A Multisensory Literacy Approach to Biomedical Healthcare Technologies: Aural, Tactile, and Visual Layered Health Literacies
by Kristin Marie Bivens, Lora Arduser, Candice A. Welhausen, & Michael J. Faris
Embodied Health Literacies: I Can Hack That
Lora Arduser 1
Danica, a leading voice in the online diabetes community, was diagnosed with type 1 diabetes (T1D) when she was 12 years old.
T1D, which accounts for about 10% of the people in the United States with diabetes,
is a chronic health condition in which the pancreas produces no insulin, the hormone used to convert sugar (glucose) to produce energy. Because people with T1D do not produce insulin, they need to self-administer a synthetic version of the hormone on a daily basis.
The technologies Danica uses—a blood glucose monitor, an insulin pump, and a continuous glucose monitor (CGM) to deliver her insulin and to monitor her blood sugar—are commonly used by people with T1D.2 As a person with T1D, part of Danica's daily routine involves checking her blood sugar level with a blood glucose meter, changing and using an insulin pump infusion set, and changing and using a continuous blood glucose monitoring system (CGM). People with T1D use these meters 10 or more times a day to test the level of sugar in their bloodstream (Hart, 2010). Blood glucose monitors show numbers that are used to make decisions about how much insulin to take to cover a meal they are going to eat and make decisions about exercise patterns. Insulin pumps are computerized devices used to deliver insulin to a person. The pump, which is about the size of a smartphone, delivers insulin through a small tube that connects the pump to an infusion set, a plastic device with a small needle. The infusion set is worn on the body, typically around the stomach area. The entire system is designed to mimic the way the human pancreas works. It delivers a continuous small dose of insulin (basal rate). It is also used to deliver variable amounts of insulin when a meal is eaten (bolus) (Aleppo, 2015).
CGMs are connected to a person's body in a similar fashion: a sensor attached to the skin with adhesive has a small needle which gets inserted under the skin to transmit glucose level readings from interstitial fluid. Through this connection, a sensor delivers blood sugar numbers to a receiver every five minutes. A person using this technology can view these numbers in a number of ways: on the receiver itself, on a smartphone, or on a smartwatch.
The estimated thousands of people using pumps (Chait, 2014) constantly adjust both their bodies and the technologies they use to trick their bodies into working "normally." These adjustments follow the advice and direction of healthcare providers and device manufacturers. When testing blood with a glucose meter, for example, a person is directed to wash her hands and use a new lancet. Certified diabetes educators (CDEs) give patients algorithms for setting the rate of their insulin blood drip (the continuous dosage of insulin the pump delivers throughout the day) and are taught how to make adjustments. These adjustments include "dosing" for a particular number of grams of carbohydrates to keep insulin circulating in the blood stream and for carbohydrates being digested in homeostasis.
These adjustments can be seen as a form of tactical technical communication (Kimball, 2006, 2017). Following Michel de Certeau (1984), Kimball (2006) suggested "tactics" as a way to talk about extra-institutional technical communication. Both Drew Holladay (2017) and Hannah Bellwoar (2012) have directly taken this concept into research on health texts. Bellwoar (2012) specifically tied this to notions of literacy, noting,
In studies of medical discourse, the traditional cultural frame considers agency to be in the production of texts and the interpretation of information, tasks typically associated with medical professionals. Patients in this frame are not seen as participants or makers of knowledge in the production of health care texts. (p. 325)
Bellwoar challenged these assumptions through an analysis of how people "engage in thinking about their health" (p. 325), which she called patients' "literate activity"—that is, what they do with health-related texts—and it includes patients' self-directed trajectories of reading, writing, talking, and acting as they grapple with technical health care questions. As such, her term "literate activity" prioritizes texts and reading and writing in ways that are situated but not multisensorial.
