By Laura Forlano
Hacking the Feminist Disabled Body
Abstract
This article develops feminist understandings of hacking the body through a personal engagement with the socio-technical systems that are used to manage chronic disease and disability. Drawing on science and technology studies along with feminist studies about the mediated body, this essay develops a feminist understanding of hacking through an ethnographic account of the first several years of living as a Type 1 diabetic with an insulin pump and continuous glucose monitor. In particular, I will describe the ways in which these devices discipline everyday activities including: the tensions of being embedded with competing proprietary systems: the ways in which I disobey the devices and they disobey me; the ways in which we collaborate; the invisible labor required to navigate everyday life; and, the ways in which this experience challenges and extends notions of what it means to be human during a time of networked things and bodies. This critical analysis of the embodied experience of using and becoming part of a network of medical technologies serves to complicate the revolutionary claims about hacking and technology. Instead, they bring to life the ways in which these technologies reconfigure definitions around what it means to be human, enable unique socio-cultural hacking practices even among mundane activities in everyday life, reshape the boundaries between public and private, allow for failure, and create new kinds of bodily labor. Through this analysis, I argue that a feminist hacker ethic(s) features the disabled body (along with all of its features and bugs) as an important site of socio-technical engagement.
Introduction
I am not a hacker or a maker. I do not tinker or tailor, knit or bake. I am more likely to buy it than DIY it. So, why should I write an essay on hacking the feminist body? In fact, it is only through my own body’s failure and breakdown that I have come to participate in and redefine the socio-technical practices that constitute hacking and (un)hacking. Like my own cyborg body, the narrative that follows – at times intimate and personal and sometimes abstract and theoretical — is a kind of hybrid.[i] It is through this hybrid scholarship that I hope to contribute to the development of a deeper understanding of a feminist hacker ethic(s).
While I may have previously disavowed the hacker and maker identity, I do geek out. Quite a bit. Mainly about infrastructures and architectures, Wi-Fi networks and networked things, wearables and laser-cut fashion. I am interested in the ways in which these socio-technical systems shape even the most mundane details of everyday life — their politics, materialities and aesthetics — as well as what it means to be human in this context. In a way, the best thing to ever happen to me as a scholar was finding out that I am Type-1 diabetic four years ago. In line with much feminist theory, which elevates the importance of embodied ways of knowing and making sense of the world, my research quite literally landed directly on my body. So, what does it mean to hack the feminist, diseased and disabled body?
Since academic scholarship and professional practice are rife with comparisons, competition and politics, turning research and reflection from my mind (in studying others) to my body (in studying myself) is in some ways a transgression in itself. It is a project that no one can take away from me, take credit for or repeat in any authentic way. It is a narrative of becoming and hacking into a diseased and disabled body, everyday rituals, failure and breakdown, and the invisible labor that contributes to its maintenance and repair, which points towards a feminist hacker ethics as well as important considerations for the design of socio-technical systems. I believe that we have much to learn about the ways in which disabled bodies participate in the world with and through particular technologies in unique ways that can inform the development of this much needed perspective. For example, in what ways do the devices discipline everyday activities such as eating, sleeping and getting dressed? In what ways do intellectual property debates play out on the diseased and disabled feminist body? What does it mean to disobey the devices (and their norms and guidelines) and what are the repercussions of such disobedience? What new kinds of labor are required in order to navigate everyday life in tandem with these technologies? Finally, how does this experience challenge or extend what it means to be human during a time when more and more networked things (Ingold, 2010) are augmenting our cities and homes as well as our minds and bodies?
Theorizing the Feminist Disabled Body
Due to their relative lack of diversity and inclusion (Bueno, 2014), which has been well documented both within Silicon Valley as well as from afar, masculinist approaches to hacking, tinkering, geeking, and making focus on places and projects that continue to create explicit divisions between traditional Western dichotomies of male and female, mind and body, work and personal, subject and object, able and disabled and public and private. Specifically, feminism has a history of contemplating the body as the material site where socio-technical tensions and ‘matters of concern’ (Latour and Weibel, 2005) play out in everyday life. For example, for a recent symposium on “Hacking Feminism”, the organizers questioned what the core feminist arguments of corporeality, materiality, embodiment, affectivity and experientiality mean in an era of big data and ubiquitous computing.[ii] While these tropes have taken on new meaning, their role in challenging rational, scientific logics of capitalism and, in particular, the health and medical industrial complex is significant. My understanding of feminism is shaped by feminist Science and Technology Studies (Suchman, 2007a, Suchman, 2007b, Harding, 1987, Harding, 2004, Wajcman, 2000, Wajcman, 2007, Wajcman, 2009), which emphasizes the social construction of technology (Pinch and Bijker, 1984), the dissolution of categories, the validity of multiple forms of knowledge rather than one truth, and the importance of the contextual and local. Furthermore, Wajcman argues that “technofeminist approaches emphasize that the gender–technology relationship is fluid and flexible, and that feminist politics and not technology per se is the key to gender equality,” (2007). Rather than continuing to emphasize existing gender categories, feminist scholarship has argued that it is useful instead to think about the lived body, which does not distinguish between nature and culture, while at the same time, continuing to theorize about gendered social structures and their relationship to inequality (Young, 2002, Young, 2005). With respect to feminist engagements in health and technology specifically, Michelle Murphy illustrates the ways in which women in the US and Canada in the 1970s developed a form of “protocol feminism,” which emphasized the engagement with and activist organizing around particular technologies related to reproductive health in the face of opposition with the medical establishment (Murphy, 2012).
