

Murphy, Michelle. 2017. “What can’t a body do?” Catalyst 3(1):1-15.

Piepzna-Samarasinha, Leah Lakshmi. 2022. The Future is Disabled: Prophecies, Love Notes, and Mourning Songs. Vancouver: Arsenal Pulp Press.

Thulin, Samuel. 2021. “Diabetes, art, and data resonance.” Canadian Journal of Disability Studies 10(2):154-177.

Wahlberg, Ayo, Jieun Lee, Anna Mann, Arseli Dokumaci, Natasja Kingod, Marie Kofod Svensson and Laura Louisde Heinsen. 2021. “Chronic living: ethnographic explorations of daily lives swayed by (multiple) medical conditions.” Retrieved May 22, 2023 from Somatosphere web site: http://somatosphere.com/2021/chronic-living.html/

Wong, Alice. 2022. Year of the Tiger: An Activist’s Life. New York: Vintage Books.

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