The irrelevance of bodies in the past arises not only from its absence in definitions of health literacy but also from the role of compliance in diabetes healthcare delivery. Compliance, following a doctor's orders, is deemed an important part of the self management of any chronic disease because self management by definition takes place outside of clinical or medical encounters—encounters between a patient and a healthcare provider. In the daily practices of diabetes self management, a patient's scientific expertise is disembodied from the medical expert. In other words, expertise (a form of literacy) is often acquired when the provider is absent. Disembodying healthcare providers in this way sets the stage for blinding us to patient bodies, which obscures the importance of lived experience, and personal and cultural knowledge in health literacy models. Take the Centers for Disease Control and Prevention's (2015) definition as an example: "The Patient Protection and Affordable Care Act of 2010, Title V, defines health literacy as the degree to which an individual has the capacity to obtain, communicate, process, and understand basic health information and services to make appropriate health decisions" (para. 1). Obtaining, communicating, processing and understanding seem to function in a framework that splits mind and body because these are cognitive processes. So the space of literacy is defined as being in the head as opposed to the body.
The tactical adjustments (i.e., hacks) I describe here that T1Ds make "outside" the prescribed rules of compliance, however, make bodies relevant in acquiring and communicating knowledge. In their attempts to "create order from disorder" (Martins, 2009, p. 118), T1Ds act as lay scientists with regard to their own biology. As such, the complex relationships between T1Ds' bodies and medical technologies gives us fertile ground for re-embodying health literacy through the notion of tactility.
The concepts of tactility and embodiment tend to focus on the surfaces of bodies and the concept of touch. In the multimodal anatomy lab, for example, T. Kenny Fountain (2014) described students' experiences as tactile: cadavers are opened with tools, students handle various anatomy as a part of their learning experiences. Shannon Walters (2014) also argued for understanding touch as a rhetorical art that is vital instrument for creating meaning, connection, and partial identification, and that a rhetoric of touch allows for a richer understanding of the communication processes of rhetors who use embodied strategies of communication.
However, as Fountain (2014) has also shown, these concepts extend beyond surfaces. Fountain illustrated this with an arresting example of his own experience in the anatomy lab. In the example, he told of reaching into a cadaver with his gloved hand for a nerve. As he noted, another nerve, the one in his own body, transmits information about both bodies to his brain.
The idea of touch below the surface of the skin resonates with the tactility of diabetes wearable technologies, technologies that sit on the surface of the skin but move beneath it as well. As an embodied form of health literacy, tactility offers access to metaphors that can help shift a largely static and binary definition of healthy literacy to one that is at once dynamic and embodied.
Strata of Embodied Health Literacy
To begin this re-definitional work, I start with Kelli Cargile Cook's (2002) concept of layered literacies but suggest that thinking of layers as stratigraphy might lend us a better guiding metaphor for building tactility into the definition of health literacy. Presenting literacies as stratigraphy rather than layers does two things. First, such spatial representations of literacies can be more successful at drawing attention to the fact that literacies are embodied. Second, it allows for literacies to be thought of in a different kind of relationship to one another. Cargile Cook's layers of basic, rhetorical, social, technological, ethical, and critical literacies for technical communicators and Don Nutbeam's (2000) schematic of functional, interactive, and critical aspects of health literacy suggest hierarchies. We begin with basic or functional principles and move on to more complex forms of literacy, building on the basic level as a foundation.
Ideas associated with stratigraphy have been generative in disability studies (Quinlan & Bates, 2014) and feminist theory (Currier, 2003; Grosz, 1994). This work largely relies on Gilles Deleuze and Félix Guattari's (1987) concept of assemblage, which offers a way of thinking about bodies and technologies that solves the binary tensions in cyborg theory (Kirby, 1997). According to Grosz (1994), the body as assemblage presents
an altogether different way of understanding the body in its connections with other bodies, both human and non-human, animate and inanimate, linking organs and biological processes to material objects and social practices while refusing to subordinate the body to a unit of a homogeneity of the kind provided by the bodies' subordination to consciousness or to biological organizations. (p. 165)
Such assemblage are constellations of elements or parts, but they are not unified or stable nor are they grounded on a prior unity (Currier, 2003). Stratigraphy, a concept related to assemblages in the social sciences, refers to studies of environmental change and human activity which get recorded in the sedimentary rock record. Geologists and archaeologists use the principles of stratigraphy to identify assemblages or associations between artifacts below the surface of the earth. These principles do pay attention to chronological order, but context is just as important. If an archaeologist is looking for prehistoric artifacts in a systematic survey of a cornfield, for example, the prehistoric tool the archaeologist finds on the surface cannot be assumed as being from the present time period. The human activity of plowing that field (the context) has an impact on ordering.