Several recent papers and workshops have emphasized the contributions that a feminist perspective might bring to the fields of human-computer interaction (Bardzell, 2010), design and the practices of hacking. Specifically, Bardzell (2010) argued that a feminist HCI methodology should include: a commitment to both scientific and moral objectives, a connection to feminist theory, a deliberate use of methods based on values and goals, an empathic relationship with research participants, transparency around the role of the researcher along with their beliefs, co-construction of research, mixed methodologies and reflexivity. In this article, feminism is understood to be pluralistic with respect to race, gender, sexuality, class and ability with a focus on agency, fulfillment, empowerment, diversity, and social justice.
Some of these commitments are also emphasized by recent scholarship on new materialism (Iovino and Oppermann, 2012, Parikka, 2011), object-oriented ontology (Bogost, 2012), the new aesthetic (Berry et al., 2012, Bridle, 2011) and digital materiality (Dourish and Mazmanian, 2011, Gillespie et al., 2014), which have engaged with the ways in which objects matter in the shaping of everyday life as well as the ways in which the digital shapes physical bodies, objects and environments. According to Jackson and Kang (2014), “to be human is to be embedded, constituted and completed in a world of things, as a fundamental aspect and building block of our natures. Humans are made human by addition, not subtraction: completed rather than compromised through sustained and careful engagements with a world of things.”
Another area of research that is relevant to this discussion is the field of disability studies (Alper, 2014) in particular because of the ways in which the literature on hacking, tinkering, geeking and making focuses primarily on those that have or are believed to be able to easily develop the skill or ability to participate without consideration of the limitations or constraints. In 2008, diabetes became acknowledged as a disability rather than an illness as part of the Americans with Disabilities Act Amendments Act, which means that diabetics cannot be denied employment and that they have the right to fight job discrimination.[iii] While an in-depth review of this literature is not within the scope of this article, my account of living with disability allows for the expansion of notions of feminist hacking along these lines. Throughout this article, I refer to both disease and disability in order to account for both the medical as well as the political framing of the issues.
There is currently considerable debate about the ways in which hacking is presented as an emergent form of subjectivity and mode of techno-political engagement (Ames et al., 2014, Irani, 2015). On the one hand, it is imagined as a participatory and open form of engagement while, on the other hand, it is deemed an elitist practice and a means of producing particular kinds of citizenships and subjectivities that are tied to entrepreneurship and innovation. A deeper understanding of the usefulness of the term hacking in the context of feminist practice might connect with its earlier definitions. According to the Oxford English Dictionary, hacking has three distinct meanings: 1) to cut with rough or heavy blows; 2) to use a computer to gain unauthorized access to data in a system; and, 3) to manage or cope.[iv] In this essay, I deploy all three of these definitions of hacking. First, the very literal hacking into the body through the pricks, cuts, punctures and holes that I inflict on myself on a daily basis. Second, hacking as a way of participating in (and breaking the rules and norms around) a particular system of technologies including questions of the ways in which race, class, gender and sexuality might enhance and/or inhibit that participation. This extends to discourses around tinkering, DIY and creating my own knowledge and logics about my body and the medical devices that I use. And, third, hacking as managing and coping with disease and disability (Davis, 2006, Alper, 2000) as the ways in which I reconfigure and adjust my daily routines and rituals (particularly those around eating and food but also those around exercise and extra-curricular activities). In the development of a feminist hacker ethic, it is important to holistically attend to all three of these varied meanings and the unique issues that they surface. One might also draw relationships between these meanings of hacking vis a vis the body and discussions about transgendered bodies, biohacking and the quantified self. Hacking can also be understood as a way of doing theory and practice (Forlano and Jungnickel, 2015).
I draw on recent scholarship on hacking in the fields of media studies and science and technology studies including the ways in which the socio-technical are implicated in particular forms of gendered and racialized identities (Dunbar-Hester, 2008, Dunbar-Hester, 2010) as well as in norms around citizenship and the formation of publics (Kelty, 2005). My secondary reason for deploying the concept of hacking is also linked to the reputation of hackers as tricksters that are characterized by their humor and wit (Coleman, 2012, Coleman, 2014). At times, living with a chronic disease and disability such as diabetes can be a comedy of objects – a humorous negotiation between the human body and an entirely new set of actors such as:
test strips
needles
insulin vials and pens
canula, tubes
blood tests
doctors visits
acupuncture
glucose tablets
lancets
food scales
cables
AAA batteries
carrying cases
measuring cups
adhesive surfaces
Xerox copies
nutrition information
sensors
receivers
transmitters
lab visits
downloads
Excel spreadsheets
conversion rates
charts
alcohol swabs
more doctors visits.
These technologies can be understood as a socio-technical system of human and non-human actors or the inhuman (Hird, 2012) as it has been referred to in Feminist Science Studies. In this way, diabetics can been understood as a kind of cyborg—a hybrid of flesh, bones and blood along with sensors, tubes and external devices. Since Harraway’s (1991) account of the cyborg self, scholars have argued for the important role of hybrids (Michael, 2004) in mediating discrete, rational categories such as the digital and the material, black and white, rich and poor, gay and straight. These cyborg narratives have only become more relevant as humans have become increasingly augmented with networked technologies such as mobile phones, the quantified self and augmented reality glasses. Yet, most discourses around these technologies that originate in Silicon Valley make positivist assumptions about the importance of certain kinds of sites of innovation such as hackerspaces, incubators, coworking spaces, startups and Maker Faires (Suchman, 2011) as well as the value of the transmission of data (geolocation, calories burned, video captured) rather than a more qualitative description of the rituals (Carey, 1988) and the mess (Law, 2004) of data and devices when juxtaposed with human systems in the everyday life a cyborg body. Drawing on science and technology studies along with feminist studies about the mediated body (Cárdenas et al., 2009), the narrative that follows illustrates that rather than acting as smooth operating systems for the body, these devices are rife with frictions (Kang and Cuff, 2005, Tsing, 2005), dissensus (Mouffe, 2003), conflicts (Hillgren et al., 2011) and agonism (DiSalvo, 2012).
