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Dis—ease with X and Y: Disclosing Digital Sociology

Amanda Windle

17 July, 2017

When Noortje and I met to discuss my contribution to the book panel of her latest book, Digital Sociology, we talked about how I might extend her book’s chapter on practice. Anyone who has read Marres’s work on controversy and publics will appreciate her clear captions and use of data visualisations. However, I chose to tell another story, one about book launches, and as Noortje said afterwards— it’s about disclosure.

Noortje draws arguments about social media from George Simmel’s notion of “‘triadic closure’ where if one person knows two people they are likely to know each other” (2017, 63). There were a few triadic closures in this book because books gather friends, colleagues, workers, lovers and dust. Inspired by Helen Verran’s recent 'Silenced Issues', I approached this review as autobiographic, so as to raise issues about health and wellbeing, while interweaving the digital.

A while ago, I was not a panelist of a book launch but a member of its audience, listening eagerly about Michael Guggenheim’s book and intently focused on Noortje’s comments to Michael. “Books are thick letters to friends” wrote Jean-Paul Sartre, echoed by Michael which he said just before receiving the panelists’ comments. Noortje was a panelist that night and emphasized that when in the company of academics, we should debate, we should be critical. And I agree, but it’s sooooo difficult to practice.

It was a cheery summer’s evening amongst academic companions, but that night, beer in hand, I talked to an artist (called X) and I learned that a mutual friend of ours was very ill. The friend, whom I will call Y, and I share the same health condition, inflammatory bowel disease. The first time I met Y, X was preparing dinner for us. Y and I sat alone, and for a time, just looked at each other. We didn’t speak much, but looked at each other in the way that ill people do. We eventually talked about our health as was the aim of the intervention. And we shared a key digit, our dates of diagnosis, but not looming digits, like the “loss of weight over time” to cite a graphic from Marres’ book. ‘Fat is a feminist issue’, Marres and Lury recount parodying Susie Orbach, but fat is a big issue for those with Ulcerative Colitis or Crohn's disease (Orbach, 1978). Had I been in the seminar Marres talks about in her book, I’d have raised a point about disability and digital ability. I’d have expanded to say, it’s deeply personal and difficult to open up in a first time, face-to-face conversation about illness, and so much easier in a digital group or blog post.

That night, Y and I discussed the leading research advancements in pharmaceuticals and surgery as researchers would, and not about pain or depression. We never talked about our eating and bathroom habits, nor our preference for pain medication or addictions that may occur. He was a notable post-doctoral researcher at that time, reading digital microscopic imagery to advance his work on mycobacterium tuberculosis.

Y and I did share some, but not all, of the invasive and often digitized medical experiences. Regardless of the UK’s free healthcare and statutory sick pay, we’d both be back at work the very next day after having had our insides pulled and stretched. We’d get back on the tube banged around on busy carriages by people caring more for the space to read their data publically on “glass” surfaces than for generic personal bodily space (Kember, 2016). To use Noortje’s phrase “device-aware sociology”, for their sake: don’t bang into people with your data, because it hurts deeply.

Two years later from meeting Y, I went into remission and have been for over a decade now. Y however passed away between the two book launches. It is the growing gap between these two printed books and between health and care that mattered deeply, whether it’s through the arts or sociology.

‘Who are digital sociology’s publics?’ Noortje asks in chapter five, when “examining ways in which research subjects may be involved as research participants” (170). As a passive digital audience member I benefited prior to social media, from early online forum groups. However, the move to larger corporate social media groups did disrupt some of these grassroots support networks specifically when their digital infrastructures shifted during the noughties. Someone with UC-CD doesn’t always need their mood creepily enhanced by an algorithm on Facebook, but may appreciate some of the roaming mental health bots on Twitter. This digital shift was, and still perhaps is, a substantially understudied area of digital sociology at the intersections of digital innovation and participatory action.

When Noortje suggests “the outing of digital technology as a notable dimension of social research” the trope of the “outing” of someone or something needs further work (42). It felt like a queer-feminist argument might emerge from Donna Haraway’s inclusion but this is where I hope the readers of this book will extend with inventiveness (to parody Celia Lury and Nina Wakeford) this aspect of Marres’ digital sociology.

In summary, my points about participation lagged behind my points about illness which sped-up and got ahead. But then love fell behind, pain happened and death came right up. As an active reader I urge you not to “out” X and Y with your digital devices but rather to fill in other gaps that Noortje’s book opens up. Please attend to other silences in our academic sharedness.

Books and their launches pull together people like myself who are— white but not that white, straight but not that straight, ill but not that ill, but who are already seen as waaaay tooooo much. Think about the stigma that is carried in the body, the moment an author talks about how their academic sharedness, how our body participates both in front and behind a books’ paper-digital materiality. Let’s not silence the body in our shared digital research.


Orbach, Susie. ([2006] 1978). Fat is a Feminist Issue. London: Random House Arrow Books
Kember, Sarah. (2017). iMedia: The Gendering of Objects, Environments and Smart Materials. London Palgrave MacMillan

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