To account for reversals in a model of embodied health literacies, the metaphor of stratigraphy has the benefit of being a dynamic concept. Even though the guiding assumption of the principle of superposition is that the deeper underground something is, the older it is geologically, other natural and human processes are not static.
Say, for example, that an archaeologist is investigating a prehistoric site in the United States. As she digs, she might find prehistoric human remains and pits. Rodents also create burrows that can resemble human-made activity. And humans can change stratigraphic positions through activities of development—putting in a new mall or refabricating interstates. These activities may connect strata, such as numbers 2 and 3 in the above image. They can also cause physical "reversals" that might be apparent in the archaeological record, jumbling materials from strata 1, 4, 9, and 10, for example. All these activities make it more difficult to rely on the assumption of "deeper=older."
Using this metaphor of stratigraphy for the process of developing health literacies brings attention to the fact that these processes, like the physical ones just described, cannot only rely on the assumption of superposition.
In the case of embodied health literacy there are two main layers of stratigraphy. The first involves literacies that impact how an individual interfaces with healthcare technology and bodies, what Cargile Cook (2002) referred to as basic literacy and technological literacy, in the form of bodyhacking, and the related data/information literacy. The second layer shifts from concerns about how a person interfaces with technologies in relation to individual bodies and internal physiological processes to how diabetics interface with the world around them. These literacies include Cargile Cook's social literacy as well as advocacy as a form of action. Critical and ethical literacies run through both strata.
Literacies for Interfacing with Bodies
It is true that people just diagnosed with T1D need to develop basic or foundational knowledge about carbohydrates and testing their blood. In fact, the American Diabetes Association's (2016) Standards of Medical Care in Diabetes defined self-management education as a cornerstone for all diabetes care. But much of this training has been developed to address the larger population of people with type 2 diabetes (T2D) and focuses on education at the time of diagnosis. As an example, Medicare Part B "may cover" up to 10 hours of initial diabetes self management training (Centers for Medicare & Medicaid Services, n.d., para. 1). People with diabetes on Medicare may also qualify for up to two hours of follow-up training in a calendar year after their initial training. Similarly, self-management programs have been developed in pharmacies and through partnerships between insurance companies, and the YMCA for people with poorly controlled T2D.
Therefore, a so-called functional literacy is not a static building block on which all other knowledge rests because bodies change, diseases change, and technologies change. Practices of body hacking address these changes. Body hacking, when thought of as mêtis (Arduser, 2017) can be seen as a literacy in and of itself. At once flexible and practical, mêtis is "full of reversals and thus demanding resourcefulness" (Dolmage, 2009, p. 6). It can deal with "whatever comes up" (Detienne & Vernant, 1978, p. 22). As a literacy and a practice, bodyhacking enables different, less hierarchal relationships between layered literacies of health much as the stratigraphy model does.
In some ways body hacks are like other technological workarounds. Many of these hacks, like the Dexcom in a Glass, are "finding what works for you," a phrase so many people with diabetes use when talking about advice they would give another diabetic. In 2013, for example, blogger Kerri Sparling was invited to present at the International Diabetes Federation World Congress, an umbrella organization of over 230 national diabetes associations in 170 countries and territories that represents the interests of people with diabetes and those at risk (IDF, 2015). One of the topics she talked about was the Dexcom in a Glass hack. She and other people who use Dexcom's continuous blood glucose monitoring system place the meter in a glass by their bedside at night. The glass makes the meter's alarms for low and high blood sugars easier for users to hear while sleeping, which means their blood sugar is less likely to go to levels that could result in a coma (Sparling, 2011; for a summary of her presentation at IDF, see Sparling, 2013).
People find what works for them with other hacks to CGMs as well. CGM manufacturers include specific directions about where and how to place the CGM on the body and how long a sensor should be worn before replacing it. As part of the instructions that come with the sensors, a warning is included: "Place the sensor horizontally, NOT vertically, on your skin."
Danica showed this CGM hack in one of her video blogs (vlogs) on her YouTube channel. In Arm Dexcom G4 Sensor Insertion Tutorial! (DiabeticDanica, 2013), Danica noted that Dexcom, the manufacturer of her CGM, recommends only wearing them on the abdomen. She, however, wears hers on her hip and arm as well.
Conversations in online patient community discussion forums also regularly discuss extending the recommended usage time for the sensors for CGMs and insulin pump infusion sets (see, e.g., Sandy23, 2014). A related hack involves using KT TAPE—a tape designed for common sports injuries to keep the CGM in place as its adhesive becomes less functional.