In this article, I take on a few of these points of tension through an analysis of my own experience through the lens of feminist hacking and disability based in science and technology studies. In this way, I am able to take on a new technopolitics as a feminist hacker engaged in a reflexive process of reconsidering issues of identity, hybridity, self-care and maintenance, labor and capitalism. I offer a nuanced account of the ways in which these issues play out in the everyday, lived experience of a particular kind of disabled cyborg. While individualistic in its nature, this narrative is the first step towards the production of a peer community that can embrace and enrich discussions about the definition of a feminist hacker ethic that is distinct from emancipatory masculinist accounts of hacking, tinkering and making.
Becoming Diabetic: Hacking into the Body
Being diagnosed with chronic disease and disability is not a matter of 1’s and 0’s. It is not a binary condition of “now you have it or you don’t.” It is a process of becoming a different person with new rituals and practices over a long period of time. My process of becoming began about 4 years ago. I returned from a trip to Israel and Jordan, got a tenure-track job offer and a Fulbright grant. As part of the grant administration process, I was required to get an annual physical in order show that I was fit enough for to undertake international research. It was then that I learned that I am diabetic and what was to become a long process in the diagnoses and management of chronic disease and disability, which involved 4 different doctors over several years.
Unsurprisingly, the most immediate adjustment was enrollment into various processes of calculation including how much of any given food I could eat, what I could eat and how to test my blood sugar six to eight times a day with an assortment of devices including a glucose meter, lancets (tiny needles), test strips and alcohol swabs. For about a year, I was told that I could only eat carbohydrates (carbs) in 15-gram increments. I had no idea how much this was. I had never counted a calorie in my life. What I did know is that I loved carbs! Especially hand-pressed Japanese soba noodles, clear Korean jap chae, miso ramen, Chicken noodle soup, linguine a le vongole…OK, let’s be honest, any kind of noodles…Neapolitan pizza, Chinese dim sum dumplings, peirogis. I was never one for dessert and, in fact, I usually skipped it completely. Yet, naturally, there were a few things that I did like: Japanese red bean cakes, tiramisu and mint chip ice cream or just about anything with caramel. As an Italian-American with a study abroad in carb-crazed Japan and Italy, this Distributed Denial of Carbs was going to be rough.
Well, I have digressed. 15 grams of carbs is equivalent to 4 oz. of orange juice, ¼ of a bagel or ½ of a banana. Now, I don’t know about you, but there was no way that I was going to go into Russ & Daughters on Houston St. on New York’s Lower East Side and ask for a quarter of a bagel with schmear. And so, life went on, my diet became a steady supply of nuts and cheese (two of the only things that I could manage to find that had no effect on my blood sugar because they were entirely comprised of fat). Despite this, I lost 20 pounds by the end of the year and the numbers (blood sugar) were still rising steeply. When, after about six months, my first doctor, a Russian woman with an Italian last name, wanted to put me on a medication, I found another one, always having an aversion to medications and doctors of all kinds.
This doctor had an esteemed reputation but he looked sickly and was easily over 80 years old. As a result, I was less trusting of his ability to take an active role in helping me to navigate the many decisions that I would have to make that summer. He said that I could eat carbs (bread, for example) and prescribed me insulin delivered in a pen-like device with screw-on needles. The insulin was “long-acting” and it remained in your body for about 12 hours so I did a shot in the morning and another in the evening. This was relatively easy to manage since I was at home in my own environment at both times. The numbers got better and that July, I was tested and learned that I was a Type 1 diabetic. As a result, the insulin regime changed and I was prescribed two different kinds of insulin. One before meals and one in the evening.
In August 2013, at the advice of a fourth doctor, who happened to be a young and energetic woman as compared to my previous doctors, I decided to transition to the use of an insulin pump (a device that supplies the hormone insulin to the body through a small tube) and continuous glucose monitor (a device that uses a sensor, transmitter and receiver in order to display blood sugar readings in real-time). One morning, I went to my doctor’s office and there I met a representative from Medtronic, the producer of the pump, who helped me connect the pump to my body. Remembering the steps for changing the “infusion set” (the system of technologies that joins the pump with the body) was difficult at first. The process often took up to 15 minutes. Each time, I took out the instruction sheet and followed along carefully. But still, at one point, I managed to forget an important step, having attached the tube to my body before I had filled it with insulin. I pulled out the infusion set and started over again, not knowing that I could have actually just screwed off the cap and filled the tube that way as a workaround. More recently, this once-complicated process has become a 3-5 minute, second-nature task in self-maintenance akin to putting in contact lenses or brushing my teeth.
To connect this personal experience more directly to the definitions and practices of hacking that were introduced in the previous section, hackerspaces have recently become interested in the biohacking as a site of practice. Starting to use an insulin pump and continuous glucose monitoring system, is a practice of literally hacking into the body by piercing it with little blue lancets and long silver needles, and punching holes in the abdomen for the insertion of sensors and canula. The interaction with the body is fairly clinical in that one is prevented from seeing the needles by caps, covers and insertion devices, which obscure their view. But, occasionally there are reminders – mainly bruises, blood and a roving constellation of little holes all over my stomach — that the skin interface between the body and the device is actually a living surface. The following personal narrative serves as an example:
One day last September, I was having lunch with a new colleague in a small Vietnamese restaurant in Wicker Park. But, before I could eat, I needed to refill the little clear plastic vial of insulin and reinsert the tubes under my skin (since I did not have enough insulin left in order to eat lunch). When I yanked out the old tubes, to my surprise, a steady stream of bright red blood came gushing out of what was ostensibly a very small hole. This had never happened before, even after a year of being “on the pump.” I grabbed several paper towels and pressed down hard and used an alcohol swab to clean it. It took a good ten minutes for the bleeding to let up and I was finally able to change the tubes to another spot. I returned to the table and pretended that nothing out of the ordinary had happened.
