Insulin-Pump Accessories And Cyborg Embodiment

My first reaction to Jessica Floeh‘s line of insulin pump accessories — cleverly named Hanky Pancreas — was clear and uncomplicated: those are so pretty and I want them.

I imagined myself wearing outfits organized around cascades of shells, feathers, and beads, articulating a personal style concept like urban mermaid, embodying Beach House’s Devotion, or glamorizing my weekend jeans-plus-t-shirt ensemble with elements of burlesque costuming. Knowing that these objects would be anchored by my insulin pump gave the enterprise a sort of steampunk appeal, and this excited me, too (I didn’t immediately recognize the suitability of these designs to shabby-chic, nostalgic Victorian, or popular bridal aesthetics, but looking again, I see they’re there, too). But there’s more at stake in Floeh’s designs than the cultivation of a particular cyborganic aesthetic.

The purpose of Hanky Pancreas accessories seems straightforward: dress up your pump. Or, more to the point: camouflage your robotic pancreas with embellishments — like fake flowers, seashells, feathers and beads — that invoke the feminine, the natural, and the ephemeral. The idea of embellishing one’s pump is a game-changer; doing so in a way that enables an expression of femininity is even more remarkable. Most pump cases, pouches and holsters for adult pump-wearers are designed for function, and little else. With their liberal use of nylon, velcro, and elastic, and their neutral and dark palette, most pump accessories appear to have come from the physical therapist’s clinic, or the paranoid tourist’s luggage. They secure the pump without drawing attention to its existence (and, by extension, to the fact of the wearer’s diabetes). Floeh’s designs pursue a different agenda. In addition to keeping the pump in place, she suggests the holders have affective and transformative potential:

The current collection is for women and represents a series of design solutions that better integrate the machine with the body and mind. By turning medical device into fashion accessory the designs alleviate anxiety, create dynamic communities, and encourage new relationships with medical technology. […] The designs intend to inspire internal change through external change in order to improve overall health.

There’s a lot to unpack here. It may seem that Floeh promises more than an accessory can deliver, but her claims don’t seem so far-fetched when we think about the pump as a nexus for a tangle of (wearer) concerns around gender, sexuality, dis/ability, and personhood. When I went on the pump, my pressing questions weren’t about the pump’s mechanics, or how I’d insert my infusion sets, but about how I’d sleep and have sex, how the pump would work (or not) with dresses and burlesque costumes, and what this would add to my mental list of daily diabetes-management responsibilities (i.e., always carry fresh AAA batteries, make sure the reservoir has enough insulin before leaving for work, have spare infusion sets at the office). I relied on advice and support from a queer femme diabetic friend, who helped me articulate connections that made the transition easier: queering diabetes gave me a critical framework for being diabetic in relation to normalizing social and medical structures. And it helped me extend the feelings, thoughts, and politics I’d developed around my queerness to my diabetes: resisting shame and pathologization; making connections across embodied differences/identifications/situations (and committing to an ethic of care as part of this practice); celebrating norm-challenging bodies; and fostering a sex-positive culture in opposition to the dominant cultural tendency to infantalize or de-sexualize people with disabilities and chronic illnesses.

I was also lucky to have studied the history of the U.S. AIDS activist movement, to have read Donna Haraway’s A Cyborg Manifesto: Science, Technology and Socialist-Feminism in the Late Twentieth Century and Eli Clare’s Exile and Pride. I wish I’d read Michelle O’Brien’s Tracing This Body, because it’s helpful to think with as we occupy positions in which we’re both resisting and depending upon oppressive systems (e.g., pharmaceutical development, manufacture, and trade; transnational capitalism) and can’t live in accord with a radical politics of purity. All this is to say that when the time came for me to start wearing the pump, I was lucky to have an amazing conceptual-political-emotional toolkit at the ready. This is not the case for the majority of pump-wearers.

A couple of months ago, a friend sent me a link to a BoingBoing post directing readers to an essay by Jane Kokernak. Kokernak writes about how living with the pump has negatively affected her sense of sexual self. For Kokernak, wearing the pump is an inherently un-desirable way of being. She opens with the claim that:

A $6,000 insulin pump with an on-board computer chip is not alluring. Neither is the white mesh adhesive patch on my naked abdomen or the length of nylon tubing that connects the patch to the pump. There is only illness, and there is no way to make that sexy. After several years as a medical device wearer, I know.

Clearly, the privilege of having access to (i.e., affording the health insurance to cover) the pump is diminished by Kokernak’s experience of de-sexualization. The pump also threatened her sense of gendered self, and meant trading one kind of security and wellness for another:

Although the pump offered me better health and the hope of fewer long-term complications from diabetes, wearing it made me feel fragile and also inexplicably obsessed with doubts about myself as a woman.

The pump effectively introduces vulnerability, disruption, insecurity, and loss of sexual self in her experience. Because I know only one type 1, pump-wearing, conventionally-female-gendered, straight diabetic, I don’t know how common Kokernak’s experience is, or which aspects may be shared (or not) among other diabetic women. A blog post Floeh wrote about the rationale for Hanky Pancreas suggests that Kokernak is not alone — and that the pump threatens many women’s ability to maintain their preferred gender presentation. She writes:

My family friend told me that she would even switch back to injections when she wanted to wear a tight dress. Some women don’t place it in their cleavage because of their chest size. And one woman actually got breast enhancement surgery to hide her pump better.

For these women, the pump is a material obstacle to (feminine) gender expression that demands a material solution – it’s not just an issue of affect or subjectivity. In these instances, maintaining a preferred gender means making choices with serious physical consequences. It’s clear that in this world, wearing the pump doesn’t mean re-making gender in ways that seem liberating or transformative. Instead, wearing the pump creates another barrier to embodying an already-impossible ideal (normative) gender.