The senses and digital health

I have edited a special issue for the journal Digital Health on the theme of ‘The senses and digital health: sociocultural perspectives’.  Part of the editorial I have just finished for the special issue is excerpted below. The whole preprint of my editorial is here: Preprint of editorial for special issue on senses and digital health

A few days before I began writing this editorial, I ran a discussion group with some people who were attending an outpatient cardiovascular rehabilitation program at a hospital in my home city, Canberra. The purpose of the discussion was to discover what sources of information and support people who had recently received hospital treatment for a serious heart condition were using and found valuable. As one of my major areas of research is the social and cultural dimensions of digital health (see, for example, my book Digital Health), I was particularly interested in the digital media and devices they may be using.

I began with general questions about what sources of information the participants had found useful in learning about their heart condition and rehabilitation following their diagnosis and surgery at this hospital. The group members told me that the hospital cardiac rehabilitation sessions were very important to them, not only as a way to learn about recovery and preventive actions they could take to improve their coronary health, but also as an opportunity to interact with other people who had gone through similar experiences. They explained that, together with the sessions they attended as part of this program, the print material (pamphlets and a book) about cardiac rehabilitation that had been given to them by the hospital had been the major contributors to learning about their disease and recovery. They commented that they had been able to discuss aspects of these materials during face-to-face encounters with healthcare staff if they needed to ask questions or receive clarification on any of the information within. Some people had also attended pre-admission group information sessions after their cardiac condition had been diagnosed, which their partner was also encouraged to attend. Others had had no opportunity for this kind of preparation, as they had experienced a sudden heart attack and found themselves in the emergency department receiving medical attention with little warning.

A dominant theme that emerged from the participants’ accounts was their desire to share insights from their experiences about the mysterious and unexpected nature of heart disease or heart failure. Several participants recounted their stories of how they had been diagnosed with heart disease or suffered a heart attack without realising that there was any problem with their hearts. For these people, the best way to share the insights they had gained from their own experiences was to tell their friends and family about it, as a form of warning. For some, friends or family members who had already experienced a heart condition were a source of information. They had listened to these other people recount their experiences and learnt about the symptoms and treatment.

When I moved onto the topic of digital technologies, it was clear that these were not important to most people in this rehabilitation program. Only about half of them even owned a smartphone. Several people said that they used at-home blood pressure and pulse rate monitoring devices as a way of tracking their heart health. They had purchased these from pharmacies, on their own initiative, rather than being encouraged to do so by their doctors. They printed out the data from a spreadsheet they maintained, or recorded their details with pen-and-paper, and showed this information to their doctors on follow-up appointments.

None of the participants used a digital device like a smartphone app or wearable device for monitoring their blood pressure. A small number did use these devices for tracking other body metrics, such physical activity levels. They were all in the younger age group (aged below 60). In terms of online sources of information, very few of the group had searched prior to their diagnosis for information related to any symptoms they may have experienced. About a third of the participants did go online after their diagnosis or surgery to seek information. However, none of the participants had ever used a patient support online forum or social media community for their health condition. When asked what they will do once they have finished the six weeks of the cardiac rehabilitation program, some mentioned that they would join one of their local gyms to continue their exercise routines. None was interested in joining an online patient support group at that point.

Reflecting on this focus group discussion as I write this editorial has highlighted some of the key issues I envisaged the issue as exploring. While my initial focus was digital health, these responses proved enlightening to me in their very de-emphasis and backgrounding of the digital. They provide a compelling counter to the techno-utopian visions that are often put forward by advocates of digital health technologies and the ideal of the ’digitally engaged patient’ that has become so dominant in the technological, medical and public health literature.

Profound affective and sensory aspects of living as a cardiac disease survivor were expressed in the participants’ accounts. For them, a key issue in how information about cardiovascular disease is communicated and shared was finding some way to let others know about the diverse symptoms that are not always recognised as signalling a heart problem. They reflected that they themselves in many cases hadn’t recognised the symptoms when they were living through the experience. The discussion group provided a forum for people to tell stories of hidden illness striking suddenly and catastrophically. They emphasised the uncertainty of not knowing what the physical sensations they were experiencing were, and whether they should be concerned and seek immediate medical attention.