This account illustrates the importance of particular kinds of identities – and, importantly, disabled identities — and what their inclusion and consideration might offer to the development of a feminist hacker ethics.
Getting Stuck on Kitchen Cabinets: Everyday Rituals and Interruptions
While much attention is placed on monitoring, tracking and transmitting the more quantitative aspects of the disease – uploading and downloading the data, measuring and inputting the blood glucose (BG) number — living with it requires the creation of new sets of everyday rituals and practices. Not only eating but also getting dressed, showering, exercising, sleeping, having sex. Each of these requires a certain negotiation with the device related to the context of use. What does it want to wear today? Where will it be seen/unseen? How long can I go without it? For example, taking a shower requires that I unscrew the cap that is fixed to the body and leave it on the counter before stepping into the water. Sometimes, I even get stuck on the knobs of the kitchen cabinets. Usually, this happens while I am groggily navigating around the kitchen in the morning with the pump clipped onto the waist of my pajamas. “Ouch,” I mutter as the knob pulls me back towards the counter when I am trying to go in the opposite direction towards the coffee machine.
Getting dressed is a human-machine collaboration. I stand with the pump in one hand trying out different ways of attaching the pump to my ensemble. Usually, I can put it on my belt and cover it with a shirt and blazer (though I question my own impulse to make it invisible as a kind of bodily infrastructure (Star, 1999)). However, this doesn’t always work if I am wearing a dress. In that case, I have a few options but my choice depends on the kinds of social situations that I expect to encounter during the day. Will I be at a reception where I need to access it quickly in order to eat or can I afford to clip it to my bra, rendering it more inaccessible (depending on the style of the dress’ collar). One way to cover it up (so that I can pull it out more discreetly) is by wearing a big scarf. While I have always been a fan of a colorful scarf, this new use as a medical privacy technology makes them even more appealing. The other way is to pull the tube through my sleeve hole (only if it is a sleeveless dress) and either put it in my jacket pocket or hitch it to a thin belt on the outside of the dress. When I met with the representative from Medtronic, he mentioned that a lot of his clients sew small pockets into all of their clothes or get really long tubes so that they can keep the pump in their boots. Along these lines, Hanky Pancreas is a design project that is aimed at “tranforming diabetes technology into positive social objects” by augmenting insulin pumps with decorative flowers and designing scarfs that are specially designed to hold the pump.[v]
With regards to sex, disabled bodies are often deemed to lack status as sexual beings (McRuer and Mollow, 2012). At the same time, in mainstream culture and entertainment, there is a glamourization of sexual attraction to and fetishization of machines – both those that are not embodied in human form but rather reside in an operating system as well as those embodied as robots. For example, the recent films and television programs, Her (the 2013 movie by Spike Jonze), Ex Machina (the 2015 movie by Alex Garland) and Humans (the 2015 British-American science fiction series by Sam Vincent and Jonathan Brackley), reinforce the familiar trope that the male protagonists can be sexually attracted to and emotionally involved with machines. It is not clear whether the reverse is also true since the power dynamics of Hollywood and the entertainment industry tend to repeat these particular narratives while ignoring the female sexual experience altogether. As a disabled cyborg body, there is a kind of shame associated with taking off ones clothes or wearing a bikini at the beach for fear that your hybrid body will be necessarily deemed less attractive, strange or abnormal. Yet, it is possible that these norms are changing with increased visibility of and exposure to insulin pumps and other medical technologies that are worn on the body such as the pump worn by Miss Idaho in the July 2014 swimsuit competition.[vi]
Like any technology, there are a number of common interruptions and breakdowns that occur on a daily basis. Below is a personal narrative that illustrates the nature of these interruptions, which are typically only minor intrusions in everyday life:
During my first week using the insulin pump, I was at the movies. In the dark. All of a sudden, the device started buzzing. Every few minutes. Bzz. Bzz. Bzz. Bzz. I had no idea what was going on. What did it want from me? For it was not a cell phone with a human on the other end that was seeking my attention. I fumbled around. I recalled that there was a light on the thing but I could not remember which button to use in order to activate it. After some trial and error, I found the green glowing light. It was the “LOW RESERVOIR” alarm. This alarm activates when you have less than 24 hours of insulin left. I successfully turned it off and got back to watching Lee Daniel’s The Butler.
The continuous glucose monitor has an equally intrusive alarm. It buzzes both for high (250 mg/dl) and low (80 mg/dl) blood sugar readings and, in the worst case, after several attempts to alert you, it resorts to making a very high-pitched screeching noise. This is particularly unwelcome when dining or conversing with colleagues at conferences and the like. While, in general, the devices fit in and resemble other personal, mobile technologies in that using them is not much of a distraction, they do not behave in the same way. Their sounds diverge from the familiar family of Apple iPhone ringtones. They speak in tongue. The uninvited stranger at the dinner party.
