Whose Diabetes Is It Anyway?

Shortly after my daughter’s Type 1 diabetes diagnosis, I attended a meeting with her preschool teacher, the school’s director, and a certified diabetes educator (CDE) to create a plan for her diabetes care at school. For the most part, the meeting was uneventful. The CDE did the talking, explaining the symptoms of high and low blood sugar and demonstrating how to manually check blood glucose, administer an insulin shot, and perform other management tasks. But there was one matter about which the school’s director had a firm opinion: none of these tasks were to be performed in the classroom. It just wasn’t appropriate for five-year-olds to see blood and sharp objects, she explained.

Well, the CDE did not accept this. She protested that diabetes was a biological fact and that it was nothing about which to be ashamed. My daughter’s condition should be visible, she said. For her sake and her peers’. Shouldn’t kids learn to show compassion for individuals with physical differences? Besides, she added, bathrooms are really unsanitary; performing diabetes tasks in these spaces significantly increases the risk of infection.

The two bickered about the matter. I remember thinking, “Does anyone care what I think? Or better yet, what my daughter might think?” Even at five years old, she wanted to be in control of her body. This desire became even more pronounced when a new set of regimens was suddenly imposed upon her.

The incident has stayed with me, perhaps because it so clearly demonstrates some of the ways in which diabetic bodies are subjected to surveillance. Unlike many other chronic conditions, diabetes involves visible self-management practices, which inevitably prompt comments that range from insensitive to downright outrageous. For instance, “Gross! I can’t stand the sight of blood” or “Why are you shooting up here at the table?” To avoid such scrutiny, many individuals retreat to private spaces (often, filthy bathrooms). Others try to be discreet; for instance, they swiftly inject insulin when no one around the conference table seems to be looking.

This was the subject of a recent study in the UK conducted by University of Edinburgh Research Fellow Mark Lucherni. Lucherni, who has Type 1 diabetes, interviewed others with the condition about their public management routines to determine the ways in which individuals “perform” diabetes regimens (obey society’s demands for keeping leaking bodies out of sight). He also considered the subtle ways in which a few individuals rebel against these norms. His discussion of the latter is especially compelling.

Lucherni describes small moments of resistance such as individuals’ cynical responses to public comments (“Look away, I’m shooting up now!” or “Better watch out so you don’t catch diabetes!”). He also analyzes passive aggressive behaviors, such as one participant’s habit of clicking an insulin pen under the table and pushing the beep of his glucose meter while his peers scratched their heads looking for the source of the sound. These snarky behaviors are symbolically significant, Lucherni contends. They help to “loosen the grip” of the norms demanding that public bodies always be clean and sealed.

His analysis is fascinating and well worth a read for anyone interested in the “biopolitics” of diabetes. But it takes for granted that invisibility is and always will be the norm. Sometimes, as my example above suggests, it is visibility that is demanded of individuals with diabetes.

Let’s return to that CDE for a moment. I know that she was well meaning, and I largely agree with her about the benefits of increasing the publicity of chronic conditions like diabetes. In fact, I, too, encourage my daughter to confidently manage diabetes in public settings. But I sometimes catch myself in this act—because visibility should not be compulsory. If it becomes so, then a new norm has been codified, and it’s time to loosen its grip.

This issue is bigger than doing finger pricks in a public setting. It’s about individuals’ larger right to decide what, when, how, and with whom they share about diabetes.

In the last few years, there have been increased calls for individuals to share their stories of illness and disability. Think, for instance, of JDRF’s  #T1DLookslikeme campaign, which encourages community members to share day-to-day snapshots of life with Type 1 diabetes. Some individuals pose amid the detritus of the disease—used test strips, pods, and syringes—to evidence the daily regimens that are required just to stay alive. Others are pictured doing the things they love to suggest that diabetes is not defining.

This eagerness for first-person representation is also evidenced by the increasing number of platforms for exchanging stories. (First-person stories are by far the most popular form here on Insulin Nation.) And it is evidenced by the widely circulated saying, “If you don’t tell your story, then someone will tell it for you.” The advice is well-meaning, and it may have helped to create a climate in which more individuals feel authorized to speak. But it could also be received as coercive, no? It sounds like a mandate of intelligibility—one individual saying to another, “show me your face.”

I am excited about the increased visibility of patient communities, and I firmly believe that the sharing of individual stories is the most powerful tool that the T1D community has. I also think we, as a community, can and should do much more to support new voices. But I wonder… does a too-reverent attitude toward visibility create alternative forms of surveillance?

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Audrey Farley is a former editor of Insulin Nation.

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