Jay Radcliffe, a security researcher, performed a more stunning hack to his insulin pump in 2011 after he discovered a software bug in his insulin pump that could allow hackers to take remote control of the device. Radcliffe demonstrated the hack to the crowd at the Black Hat conference in Las Vegas. By sending commands to his device from a short distance, he was able to disable it, suspending insulin delivery, or give commands to deliver too much insulin—both risky situations (blackhattish, 2012).
Along with physically plugging in to technology that replaces a malfunctioning biological process, people with diabetes can use the pump as a vehicle to alter identities. A typical way for type 1 diabetics to alter their identities through technology is for pumpers to shed sedentary weekday/workplace identities and become weekend sports warriors by decreasing their insulin dose. A less positive example is that of teenage girl pumpers skipping insulin doses to lose weight and create skinnier selves. As another example, Miss Idaho 2014, Sierra Sandison, shifted from beauty contest contestant to diabetes advocate when she made the decision to visibly wear her pump in the swimsuit competition of the Miss America pageant (Tucker, 2014).
Health Literacies for Interfacing with the World
The individual biohacking actions between bodies and technologies that I have described in this section have implications with how a T1D interfaces with the world, which also influences the literacies associated with these interactions.
When Sandison visibly wore her pump in the Miss Idaho pageant, for example, she inspired a popular Twitter hashtag: #showmeyourpump. The hashtag not only draws attention to what is often an invisible disability but advocates for taking pride in being diabetic by making the disease’s technologies and self-care practices visible. In doing so, diabetics "come out of the bathroom." This phrase refers to a typical practice of people with diabetes who use insulin. In order to avoid making other people uncomfortable, diabetics using insulin will often go to the restroom to dose when in a public place.3
A similar hashtag social movement is that of #WeAreNotWaiting. The rallying cry refers to the frustration of people in the diabetic community when it comes to the development and release of diabetes technology. The tagline was the result of a group discussion at the first DiabetesMine D-Data ExChange event in November 2013 at Stanford University, and it is related to the work of people at the project called Nightscout (Tenderich, 2014). Nightscout is an off-label way to monitor someone else's blood sugar from another location. Jason Adams, a software developer, was part of the original team. He was interested in this innovation because he wanted to be able to monitor his 8-year-old daughter's blood-sugar levels, and he was tired of waiting for Dexcom, the company that manufacturers the CGM his daughter wears, to release the technology (Linebaugh, 2014). Dexcom has since released its technology for sharing data by the Internet, but NightScout still has many users.
These acts of advocacy and innovation require the types of literacy that straddle strata 1 and 2—critical and ethical literacies. The movement between these strata and the overlapping nature of some literacies mimic the physical sites of health literacy, which vacillate between the home and clinic. In the home, people with diabetes become experts in their medical care and through these activities exercise embodied health literacy. In the clinical encounter, however, charts with blood sugar numbers are more "scrutinized and valued" (Martins, 2009, p. 118) than the patient's body, and information (and therefore literacy) becomes once again disembodied. Tactile literacy switches the work of being watched or surveilled to the work of troubleshooting through body hacking.
Such material practices are necessary as a part of health literacy definitions for two reasons. First, expert (i.e., chronic) patients are a growing segment of the population. According to the CDC (2016b), approximately 117 million Americans have one or more chronic conditions. In 2009 Lancet reported that by 2020, this number will grow to an estimated 157 million, with 81 million having multiple conditions ("Tackling the Burden," 2009). Second, healthcare is increasingly intertwined with technology for a growing number of people. Some of these technologies are as ubiquitous as the electronic medical records, fitness apps, and online health searches using Google and other search engines. Others are more complex and individual, such as insulin pumps, hearing aids, and home dialysis machines.
1 This project was partially funded by the University of Cincinnati's Taft Research Center.
2 A blood glucose monitor allows people to manually check blood sugar levels several times a day; a CGM automatically gives a person readings every five minutes.
3 In June 2016 a restaurant owner was in the news for posting a sign in his restaurant asking people with diabetes to go to the restroom to inject their insulin. Despite a subsequent apology, he received a tremendous backlash from the online diabetes community (Idlebrook, 2016).