Like any socio-technical system, participation in (and becoming part of) a network of medical devices can be defined by inherent frictions, failures, limitations, breakdowns and interruptions. However, in contrast to other technologies, which are claimed in a revolutionary manner to provide smooth, seamless and efficient operations for management and control, the representative from the company that produces the insulin pump acknowledged that this technology would never be perfect. This, of course, is because of the many factors that can influence (and also that can be helpful in managing) one’s blood sugar: sleep, stress, food, hormones etc. Thus, even with the same objective measurements and inputs, the results might still be quite different. Unlike other technological systems, the interaction with the human body itself is what produces the system’s lack of accuracy in a very observable way. Here is a personal example of the ways in which things can go wrong on a day-to-day basis, even when all of the “right” steps are followed:
One night, I changed the infusion set right before hosting a dinner party. (The infusion set, is the system comprised of a short tube that goes under the skin called a canula and a long tube that connects it to a small vial of insulin that goes into the pump. The insulin is pushed out of the vial with a little screw.) I was running a bit late so I did everything quickly before the guests arrived. Throughout the evening, I noticed that the numbers were rising but I assumed that I had made a mistake in the calculations since we were eating a lot of unfamiliar foods in unfamiliar amounts. By the end of the night, the numbers were so high that they rivaled only the results of a 13-hour flight to Japan (before I used the insulin pump) during which I’d eaten a very high-glycemic and high carbohydrate meal of white rice and a turkey sandwich without being able to leave my seat in order to do an injection.
After the dinner party, despite corrections and re-corrections, I woke up several times throughout the night to the monitor’s buzzing but the numbers barely changed at all. I forwent breakfast not wanting to cause any additional problem. Around lunchtime, I decided that something was definitely wrong. I checked everything to see that it was working properly and found that the insulin was actually leaking out from under my skin. I yanked off the bandage-like device and found that the little tube was completely bent in half.
In my case, while I can “feel” when my blood sugar is too low – sweating, lack of concentration, weakness – I cannot perceive any difference between my “normal” state and when my blood sugar is too high. While, on the one hand, I resist the need to constantly monitor my body through data flows, there is no other way to observe or interpret the situation of when my blood sugar is too high. This account illustrates the extent to which everyday routines, habits and rituals – rather than the transmission of data, code and information – are important in the development of a feminist hacker ethics.
Skin as Human/Non-Human Interface
Choosing to adopt a medical device for the management of chronic disease and disability challenges, contradicts, extends and expands notions of what it means to be human. In a time when more and more networked things (Ingold, 2010) are augmenting both diseased and disabled and non-diseased and abled bodies as well as domestic, public and work environments, my experience hints at emergent understandings of human-non-human relations and how these relations become more intimate over time. My internal data is streaming through these devices in real time, 24 hours a day (except for the intervals in which I am resetting or reinserting them. They are constantly disciplining my body and serve as a reminder (Shklovski et al., 2009) of my disability. As such, I am part of them, and they are part of me.
Such claims were made in the late 1990’s about cell phones being a kind of prosthetic extension of the body, an intimate relationship to be sure. Yet, even with other medical technologies such as eyeglasses, it is possible and even desirable to get away from them. With an insulin pump, you can only be detached for an hour or two before glucose levels begin rising quickly and dangerously. It becomes part of you and is literally attached in a way that your cell phone will never be. While one would think that it would take some time for the intimacy and attachment between the human body and the technological device to develop, in my case, it was almost instant. For example:
That first night, sleeping with the device latched onto my pajamas, I felt very safe and secure. My pancreas was broken and my body was toxic (Chen, 2011) but this new part made me whole again. Sometimes, I leave the house and suddenly think that I have forgotten to reattach the pump after getting out of the shower. I quickly clutch my belt in a panic as if looking for a phantom limb.
In attaching wireless devices to the body, the skin becomes a hybridized space that is an interface between the digital and the material. These arguments have been made by pioneers in fields such as physical computing, wearable technology, computational fashion and digital fabrication (Buechley et al., 2013, Seymour, 2008, Hartman, 2014). As computing has moved off of the desktop (Weiser, 1991) and simultaneously occupies a range of different scales – urban, building, object, environment, body – we must consider the ways in which hacking feminism and the development of a feminist hacker ethic might allow for a deeper, richer and more nuanced understanding that extends and expands Haraway’s notion of the cyborg. In doing so, we might better describe and capture the distinct everyday rituals and embodied experiences of living with particular kinds of embedded devices and materials: for example, clear plastic tubes poking just beneath the skin’s surface and small grey radio transmitters protruding outwards in unfortunate bumps. Just as the skin is already performing many functions that allow the body to mediate the world – for example, the sensation of touch, the ability to absorb the rays of the sun or water – in the case of these specific medical devices, we must acknowledge its important role as the broker of human/non-human relations as well. It is in this role of mediating the digital and the material that the above-mentioned concepts of friction are relevant.
This account illustrates the ways in which the disabled cyborg illustrates a more complex account of hybridity that is not a fusion of computer and human with an enhanced set of capabilities. It is not a reified cyborg with a seamlessly integrated natural and artificial body but, rather, a set of parts — some human and some non-human — that form an awkward patchwork of particular sites on the skin. These sites are rotated from day-to-day and week-to-week, which in turn can impact the speed at which insulin is absorbed into the body. In this way, and in this unique case, the exact relationships and intimacies between the human and the machine are dynamically altered. In rendering the abstract notion of the cyborg more concrete, material and embodied through these examples from lived experience, I focus the further development of a feminist hacker ethics on new sites for theory and practice that builds on earlier theories from feminist science and technology studies.
Bodily Intellectual Property and Anti-Capitalist Practices
As a hacker of the feminist body, intellectual property debates play out in a most intimate embodied form, literally under my skin. While many areas of software and (increasingly) hardware have benefited from the work of open source communities, medical devices and software have been slower to develop open source solutions in the healthcare field due to the high cost of research and development, lack of competition and concerns over security and accountability. In my case, this meant making the decision to adopt two competing and incompatible devices in order to monitor and manage chronic disease and disability. First, the insulin pump is made by a company called Medtronic – it is one of the largest companies that produces this device. While the company has its own proprietary sensor technology that communicates blood sugar measurements directly to the pump, my research and conversations with several doctors at various hospitals suggested that its performance was less accurate than their competitor, a company called Dexcom. A third technology, a Bayer glucose meter (for self-testing your blood sugar), can communicate directly with the insulin pump but not with the glucose monitor.