Listening to their heart disease stories, and reading over them later as transcripts, I was reminded of Arthur Frank’s influential book The Wounded Storyteller, in which he discusses how people’s illness and physical suffering are expressed as narratives. Frank describes the wounded storyteller as ‘anyone who has suffered and lived to tell the tale … a guide and companion, a truth teller and trickster. She or he is a fragile human body and a witness to what endures’.

In the face of this uncertainty and experiencing life-threatening illness, major surgery, and then long recovery, the medical care and continuing support provided to the patients were vital to their sense of security and confidence in the integrity of their bodies. The participants’ positive feelings towards the rehabilitation program and what it offered them were obvious in their accounts. While the space and people were unfamiliar to me, I could perceive that the group members felt at ease coming to this space to which they were now habituated through their twice-weekly visits, and with staff who knew them and spoke to them kindly, and the other cardiac disease survivors in the group they had come to know. Compared with the strength of feeling about the face-to-face encounters they had in this program, the support and information offered by digital technologies were very much in the background. They were simply not important in these people’s everyday experiences of recovering from and managing their cardiac conditions.

These people’s experiences as they recounted them with filled with sensation and affect: the intense and sudden pain they experienced when having a heart attack, the surprise they felt at being diagnosed with a heart condition, the relief of having survived a serious medical problem and, in many cases, major surgery, and the comfort and reassurance of being supported during their rehabilitation by hospital staff and other group members. These were people whose everyday routines and assumptions about their bodies had been thrown into disarray. They wanted to be able to convey these sensory and affective experiences to me, and to others to warn them and instruct them on how to interpret their bodily signs and symptoms.

For this group, comprised of people who in many cases were not highly digitally literate or regular users of digital devices, digital technologies were on the margins of their care and support, or simply non-existent in their lifeworlds. It was the health professionals at the hospital, the other group members, the space provided for them to which they had become accustomed, and the print material given to them at the hospital that were the important and trusted elements in lifeworlds which they were moving and recovering their bodily integrity and confidence. The findings from the discussion group raise further questions about what further support should be offered to people once the six weeks of the rehabilitation program are over, and whether this should be mediated via digital technologies or provided in other ways.

Seams in the cyborg

Another excerpt from my forthcoming book Digital Sociology (due to be released on 12 November 2014). From chapter 8: ‘The Digitised Body/Self’.

Such is the extent of our intimate relations with digital technologies that we often respond emotionally to the devices themselves and to the content contained within or created by these devices. The design of digital devices and software interfaces is highly important to users’ responses to them. Devices such as iPhones are often described in highly affective and aestheticised terms: as beautiful playthings, glossy and shiny objects of desire, even as edible or delicious. Advertising for the iPhone and other Apple devices often focus on inspiring child-like wonder at their beauty and magical capabilities (Cannon and Barker 2012).

Affective responses to material objects are integral to their biographical meaning to their owners and their participation in intimate relationships. Writers on material culture and affect have noted the entangling of bodies/selves with physical objects and how artefacts act as extensions or prostheses of the body/self, becoming markers of personhood. Objects become invested with sentimental value by virtue of their association with specific people and places, and thus move from anonymous, mass-produced items to biographically-inscribed artefacts that bear with them personal meanings. Over use and with time, such initially anonymised objects become personalised prosthetics of the self, their purely functional status and monetary value replaced by more personal and sentimental value (Miller 2008, Turkle 2007).

… Bell and Dourish (2011) refer to the mythologies and the mess of ubiquitous computing technologies. By myths they mean the cultural stories, values and meanings that are drawn upon to make sense and represent these technologies. The types of myths surrounding new digital technologies tend to focus on their very novelty, their apparent divergence from what has come before them and their ability to provide solutions to problems. The ‘mess’ of digital technologies inheres in the challenges to myths that suggest that they are infallible, offer an ideal solution to a problem: the ‘practical reality’ of their everyday use (Bell & Dourish, 2011, p. 4). When digital technologies operate as we expect them to, they feel as they are inextricably part of our bodies and selves. Inevitably, however, there are moments when we become aware of our dependence on technologies, or find them annoying or difficult to use, or lose interest in them. Technologies break down, fail to work as expected; infrastructure and government regulations may not support them adequately; users may become bored with using them or their bodies may rebel and develop over-use symptoms. There may be resistances, personal or organised, to their use, and contestations over their meanings and value (Lupton, 1995; Miller & Horst, 2012).

