Prosthetics and the Chronically Ill Body: Living with Type 1 Diabetes and an Insulin Pump

Elaine M Laforteza

Abstract


Medical prosthetics, such as insulin pumps, are used to augment the management of chronic illnesses, such as Type 1 diabetes (T1D). I was diagnosed at the age of eight with this illness, but the few years before my diagnosis, I was like a huge sponge that was continually squeezed. My bladder was out of control. I peed while marching in a parade at my kindergarten. I let loose on a stranger’s welcome mat because I couldn’t make it to my toilet. Everyone thought it was just a phase, something I would “grow out of”. After about two years, I hadn’t.

The easiest thing to blame was my excessive intake of water. I would drink an inordinate amount of water at all hours of the day. In the middle of the night, I would wake up and get myself a glass. Or two. Or three. During these times, my friends were in awe that I could walk alone, without fear, in the dark. For a seven-year-old that was tantamount to being a hero. But the only thing on my mind was the refreshing gush of water.

I was a bottomless pit. Any amount of liquid and food that I swallowed seemed to disappear. I rapidly lost weight despite my enormous appetite.  

A few months after my eighth birthday, my Uncle John, a student doctor at the time, suspected I had diabetes. Although I didn’t know what diabetes was, it seemed like it would change my life forever. I wasn’t ready for change. But with great anxiety, I did the urine test. And it changed my life by saving it. If I hadn’t been diagnosed as having Type One diabetes, I would have died.  

With this auto-immune illness, the pancreatic cells which secrete a hormone called insulin (used to regulate blood glucose levels) are incapacitated. Consequently, for those who have T1D, external administration of insulin is needed.

Fig. 1. Injection.

Unlike those with Type 2 diabetes, those with T1D always need insulin injections, regardless of how well they maintain their exercise and dietary regimes. For many, insulin injections are needed. For others, an insulin pump is used to administer insulin in a manner that seeks to mimic a functional, biological pancreas. In this context, an insulin pump is an option used to keep those with T1D alive and can improve how diabetes care proceeds. For instance, in my 28 years of having T1D, I have injected myself with insulin daily to stay alive. In the early years of having the illness, I needed two injections a day. This increased to five insulin injections for two years. The toll this took on my body could be evidenced in scars, bruises and fatty lump deposits from where a syringe had punctured my flesh. However, after transitioning to insulin pump therapy, I only needed to inject myself once every three days, allowing my flesh more time to heal. In this case, insulin pump therapy helped the appearance and health of my skin, while also enabling me to feel more empowered in the face of an incurable illness. 

This article explores insulin pump usage as a means to manage T1D. In regards to this, the article also asks broader questions: What happens when insulin pump technologies fail? What then happens to the human body that is attached to the pump? How can we speak, write and think about re-organised bodies in which, for example, an internal organ’s pancreatic beta cells (those that secrete insulin), are external to the body and battery operated? 

Re-Organising the “Whole” Body

Annemarie Mol and John Law specify, “In western theoretical tradition ‘the body’ is characteristically evoked as the exemplary case of what it is to be whole” (57). Yet, despite this characterisation of a coherent body, the body itself is a “set of tensions” (54). In the context of diabetes, Mol and Law write, “there are tensions between the interests of its various organs. Regulating blood sugar tightly may be good for the arteries, the eyes and the neurons, but since it increases the risk of hypoglycaemia [low blood glucose levels], it is bad for the brain” (54). While one area of the body can benefit, another can simultaneously be compromised. In this context, the body is a site of contradiction and tension that “hangs together” through its incoherence and inconsistency. 

In the case of T1D, while the pancreatic cells which secrete insulin are destroyed, other cells within the body (and within the pancreas itself) continue to function “normally”. However, this continued “normality” brings heath complications. For instance, the pancreas also releases glucagon, which is the sugar found in the body. As a result of the lack of insulin in T1D, glucagon becomes unmanageable and causes blood glucose levels within the body to rise. The “normal” secretion of glucagon, in this case, produces complications to do with high blood sugar (for example, neuron damage and retinopathy). In this case, insulin pump therapy can be used to compensate for the “normal” and “abnormal” functions of the pancreas. The insulin pump thus attempts to bring the body, as much as possible, to a cohesive whole. However, this cohesiveness is arranged in a manner that pushes those with diabetes to rethink how the body is organised. 