The monitor (a receiver with a screen) illustrates blood glucose levels, which are based on measuring not blood sugar itself but “interstitial fluid,” on a chart that is visible in real-time. It alerts you when the levels are too low or too high, visualizes the speed at which the levels are rising or dropping and illustrates this on a timeline. While I had been using a FitBit – a device that is used to track the levels of physical activity based on the number of steps taken per day — on and off for over two years, watching the effects of different foods on my blood sugar levels became another way of entering into discussions of the quantified self. In order for the monitor to display information from the sensor, which is inserted under the skin and fixed in place by an adhesive cover that holds the transmitter, one must always be within about 20 feet of the receiver. This means carrying it with you to the bathroom and sleeping with it next to your pillow or in your bed. In choosing to adopt the Dexcom monitoring system, I negotiated between two different proprietary systems, which required carrying around an additional device with me at all times, making payments to two different companies and downloading data in two different formats that could not be integrated.
Yet, as with earlier technological developments, the automatic pancreas is only one of many competing systems that are leading the way in managing diabetes. For example, in 2015, Medtronic introduced the 640G, which includes a full color screen and is waterproof up to 3.6 meters for up to 24 hours. However, this pump is not yet FDA approved in the United States. And, other researchers are working on a bionic pancreas, a system that uses a smart phone, a continuous blood glucose monitor and two pumps – one to deliver insulin to decrease blood sugar and the other to deliver glucagon to increase blood sugar when it is too low – in order to more accurately mimic the work of the pancreas.[vii]
Some seemingly mundane parts of the system, like that plastic clip that attaches the pump to one’s belt, bra or jacket pocket, cannot be easily replaced without ordering a new one directly from the company. While the part actually looks quite similar to the holsters that were used to carry pagers or cell phones around, it is not possible to easily find a clip that could be used to carry the pump in an electronics store. It was such an insignificant part of the system (or bodily infrastructure) that I nearly forgot that it was even there. That is, until it broke while I was away at a workshop abroad. As with other infrastructures, the infrastructures that support the network of medical devices only become visible upon breakdown (Star, 1999). And, the breakdown in this particular system was inconvenient. The pump did not fit into the pocket of my skinny jeans. Luckily, I had a pair of sweatpants that had the right size pocket but I was embarrassed to wear them to the workshop and, to make matters worse, they were the same pants that I had worn on the plane for 24-hours straight.
As a result of competing proprietary systems, many of the medical devices used to manage diabetes are incompatible and, thus, their ability share data is limited. In addition, individuals are often not able to easily access their own data. For example, at present, neither Medtronic nor Dexcom supports the display of their data on Mac computers. In response to these difficulties, there have been a range of open source projects that aim to improve access to data. Nightscout, which uses the hashtag #wearenotwaiting, is “an open source, DIY project that allows real time access to a Dexcom G4 CGM from web browsers via smartphones, computers, tablets, and the Pebble smartwatch. The goal of the project is to allow remote monitoring of the T1D’s glucose level using existing monitoring devices.”[viii] Specifically, this project allows diabetics using the Dexcom monitoring system to share their blood sugar readings with their family, doctors and caretakers on any Internet-connected device. While Nightscout claims that no programming experiences is needed to use the platform, they offer a series of caveats including the fact that data may go missing, be wrong or delayed and, in addition, you may violate the warranty or break your devices. Given the extremely high cost of these medical devices as well as the limitations on the frequency of their coverage by health insurance, there are many reasons to be wary of these platforms. Furthermore, many open source projects are proclaimed to be easy to use or not require any special knowledge when, in fact, they perpetuate exclusion based on race, gender, class and ability.
Another project, Tidepool focuses on improving the design and compatibility of software so that it is possible to integrate data from different platforms into a single interface on any device.[ix] According to Tidepool’s website, “We believe that you own your data, and that you should decide who, and what other applications, get access to them.” At present, many of Tidepool’s products are still at the clinical trial or proof of concept phase, which means that they are not yet widely available. Diabetik, hailed as the “first diabetes application that not only listens, but also learns from, you” is a platform that incorporates an insulin calculator with data input and data visualization to help people monitor and manage their medication habits.[x] Finally, Open Source Diabetes is a resource that tracks open source software that can be used to control and manage the settings and data.[xi]
While the existence of these kinds of open source initiatives in recent years is an exciting development in itself, none of these projects are focused on the development of an open source insulin pump, glucose monitoring system or glucose meter, which are the main technologies that I have discussed in this article. Furthermore, these projects mimic the larger health and medical industrial complex’ focus on the transmission, measurement, display and visualization of accurate data and the control of the body rather than the everyday rituals (Carey, 1988) and lived experiences of diabetics. While it is certain that many of the developers involved in these projects are diabetics, the problem space that they are designing these projects for is limited by the fact that there are considerable barriers to entry in the health and medical field such as research and development, FDA approval, clinical trials etc. For example, for insulin pumps in the future that could be controlled by a smart phone, the government may require that it be a dedicated phone so that the medical data is not shared on a multi-purpose device. While it is likely that some of these barriers could erode as the price of sensors and other components declines, government regulation and insurance coverage are likely to continue to limit the adoption of open source medical devices for diabetes.