Freund (2004, p. 273) uses the term ‘technological habitus’ to describe the ‘internalised control’ and kinds of consciousness required of individuals to function in technological environments such as those currently offered in contemporary western societies. The human/machine entity, he argues, is not seamless: rather there are disjunctions – or, as he puts it, ‘seams in the cyborg’ – where fleshly body and machine do not intermesh smoothly, and discomfort, stress or disempowerment may result. Sleep patterns, increasing work and commuting time and a decrease in leisure time, for example, can be disrupted by the use of technologies, causing illness, stress and fatigue. Our bodies may begin to alert us that these objects are material in the ways that they affect our embodiment: through eye-strain, hand, neck or back pain or headaches from using the devices too much (Lupton, 1995).

People may feel overwhelmed by the sheer mass of data conveyed by their digital devices and the need to keep up with social network updates. Analyses of social media platforms such as Facebook are beginning to appear that suggest that users may simultaneously recognise their dependence upon social media to maintain their social network but may also resent this dependence and the time that is taken up in engaging with them, even fearing that they may be ‘addicted’ to their use (Davis, 2012). Users may also feel ‘invaded’ by the sheer overload of data that may be generated by membership of social networking sites and the difficulty of switching off mobile devices and taking time out from using them (boyd, 2008).

Technology developers are constantly working on ways to incorporate digital devices into embodiment and everyday life, to render them ever less obtrusive and ever more part of our bodies and selves. As the technical lead and manager of the Google Glass (a wearable device that is worn on the face like spectacles) project contends, ‘bringing technology and computing closer to the body can actually improve communication and attention – allowing technology to get further out of the way’ (Starner, 2013, p. no page numbers given, emphasis in the original). He asserts that by rendering these devices smaller and more easily worn on the body, they recede further into the background rather than dominating users’ attention (as is so overtly the case with the current popular smartphone and tablet computers). Despite these efforts, Glass wearers have been subjected to constant attention from others that is often negative and based on the presumption that the device is too obvious, unstylish and unattractive, or that the people who wear them are wealthy computer nerds who do not respect the privacy of others. They have reported many incidences of angry responses from others when wearing Glass in public, even to the point of people ripping the device off their faces or asking them to leave a venue (Gross, 2014). The design of digital devices, therefore, may incite emotional responses not only in the users themselves but also in onlookers.

Some people find wearable self-tracking devices not fashionable enough, or not water-proof enough, or too clunky or heavy, or not comfortable enough to wear, or find that they get destroyed in the washing machine when the user forgets to remove them from their clothing. One designer (Darmour, 2013) has argued that if these technologies remain too obvious, ‘bolting’ these devices to our bodies will ‘distract, disrupt, and ultimately disengage us from others, ultimately degrading our human experience’. She asserts that instead these objects need to be designed more carefully so that they may be integrated into the ‘fabric of our lives’. Her suggested ways of doing this include making them look more beautiful, like jewellery (broaches, necklaces, bracelets, rings), incorporating them into fashionable garments, making them peripheral and making them meaningful: using colours or vibrations rather than numbers to display data readings from these devices.

References

Bell, G., & Dourish, P. (2011). Divining a Digital Future: Mess and Mythology in Ubiquitous Computing. Cambridge, Mass: MIT Press.

Cannon, K., & Barker, J. (2012). Hard candy. In P. Snickars & P. Vonderau (Eds.), Moving Data: The iPhone and the Future of Medicine (pp. 73-88). New York: Columbia University Press.

boyd, d. (2008). Facebook’s privacy trainwreck: exposure, invasion, and social convergence. Convergence, 14(1), 13-20.