According to the Juvenile Diabetes Research Foundation (JDRF), an insulin pump is “a small computerised device that delivers a slow continuous level of rapid acting insulin throughout the day. It can be programmed to give more or less insulin when and if required. The insulin is delivered through a tiny tube (cannula) under the skin that is changed every three days”. It is in Section C in the Australian Government Prostheses list.

Fig. 2. Insulin pump.

The insulin pump is thus a medical prosthetic designed to communicate with the functioning cells within the pancreas, and the rest of the body, in order to keep the body alive. Usually, only one AA or AAA battery is needed to power most insulin pumps. Life hangs on the life span of that battery, and if the pump is on low battery, then one’s body is also in danger of shutting down.

The pump is also located on the outside of the body, with a small cannula being the only thing inserted beneath the skin. On the front of the pump is a visual display designed similarly to the appearance of a mobile phone. The display has a “home page” which shows the time, how much insulin is in the pump, as well as the status of the battery (low battery or not). By clicking onto one of the buttons on the pump, the display shows a menu divided into different sections, such as “bolus” (insulin needed when eating or correcting high blood glucose levels), “suspend” (to stop the pump from administering insulin), “basal” (which regulates the continuous amount of insulin administered 24/7), etc. By scrolling onto a specific category, the pump user can access other sub-categories which enable the user to program the pump. The pump makes visible something that is not usually visible, that is, how much insulin is administered into the body. 

The use of an insulin pump thus reorganises what can and cannot be seen, smelt, touched and heard. With the pump, users connect to insulin in a number of ways that those without diabetes do not. My experiences with the pump enable me to smell the synthetic insulin that courses through my pump’s tubing when it leaks and when I inject myself. With the pump, insulin becomes connected to certain sounds. The pump alarms when the insulin in its reservoir has been depleted. It beeps to signal certain basal rates. Sometimes it beeps for no identifiable reason. Additionally, I relate to the feel of insulin: the puncture of the syringe, the smoothness of the cannula, the tug of the tubing, the weight of the pump itself. 

Pump users also develop a tactile relationship with insulin through pressing the pump buttons to program how their pump delivers their insulin. This tactility becomes a daily sensation as the pump is attached to its user for most of their sleeping and waking hours. The pump is their bedtime companion, it is there during exercise, and it is there during rest. It becomes a daily reminder of the need to augment oneself in terms of one’s T1D. This is a daily reminder that is disseminated through the information the user programs into the pump and what the pump also displays for its user. For instance, before eating a meal, the pump user can input their blood glucose level (through first pricking their fingertip to extract blood and place this blood onto a test-strip which is inserted into a blood glucose machine), and how many grams of carbohydrates they are going to consume.

Fig. 3. Checking blood glucose.

A separate device, called a Continuous Glucose Monitor, can also be used in conjunction with the insulin pump to track blood glucose trends. The pump then calculates how much insulin is needed by assessing the user’s blood glucose level and the amount of carbohydrates they will eat/drink. This information is based on prior data the user and/or the user’s doctor has programmed into the pump to determine how sensitive the user is to insulin. In this context, the pump’s information can be accessed and programmed by its user, but this same data can also be seen and programmed by others (e.g. doctors, nurses, anyone who has access to the pump). This intercorporeality can be dangerous as the pump can be manipulated by people who are not even attached to it. 

Hacking the Insulin Pump and Other Technological limits

Barnaby Jack, a security researcher, “devised an attack that hijacks nearby insulin pumps, enabling him to surreptitiously deliver fatal doses to diabetic patients who rely on them” (Goodin). In this attack, Jack did not have to physically touch the pump or the person attached to it. Instead, Jack designed software and special antenna to communicate with the radio transmitters contained in some insulin pumps. Administering insulin, in this case, is about the communication between technologies, but in such a way that positions the person attached to the pump as a technology themselves. They are packaged in such a way that their body is the site through which radio transmitters, software and antenna can impinge on the life of their body. Consequently, the body, insulin pump technologies and computer software cannot fully function without the other. Thus, while the insulin pump can help with diabetes self-care, it can also put those attached to pumps at risk of being technologically hacked. 