Like open source development, which often embraces alternative value systems with respect to the capitalistic economy, I question the ways in which, in choosing to adopt this particular socio-technical system, I had been conscripted into a capitalist cycle of consumption of the various parts – tubes, needles, sensors, little plastic vials — that make the system function, which must be replaced every three days for the insulin pump and every week for the glucose monitoring system. These parts were shipped to my home like clockwork in three-month supply. There are a few reasons for changing the tubing and insertion spot every three days. First, the small plastic vial of insulin only contains a finite amount, which can become rancid due to its exposure to your body heat. Second, the insertion spot could become infected or aggravated. Yet, I found that instead of changing the tubes every three days, I could easily go for four or five days without needing to use additional supplies with no apparent repercussions. As such, the boxes of supplies began to pile up and the customer service calls began. Similarly, with the glucose monitoring system, I found that rather than acquiesce to its commands to use a new sensor every seven days, I could actually just restart the old sensor and use it for another few days. In fact, it is not the sensor that requires replacement but the adhesive that holds it in place that would eventually get unstuck and peel off after multiple showers and workouts leaving a gummy grey residue that is difficult to remove.
As a result, I overfilled the vials – in turn, slowing down the shipments and reducing the overall cost and environmental impact of the supplies – as a way of hacking the medical system through the creation of an anti-capitalist practice. While perhaps not a radical affront to the health and medical industrial complex (such as opting out of these technologies all together), these small acts of medical disobedience are a way of reclaiming the body (Murphy, 2012) from the temporal logics of capitalism, which dictate the speed at which one must consume in order to generate particular targets of economic growth, albeit in a limited way. At the same time, these practices are also a way of denying the expert knowledge of the doctor in favor of one’s ability to break the rules and experiment with what works. It is this process of discovery and trust in one’s own knowledge that has the potential to cultivate an alternate identity that could be productively used for other types of social change on a larger scale. While open source development communities continue to seek technological solutions to the barriers that diabetics face in accessing and managing their data, these smaller and less radical but sustained changes in daily practices can signify meaningful transformations in one’s identity as a feminist hacker.
Chronic Disease, Disability and Invisible Labor
Hacking relies on many kinds of unpaid and volunteered labor; for example, participation in hackathons and hackerspaces or joining specific communities focused on developing open source software. We know that these socio-technical practices – while often heralded as free and open meritocracies – limit the participation of many in that they are often structured around white male identities, norms and behaviors. Furthermore, they require participation in time and skills that are biased by gender, race, socio-economic status and ability.
New technologies almost always reconfigure, redistribute (and sometimes replace) the work of people, earlier technologies and artifacts (Latour, 1992). In a similar way, managing chronic disease and disability requires a great deal of invisible labor, for which I will never be compensated (except through hopefully living a longer healthier life). Counting – carbohydrates, insulin units, grams, cups, tablespoons, ounces, fiber, tubes, canula, supplies, insertion devices – is one kind of invisible labor that takes a great deal of time and attention on a daily basis. It requires mathematical skills that are distributed across multiple devices: glucose meters, continuous monitoring systems, kitchen scales, operating systems and smart phone applications to name just a few. As such, the human must work in tandem with the non-human devices in order to delegate (Latour, 1992) the various calculations and labor associated with everyday activities such as eating and exercising. In adopting the insulin pump, rather than needles and injections, I was able to offload some of the mathematical calculations to a feature called the “Bolus Wizard.” The wizard can multiply the number of carbohydrates times the amount of insulin needed per carbohydrate and adjust these numbers to accommodate high or low blood sugars. It also requires significant coordination and organization skills – making sure that you have all of the necessary parts of the system when you are traveling, making sure that you have enough of each component to last for the number of days that you will be traveling, making sure that you order and pick up your prescriptions on time. If only one component is missing, the system will fail to function properly. What follows is an example of the ways in which conference travel – and the demands of socializing with colleagues while paying less attention to your own needs and the labor required to maintain the system of medical devices – can be difficult to navigate.
One night, I was invited to dinner with several colleagues. We decided to meet in the lobby 15 minutes later. I rushed up to my room to drop off my things and realized that I had only enough insulin left to eat dinner, which meant that I would need to change the “infusion set” by refilling the vial and reinserting the canula. I grabbed the supplies and took them with me to the restaurant. After dinner, we went straight to a party and I headed to the bathroom. I looked around the bathroom. As usual, there was no sanitary surface on which to put the supplies, just a grimy-looking white porcelain sink. It was then that I realized that I had forgotten the insertion device. I had everything that I needed except for a way to get the tube under my skin. As a result, I didn’t eat anything at the party and cut the night short to get back to the hotel.
In the past, before I transitioned to the pump, street food and cocktail receptions were awkward and problematic, causing me to delay eating until I could excuse myself from a professional conversation or avoid eating completely. In order to determine the correct amount of carbohydrates, I have to carefully select the appropriate plate of food, but once I have selected it, there is often nowhere to put it down. In these situations, I needed to maintain polite conversation with colleagues until I could find an appropriate moment to sneak off somewhere semi-private (a corner or under a desk, for example) in order to give myself an insulin shot with a needle or quickly devour my food. Even foods that can be eaten with one hand can be difficult to manage.
For example, I once stood on the corner of Brick Lane in London, surrounded by colleagues, trying to eat a bagel out of a bag with one hand while attempting to administer a shot with the other. In comparison to this earlier experience, as an information technology, the pump more easily fits into social situations than needles. This is because needles are more obviously recognized as medical technologies that signify disease and disability; they are generally regarded as inappropriate in certain settings and often invoke squeamishness. With respect to invisible labor, the pump can be managed more quickly and thereby significantly reduces the demand on time away from social situations.
Like hacking, living with/being part of a system of devices requires a skill of repairing (Jackson, 2014), maintaining, fixing, adjusting and troubleshooting. For example, when you are too far away from the Dexcom (continuous glucose monitor) or when the transmitter that is attached to the body pops out in the shower, the receiver malfunctions and must be reset. The monitor must be calibrated at least twice a day to remain accurate but, even with regular calibration, it is not uncommon to get strange readings once in a while. Like, off by 60 points strange. This is especially problematic when it repeatedly wakes you up in the middle of the night – with low alarms buzzing every few minutes – despite the fact that the data is actually completely wrong. While the “snooze” feature lessens the intrusion to every few hours, it is not always clear whether the device is taking care of me or whether I am taking care of the device.