Darmour, J. (2013). 3 ways to make wearable tech actually wearable. Co.Design. Retrieved from http://www.fastcodesign.com/1672107/3-ways-to-make-wearable-tech-actually-wearable

Davis, J. (2012). Social media and experiential ambivalence. Future Internet, 4(4), 955-970.

Freund, P. (2004). Civilised bodies redux: seams in the cyborg. Social Theory & Health, 2(3), 273-289.

Gross, A. (2014). What’s the problem with Google Glass? Retrieved from http://www.newyorker.com/online/blogs/currency/2014/03/whats-the-problem-with-google-glass.html

Lupton, D. (1995). The embodied computer/user. Body & Society, 1(3-4), 97-112.

Miller, D. (2008). The Comfort of Things. Cambridge: Polity Press.

Miller, D., & Horst, H. (2012). The digital and the human: a prospectus for digital anthropology. In H. Horst & D. Miller (Eds.), Digital Anthropology (pp. 3-35). London: Berg.

Starner, T. (2013). Google glass lead: how wearing tech on our bodies actually helps it get out of our way. Wired. Retrieved from http://www.wired.com/opinion/2013/12/the-paradox-of-wearables-close-to-your-body-but-keeping-tech-far-away/

Turkle, S. (2007). Evocative Objects: Things We Think With. Cambridge, Mass: Massachusetts Institute of Technology.

Moving attachments: our emotional relationship with mobile digital media technologies

I recently read an article by Dave Beer in which he discussed the current lack of academic research and theorising about the emotional attachments users of the new mobile media develop with their devices. I agree that there is rather a dearth of writing about the ways in which we use and relate to new mobile media. I was frustrated, for example, to read a new edited book recently entitled Digital Cultures and the Politics of Emotion that focused on the topic of affect and digital technologies and to find that none of the contributions dealt with the affective dimensions of the technologies themselves. The focus, instead, was on the content produced via the technologies (their texts and images) and how affective states were reproduced and circulated online: for example, racist, violent and misogynistic material shared via social networks. While this book certainly provided interesting material on ‘digital structures of feeling’ there was little discussion of the ways in which digital technologies themselves as material objects and their embodied use are part of these structures.

This is a subject in which I have long had an interest. I have written extensively both on the topic of emotions, selfhood and embodiment (published in my book The Emotional Self ) and on the sociology of computer technologies. In the 1990s, I penned some articles on various aspects of the affective relationship we have with what were then emphatically ‘non-mobile’ digital technologies: the chunky desktop personal computer (PC). My argument was that using these PCs we developed a relationship with them that borders on the anthropomorphic.

One such piece was an essay entitled ‘The embodied computer/user’ (Lupton, 1995), where I explored the emotions that may be evoked by the PC not working or taking over one’s life, including  frustration, hostility and fear, and the tendency for users to describe their PCs as ‘friends’, ‘work companions’ or even ‘lovers’. With Greg Noble (Lupton and Noble, 1997) I then conducted some empirical research using interviews to address the ways in which the users of desktop computers incorporated their technologies in the context of the academic workplace. Our findings showed that PC users tended to evince an ambivalent position between seeing their PCs as humanoid and resisting this. Some people gave their PCs human names, or ascribed a gender or personality to them, describing them as spiteful, sexy, grumpy, intelligent or stupid. One person remarked that she saw her PC as ‘part of me’, ‘an extension of myself’.

I am still very interested in these dimensions of digital technology use (see here for a recent journal article and here, here and here for my blog posts on mHealth technologies and the quantified self). Digital technologies now have far more of a capacity to be intimately involved in our lives. Now, more than ever, as the new digital technologies become ever more mobile and wearable, as we carry them on our bodies throughout the day or even wear them at night (in the case of self-tracking headbands with embedded sensors designed to monitor sleep patterns): indeed as some can now be swallowed or stuck upon the skin as paper-thin patches to measure bodily functions, they are becoming even more a part of us, part of our bodies as prosthetics of the self, part of our identities as they store more data about our experiences, our social relationships and encounters and our bodily functioning.

