I went to a meeting with my daughter’s preschool teacher, the head of the school, and a certified diabetes educator (CDE) soon after she was diagnosed with Type 1 diabetes to develop a plan for her diabetes care at school. The conference went mostly without a hitch. The CDE spoke, describing the signs of high and low blood sugar as well as how to manually monitor glucose levels, give an insulin shot, and carry out other management duties. However, there was one thing about which the head of the school was adamant: none of these duties were to be carried out in the classroom. Simply put, she said, exposing children under the age of five to blood and sharp objects was inappropriate.
The CDE, however, rejected this. She objected, claiming that diabetes was a biological fact and that there was nothing shameful about it. She claimed that my daughter’s condition ought to be obvious. for both her and her peers’ sakes. Shouldn’t children be taught to have empathy for people with physical differences? Additionally, she continued, toilets are extremely unhygienic, which dramatically raises the risk of infection when conducting diabetes-related duties there.
They argued back and forth about it. Does anyone care what I think? I can still remember thinking. Or even better, what would my daughter think? She desired to have control over her body even as a young child of five. When she was abruptly forced to follow a new set of rules, this yearning intensified.
The episode has stuck with me, possibly because it illustrates some of the ways that diabetic bodies are vulnerable to monitoring in such a striking way. Diabetes requires obvious self-management practises, unlike many other chronic ailments, which unavoidably elicits remarks that can range from inappropriate to the offensive. Examples include, “Gross! “Why are you shooting up here at the table?” or “I can’t stand the sight of blood.” Many people withdraw to private locations (typically, unclean bathrooms) to avoid such observation. Some people make an effort to be covert; for example, they quickly inject insulin while no one else at the conference table appears to be watching.
Mark Lucherni, a University of Edinburgh Research Fellow, recently studied this issue in the UK. Lucherni, who has Type 1 diabetes, talked to other people with the disease about their public management practises to see how they “perform” their diabetes regimens (follow society’s expectations for hiding leaking bodies from view). He also gave thought to the subtle ways in which certain people defy these conventions. In particular, his examination of the latter is intriguing.
Small instances of resistance are described by Lucherni, such as people’s cynical reactions to remarks made in public (“Look away, I’m shooting up now!” or “Better watch out so you don’t catch diabetes!”). He also examines subtle hostile behaviours, such as one participant’s propensity to push his glucose meter’s beep and click an insulin pen under the table as his peers scratched their heads trying to find the source of the noise. According to Lucherni, these sardonic actions have symbolic significance. They assist in “loosening the grip” of the standards that call for public institutions to always be spotless and sealed.
Anyone interested in the “biopolitics” of diabetes should read his analysis since it is fascinating. However, it assumes that being invisible is and will always be the norm. Sometimes, as my example from earlier illustrates, people with diabetes are required to be visible.
Let’s talk about that CDE once more. I am aware of her good intentions, and I mainly concur with her regarding the advantages of raising awareness of chronic diseases like diabetes. In reality, I also support my daughter’s decision to firmly control her diabetes in public places. However, I occasionally catch myself doing this because being visible shouldn’t be required. If that happens, a new standard has been established, and it’s time to let go of it.
The problem goes beyond sticking your finger in front of others. It concerns people’s greater freedom to choose what, when, how, and whom they disclose about their diabetes.
There have been more requests in recent years for people to share their experiences with illness and disability. Consider the JDRF initiative #T1DLookslikeme, which invites community members to post daily photos of living with Type 1 diabetes. Some people display the everyday routines that are necessary just to survive by posing amidst the disease’s debris, such as old test strips, pods, and syringes. Others are shown enjoying their favourite activities to imply that diabetes is not defining.
The growing number of channels for exchanging stories is another indication of the demand for first-person perspectives. (On Insulin Nation, first-person narratives are overwhelmingly the most popular style.) The adage “If you don’t tell your story, someone else will tell it for you” provides evidence of this. The advice is well-intended, and it might have contributed to the atmosphere by making more people feel comfortable speaking. Then then, it might be perceived as coercive. One person saying to another, “Show me your face,” sounds like a requirement for understandability.
The rising exposure of patient communities excites me, and I am convinced that the T1D community’s most effective resource is the sharing of personal experiences. I also believe that the community as a whole can and should do far more to foster fresh perspectives. Do other forms of monitoring arise from an overly reverent approach towards visibility, though, I wonder?