From time to time, the doctor might recommend some adjustments, which require toggling through various menus and changing the settings. Sometimes the AAA battery in the pump dies unexpectedly (for example, while rushing to campus to teach with little time to stop at the pharmacy) or the glucose meter or monitor loses their charge. In order to live with chronic disease and disability and manage it with medical devices, one must be prepared for a constant process of breakdown and repair (Rosner and Ames, 2014), both for the body as well as for the technology. Like hacking, the invisible, unpaid and volunteer labor that is needed to manage chronic disease and disability discriminates. It favors those with better educations and higher incomes, which we know is also linked to race, and it is gendered in that it requires a certain kind of care, time, attention and ability. It should be said that the disease itself also discriminates against not only genetics but also race and class in terms of health outcomes and life expectancy. While I may be unfortunate in terms of my genetics (for this is the cause of Type 1 diabetes), I am fortunate to have the education and income (as well as health insurance) that allow me to advocate for myself and navigate the exceedingly complex medical system, which others may lack due to structural inequalities in society.
Towards a Feminist Hacker Ethic
How might we characterize a feminist hacker ethic and how might such an approach shape practices of design? A feminist hacker ethic is necessarily a deeply personal reflective practice about ones own participation in socio-technical systems. Unlike sweeping, revolutionary calls for collaboration, participation and openness based on an assumed meritocracy, a feminist hacker ethic pays specific to inherent inequalities and invisible labor present in these relationships: human/non-human, proprietary/non-proprietary, digital/material, smoothness/friction, abled/disabled, broken/unbroken, quantitative/qualitative, visible/invisible, public/private. Rather than seeking these as binary categories and, in keeping with feminist science and technology studies, a feminist hacker ethic seeks to transcend these categories with specific, nuanced hybrid modes of existence.
My lived experience of the everyday rituals associated with my use of the insulin pump and continuous glucose monitor and the issues that it reveals contribute to the development of a feminist hacker ethic. I am not only a user of this particular medical technology, I am participating in and negotiating the world with it at every moment (Alaimo, 2014). It is constantly shaping my everyday interactions I am shaping it (Bijker et al., 1987, Bogost, 2012). Rather than understanding the world as human-centered, as is common practice in the field of design, a feminist hacker ethic would include the non-human in line with discussions of sustainability and the anthropocene. A feminist hacker ethic would decenter the human, reject the discrete, individual user and make room for a new kind of hybrid stakeholder.
While masculinist practices of hacking and hackathons are often solution-centered, a feminist hacker ethic might privilege reflection in order to raise pressing questions about alternative possible futures. Rather than hacking writ large, feminist hacking might embrace small everyday rituals and actions that seek to transgress and call attention to inequality and introduce alternative sets of values. Design, approached from the perspective of feminist hacking, could pay special attention to these rituals as well as the frictions and breakdowns in order to contribute to the transformation of the medical field around more open practices and non-proprietary systems.
Conclusion
This article argues – through both personal, ethnographic accounts about disease and disability as well as more abstract theory – that a feminist hacker ethic should include disabled identities that have long been overlooked in more masculinist practices of hacking. In reflecting on my own disability and participation in a particular system of medical devices over several years, I have come to take on an identity as a feminist hacker of my own cyborg body. This helps to unpack the abstract notion of the cyborg with a rich, material and embodied description of how the relationships between the digital and the material play out in everyday life. Rather than emphasizing the emancipatory freedoms that can be achieved through hacking, we might also embrace the experiences of literally being trapped in particular kinds of bodies that constrain our activities and limit our ability to participate in certain kinds of activities. Rather than focusing on solutions to problems and human needs in the tradition of human-centered design, a feminist hacker ethic should draw on feminist science and technology studies to emphasize reflection and raising questions about who is included and who is excluded and how to achieve alternative possible futures in the tradition of critical design. Rather than emphasizing the transmission, analysis and storage of data and code as so much techno-centric rhetoric tends to do, a feminist hacker ethic should pay careful attention to the embodied practices and lived experience of everyday routines, habits and rituals through participation in socio-technical systems. Finally, a feminist hacker ethic takes questions of invisible labor and structural inequality into account.
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Endnotes
[i] In order to differentiate between the more ethnographic, personal narratives and the more theoretical writing in the piece, at times, I have used indented, italicized paragraphs when the personal narrative seems to interrupt the flow of the more abstract writing but serves as an explicit example of the argument.
[ii] See http://ctm.parsons.edu/sp-15-hacking-feminism/. Accessed on May 6, 2015.
[iii] See http://www.diabetes.org/living-with-diabetes/know-your-rights/discrimination/employment-discrimination/americans-with-disabilities-act-amendments-act/
[iv] See http://www.oxforddictionaries.com/us/definition/american_english/hack?q=hacking. Accessed on May 6, 2015.
[v] See http://hankypancreas.com. Accessed on May 9, 2015.
[vi] See http://www.npr.org/blogs/health/2014/07/17/332255209/hey-miss-idaho-is-that-an-insulin-pump-on-your-bikini. Accessed on May 9, 2015.
[vii] See http://www.bbc.com/news/health-28810813. Accessed on February 16, 2015.
[viii] See http://www.nightscout.info. Accessed on May 6, 2015.
[ix] See http://tidepool.org/about/pwd/. Accessed on May 6, 2015.
[x] See http://diabetikapp.com. Accessed on May 6, 2015.
[xi]See http://www.opensourcediabetes.org. Accessed on May 6, 2015.