There are moments when we become aware of our dependence on technologies, or find them annoying or difficult to use, or lose interest in them. As I have remarked in an earlier post on self-tracking technologies for health purposes, some people find wearable self-tracking devices not fashionable enough, or not water-proof enough, or too clunky or heavy, or not comfortable enough to wear, or find that they get destroyed in the washing machine when the user forgets to remove them from their clothing.

A blog post by designer Jennifer Darmour made similar observations, arguing that the aesthetic dimensions of wearable technologies have been little addressed. If these technologies remain too obvious, she argues, ‘bolting’ these devices to our bodies (an unlikely Frankenstein metaphor) and therefore obviously proclaiming ourselves as cyborgs will ‘distract, disrupt, and ultimately disengage us from others, ultimately degrading our human experience’. Darmour asserts that these objects need to be designed more carefully so that they may be ‘seamlessly’ integrated into the ‘fabric of our lives’. Her suggested ways of doing this include making them look more beautiful, like jewellery (broaches, necklaces, bracelets, rings), incorporating them into fashionable garments, making them peripheral and making them meaningful: using colours or vibrations rather than numbers to display data readings from these devices.

Another blogger has remarked upon the emotions that wearing digital self-tracking devices may provoke in people. Putting on a self-tracking device makes some people feel athletic, some fashionable, others fat and self-conscious about their bodies. Others feel safer and develop a greater sense of security about having their health monitored by these devices. Here again it was noted that the design of the device – its ‘look’, its conspicuousness or lack thereof  – may be integral to how people feel when they wear it.

Researching and theorising the affective dimensions of the configuration of user/mobile device potentially brings together the literatures on affect and emotion, embodiment, actor-network theory, media and cultural studies, the anthropology of material culture, digital cultures, digital sociology, digital anthropology and social computing. One way forward is to tap into the literature on the domestication of technologies emerging from media and cultural studies. This perspective is interested in how we ‘domesticate’ or ‘appropriate’ the technologies we use: that is, incorporate them into our everyday lives. I drew upon some of this work in my earlier research described above, and think that it still has much to offer in relation to understanding our affective attachments to our new digital technologies.

The material culture literature is also relevant to understanding how things in our lives are appropriated, incorporated and domesticated, how meaning and significance is invested in objects, and what the affective dimensions of this may be (see, for example, Miller’s The Comfort of Things and Turkle’s Evocative Objects, and my chapter on ‘emotion, things and places’ in The Emotional Self). So too, the work of Bourdieu, particularly his writings on the habitus, or the habitual practices of everyday life as they contribute to embodiment and subjectivity, may usefully be applied to understanding the interaction of bodies/selves with technologies. The actor-network approach to theorising the ways in which material objects join with fleshly bodies, other people’s bodies, other living things, ideas and practices to configure dynamic assemblages can potentially contribute to theorising and researching the affective dimensions of digital object use.

Computer science is well ahead of sociology when it comes to exploring what is termed in that field ‘social computing’ or ‘human-computer interaction’. The focus for computer scientists is in recognising that users interact with computerised technologies in often emotional ways (sometimes described as the subfield of ‘affective computing’), and to incorporate that recognition into designing systems and technologies that are accepted by users as useful, meaningful and a positive rather than frustrating experience.

Much remains to be explored, including the following questions: What does it feel like to carry, wear and use a mobile digital device? How much does their appearance and size matter? How are these devices incorporated into the habits and practices of everyday life (the habitus)? What are the practices of appropriation? How are they resisted? How do these devices configure users’ bodies and sense of selfhood and what are the emotional dimensions of this? What are the enabling and constraining aspects of their use? How do users adjust to giving up one device for another? How do they feel if the technology stops working? What are the interactions between the feelings configured and circulated via the texts and images produced by these devices and the physical material objects themselves?

References

Lupton, D. (1995) The embodied computer/user. Body & Society, 1(3/4), 97—112.

Lupton, D. and Noble, G. (1997) Just a machine? Dehumanizing strategies in personal computer use. Body & Society, 3(2), 83—101.