There are also more limits to wearing the pump. In my experience, this has ranged from my pump malfunctioning (it has administered insulin without stopping) to the tubing which connects me to the pump catching on doors and getting tangled in car seat-belts. In regards to the latter, the way in which I walk into and sit in certain spaces has to be reconfigured in order to account for how well (or not well) the insulin pump can be accommodated. Additionally, being twice pregnant while using the insulin pump provided further complications as to how the pump could stay attached to my stomach as it enlarged. My body thus becomes spatialised in terms of how well my pump can fit into certain spaces without being damaged or without my body feeling any pain from it “getting in the way”. 

Additionally, while the pump is attached to its user by a cannula, the pump itself needs to clip onto an article of clothing or be placed in a pocket so that it does not dangle or drop to the ground. The need to attach the pump in order to secure it can be annoying. Anna Presswell, a woman with T1D and an insulin pump has written: “It has been 3 years since I was able to sleep pyjama-less. This may not seem like a big deal, but having tried it once in 42 degree heat in Thailand, almost completely tieing [sic] myself up overnight like a cartoon baddy, being tubing free and able to sleep 'al fresco' again, would be devine [sic]” (1). In Presswell’s case, being attached to the pump means that she is also attached to feelings of discomfort and a lack of freedom. She expresses this sense of being restricted through her desire to be “tubing free”. Presswell’s insulin pump is not the only thing that constricts her, but it is ultimately her T1D that inhibits how she can move, feel, and sleep. In this context, while the pump is dominantly used to augment T1D self-care management, it does not erase the reality of having to live with T1D. The pump is a reminder of the illness which no amount of augmentation can cure. In terms of my experience, the pump is a harsh reminder of having T1D, but it also signifies the biomedical advances in treatment and how privileged I am to be attached to such a device. Being connected to my pump means being connected to my body by having awareness of it in medical terms (hypoglycaemia, hyperglycaemia, etc.) and in terms of feeling (feeling “low” or feeling “high” in terms of blood glucose levels). Such awareness manifests in how I program information into the pump and is complicated through the paradoxical feelings of safety, annoyance, frustration and inhibition I, and others, feel about being attached to an insulin pump. This intimate connection between myself and my pump blurs the boundary between where I begin and where the pump ends. As the pump acts as the medium through which I deal with my body (and live in my body), I experience it as a part of my body. This experience necessitates the question I posed earlier: how then do we contend with re-organised bodies, wherein an internal organ’s pancreatic beta cells (those that secrete insulin), are external to the body and battery operated?

Soma and techné?

The concept of somatechnology may be a useful way to think through this connection between bodies and technologies. This concept of somatechnology emerged through conversations between colleagues in the Department of Critical and Cultural Studies at Macquarie University in 2004 (Pugliese and Stryker 1). These conversations pointed towards an imperative to name the connection between embodied practice and technologies of power, rather than to constitute them as separate and distinct from one another. The term “Somatechnics” was established to meet this need and fused the terms soma (body) and techné (technologies) to illustrate their symbiotic operation. Joseph Pugliese and Susan Stryker attest that the term “Somatechnics” can work as a “shorthand notation for the notion ... that the body is not so much a naturally occurring object that becomes available for representation or cultural interpretation as it is the tangible outcome of historically and culturally specific techniques and modes of embodiment processes” (2). Somatechnics thus point to the dynamic means through which corporealities are constituted through techné that are “continuously engendered in relation to others and to a world” (Sullivan and Murray 3). In this context, everyday belonging to the world becomes constituted through somatechnics, thus illuminating how technologies of power/knowledge become consolidated through embodied practice.  

Stryker argues that in supplanting the “and” in “embodiment and technology”, somatechnics enables a critique of understanding identity as separate from the technologies that constitute bodily becoming (80). Somatechnics, in this case, becomes the means through which bodies can be seen as “inextricably conjoined with the techniques and technologies (technics) through which bodies are formed and transformed” (Stryker 80). As I’ve specified in another publication, 

these include both hard and soft technologies that constitute bodily being in the world … hard technologies are normatively slated as the products that are separate from the human body, such as computers and other gadgets. Conversely, soft technologies are normatively considered as techniques that constitute the norms people maintain in order to manage themselves and others. (Laforteza 28)

The Greek etymological root of technology, techné, signals both types of technology, phrasing particular importance on the conception of soft technologies. David Rooney specifies that techné “means belonging to the arts, crafts or skill, and is also related to tactics. Therefore, to the ancients, technology was more than ‘gadgets’, it was also … to do with skills, know-how, and the art of doing things; [techné thus comprises] ... knowledge, actions and ‘gadgets’” (3). Rooney further attests that comprehending technologies as an “indissoluble” partnership between the hard and soft provides a comprehensive account of how social orders become technologised. In doing this, Rooney uses Michel Foucault’s conception of technologies (of production, sign-systems, power, and the self) to go beyond a hard/soft and technological/social boundary. 

