Daniella, type-1 diabetic, died in her sleep Tuesday morning, November 8th from low blood sugar. Many blogs and JDRF advocates are clinging to her story and death with rhetoric that emphasizes the dire need for a “cure.” I am also an advocate for the cure. But I am also very critical of it when socioeconomic intersections and historical contexts are taken for granted in such rhetoric.
In e-mails that I’ve received in the past day or two, Daniella has been framed as a victim of chronic disease. Words like “sad” and “too soon” are attributed to her death. Phrases such as, “This is the reality of this disease. It happens without prejudice…to families that are working hard to keep their children safe,” are circulating on Facebook and the diabetes blogosphere. It is without question that diabetic experiences are marginalized, rendered obtuse and thus scary. Here I would like to acknowledge Daniella’s life with the utmost respect, and I would like to try to imagine a way that we can think about and talk about Daniella’s death (and the thousands of deaths like hers that correspond to incurable disease) without embedding such deaths with fear and anxiety.
Underlying all of this, I am left thinking about Western medicine’s emphasis on the cure, and its stigmatization of incurable conditions. I am also left thinking about Western science and medicine’s mission for longevity. Some might call it biopolitics, or biopower. Some might call it capitalism, and its heteronormative conceptualizations of time and place. Well, if we center Daniella’s life experiences with incurable disease, if we center her death within her own experience of temporalities and spatialities, maybe she isn’t victim after all and maybe death isn’t so scary, after all. A crip time and place, perhaps? Rest in peace, Daniella.
“Most people are deeply reluctant to believe that bad things happen to people who do not deserve them, or seek them, or risk them, or fail to take care of themselves. To believe this as a general proposition is to acknowledge the fragility of one’s own life; to realize it in relation to someone one knows is to become acutely aware of one’s own vulnerability.”
–Susan Wendell, The Rejected Body