We’re thrilled to present our first Threadbared guest contributor, and long-time interwebz interlocutor, Alana Kumbier. Alana Kumbier is a femmebot, type 1 diabetic, (radical) reference librarian, and super-commuter. She is co-editor of Critical Library Instruction: Theories and Methods, and contributes to Arcades Collaborative, a critical information studies blog. In her free time, Alana performs with The Femme Show and TraniWreck, is a member of the Boston Radical Reference Collective, and co-produces a monthly podcast, Champs Not Chumps.
If you live in the NYC area, and want to see the insulin-pump-burlesque number in person, you can do so this Saturday (June 5), when The Femme Show visits Collect Pond in Brooklyn. If you come, please say hello! I (Alana) <3 cyborg solidarity!
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 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 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.
The practical implications of pump-wearing also play out in the sexual realm. Kokernak draws attention to the ways in which the pump interrupts (and thwarts) her ability to be sexual. While our experiences of transitioning to the pump may have been quite different, her description of the logistical difficulties one encounters while dressing (or undressing) for sex rings true:
Negligees and nudity are impractical, because neither provides much to clip the device to. Clothes and pajamas, on the other hand, have waistbands or pockets, which keep the pump steady during the prelude of kissing and touching. The pump can even be negotiated during the impatient slithering of fingers into nightclothes. If my husband and I lie on our sides, front-to-front, I can clip my pump against my hip. If I’m on my back and Jimmy wants to lay his full length on top of me, I adjust the pump along my waistband toward my back, so the hard case doesn’t press into his abdomen.
These are familiar negotiations. However, I experience them differently because of the way I have sex, and because of my history having queer sex (and safer sex and sex with toys). When a partner and I are having sex, we pause to accommodate (and often laugh about and fumble with) batteries and condoms and buckles and straps – taking a moment to un-tether myself doesn’t feel disruptive in this context. I was surprised, the last time I had sex with a new person, that I didn’t formally introduce him to the infusion site in the way I had with previous partners, because I felt confident that his first encounter with the small piece of plastic and some medical tape at my infusion site wouldn’t ruin the moment. But that’s a hard-earned confidence, and one that derives from my queer crip affinities and experience.
If we understand pump-wearing as a practice in which key aspects of subjectivity and personhood are articulated (and in which sex is had or not, and dresses are chosen or discarded!), the prospect of having a new resource – in the form of Floeh’s creations –matters in some significant ways. And if Floeh’s designs render the pump less of a threat, a disruption, or fashion-obstacle, this seems like an improvement. Floeh’s designs permit wearers to make a strategic double-move around camouflage and visibility, simultaneously hiding the pump and drawing attention to its location (i.e., waist, hip, bustline). When I’m in disability-pride mode, I’m troubled by this kind of hiding, following the logic that visibility is good (i.e., wearing the pump on the outside makes us legible, shows the limits of clothes designed for bodies without peripherals, disrupts conventional, hetero feminine gender presentation) and hiding is, well, hiding, with its affective companions: shame, fear, desire for normalcy, willingness to pass.
But visibility is only one tactic among others, and hiding the pump can also be a radical act – especially if it facilitates feeling-good-while-diabetic (for example: the best act in my burlesque repertoire hinges on repurposing a strap-on harness as an under-dress pump-holder; most of the time, my solution to the dress-problem is a jury-rigged system involving a black garter with small cosmetics pouch from Benefit, bra straps, and safety pins to keep things from sliding down my leg – unless I’m already wearing a garter belt). Of course, in the case of hiding or disguising one’s pump, feeling good can also mean feeling closer to a conventional femininity and mythic norm. I don’t want to elide that possibility, but I also return to the reality of living with chronic illness: that we live in a space of contradiction, that we work with what we have & do what we need to do to claim our (sick, cyborg, incurable) bodies as desirable. In my ideal world – one I suspect Floeh wants, too – we’ll recognize that transformation can (and should) mean more than transforming the pump, or the wearer’s relation to it, to align more closely with a dominant, normate feminine ideal. Creating, enabling, accommodating, and celebrating a multitude of diabetic, cyborg embodiments — and advocating for wider access to the pump (with all of its troubling potential) for those who are uninsured and can’t afford the $6000 price tag — these are the kinds of social transformations that need to happen in conjunction with personal ones.
I’m curious to see what happens when Floeh’s products actually hit the market – who wears them, what kinds of feedback she receives, and how people incorporate them in their daily lives and outfits. Because the designs are not yet for sale, I’m bracketing my discussion of the politics of purchasing these products. I’ll be interested to see how accessible her products are in terms of price, and how other factors – like buying from a diabetic, or buying handmade, or extent of desire – will figure into my decision about making a purchase. Floeh’s personal story and motivating belief in the designs’ transformative potential signal that she’s in this for more than the money; she further supports her empowerment ethos with a free tutorial showing how to re-create one of her designs. By providing open access to these instructions, Floeh encourages the crafty among us to come up with personal interpretations of her concept (I sure hope she makes room for a gallery of Hanky-Pancreas-inspired projects on the site).
Regardless of whether Floeh’s designs deliver on the promise of transformation, she’s doing the important work of drawing attention to the struggles many women encounter with the pump, and to the ways diabetics negotiate social norms around gender and sexuality (i.e., it’s not just a medical issue, an access-to-healthcare issue). And if a woman like Floeh (read: beautiful, stylish, nature-loving) can claim cyborg status, we can hope that women who might be otherwise averse will want to follow her example, and our robotic pancreases will become an extension of our bodies in action, in love, in fashion, feeling good.