The concept of somatechnology goes even further by specifying that social networks and their norms are technologised, and vice-versa. Moreover, the concept of somatechnics argues that this technologisation of society cannot exist outside the body. Here, the normative idea of hard technologies as outside the body is challenged. In context to users of insulin pumps, this enmeshment of soma and techné is brought to the fore through the pump standing in for certain pancreatic cells, to the point that it enables the body to live and “function” as a human body. Simultaneously, the pump is redundant without the input of human agency and the ways in which the user of the pump programs the pump to work. In light of this, the pump “re-organises” the body in such a way that already speaks to the inherent incoherence and inconsistency of the body. Using the pump also engenders the cultivation of norms, roles, rules and assumptions that constitute pump users as specific medicalised bodily beings. Operating the pump thus makes visible the body as technologised and technologies as bodily. The body that is attached to an insulin pump cannot simply be named and understood as soma, but as somatechnology.

Conclusion

In terms of having T1D and an insulin pump, the concept of somatechnology can be used as a theoretical framework to investigate the discourses of health and “normality” that inform how users of insulin pumps deal with their diabetes and their bodies. Discourses of health and “normality” involve a preoccupation with augmentation to either fix, cure, treat, and/or maintain the “healthy” and “normal” body. Insulin pumps act in this capacity to augment diabetes care by transcending the limits of the illness, but in such a way that can make users fully aware of such limits. This is because the insulin pump is a prosthetic developed to constitute bodies with T1D as primed for life, not as a body built to decay and die because of its illness. In this case, the insulin pump as a prosthetic is premised on the hope of improving and sustaining a life that is always-already involved with the threat and expectation of diabetes related complications and death. At stake in using a prosthetic device to ‘manage’ the body is the push to understand and make knowable a body that is unknowable, un-mappable, and unpredictable. 

References

Goodin, Dan. “Insulin Pump Hack Delivers Fatal Dosage over the Air.” The Register, 27 Oct. 2011. 5 Aug. 2019 ‹http://www.theregister.co.uk/2011/10/27/fatal_insulin_pump_attack/›.

JDRF. “Insulin Pump Program.” JDRF: Improving Lives, Curing Type 1 Diabetes (2019). 9 Apr. 2019 ‹https://www.jdrf.org.au/type-1-diabetes/insulin-pump-program-faq›.

Laforteza, Elaine Marie Carbonell. The Somatechnics of Whiteness and Race: Colonialism and Mestiza Privilege. Surrey: Ashgate, 2015.

Mol, Annemarie, and John Law. “Embodied Action, Enacted Bodies. The Example of Hypoglycaemia.” Body & Society 10.2–3 (2004): 43–62.

Presswell, Anna. Insulin Independent: Negotiating the Sometimes Rocky Road That Is Type 1 Diabetes Together (7 Jan. 2013). 19 July 2014 ‹http://insulinindependent.blogspot.com.au/2013/01/pumps-selling-points-and-counting-down.html›. 

Pugliese, Joseph, and Susan Stryker. “Introduction: The Somatechnics of Race and Whiteness.” Social Semiotics – Special Issue: Somatechnics of Race and Whiteness 19.1 (2009): 1–8. 

Rooney, David. A Contextualising, Socio-Technical Definition of Technology: Learning from Ancient Greece and Foucault. 1996. 10 July 2012.

Stryker, Susan. “We Who Are Sexy: Christine Jorgensen‘s Transsexual Whiteness in the Postcolonial Philippines.” Social Semiotics – Special Issue: Somatechnics of Race and Whiteness 19.1 (2009): 79–91.

Sullivan, Nikki, and Samantha Murray. “Introduction.” Somatechnics: Queering the Technologisation of Bodies. Eds. Nikki Sullivan and Samantha Murray. England: Ashgate Publishing, 2009. 1–12.


Keywords


type 1 diabetes, insulin pump, auto-immune condition



Copyright (c) 2019 Elaine M Laforteza

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