Social media and self-representation in health and medical domains

Funny-Meme-about-Depression-4-300x300This is an excerpt from chapter 3 (on digitised embodiment) in my forthcoming book Digital Health: Critical and Cross-Disciplinary Perspectives, due to be published this August – details here.

It is not only medical technologies that have contributed to new forms of digitised embodiment. Many popular forums facilitate the uploading of images and other forms of bodily representations to the internet for others to view. Pregnancy, childbirth and infant development represent major topics for self-representation and image sharing on social media. Since the early years of the internet, online forums and discussion boards have provided places for parents (and particularly women) to seek information and advice about pregnancy, childbirth and parenting as well as share their own experiences. Apps can be now be used to track pregnancy stages, symptoms and appointments and document time-lapse selfies featuring the expansion of pregnant women’s ‘baby bumps’. Foetal ultrasound images are routinely posted on Facebook, Twitter, Instagram and YouTube by excited expectant parents (Thomas and Lupton, 2015; Lupton and Thomas, 2015; Lupton, 2016).

Some parents continue the documentation of their new baby’s lives by sharing photographs and videos of the moment of their birth (Longhurst, 2009) and milestones (first steps, words uttered and so on) on social media. Wearable devices and monitoring apps allow parents to document their infants’ biometrics, such as their sleeping, feeding, breathing, body temperature and growth patterns (Lupton and Williamson, 2017). The genre of ‘mommy blogs’ also offers opportunities for women to upload images of themselves while pregnant and their babies and young children, as well as providing detailed descriptions of their experiences of pregnancy and motherhood (Morrison, 2011). These media provide a diverse array of forums for portraying and describing details infants’ and young children’s embodiment. A survey of 2,000 British parents’ use of social media for sharing their young children’s images conducted by an internet safety organisation estimated that the average parent would have posted almost 1,000 images to Facebook (and to a much lesser extent, Instagram) by the time their child reached five (Knowthenet 2015). Contemporary children, therefore, now often have an established digital profile before they are even born offering an archive of their physical development and growth across their lifespans.

People with medical conditions are now able to upload descriptions and images of their bodies to social media to share with the world. YouTube offers a platform for such images, but they are also shared on other social media such as Facebook, Instagram, Tumblr and Pinterest. Pinterest offers a multitude of humorous memes and images with inspirational slogans designed to provide support to people with various conditions such as chronic illness. Humorous memes include one with a drawing of a young woman sitting on a bed with her hand over her face and the words ‘Why are there never any good side effects? Just once I’d like to read a medication bottle that says, “May cause extreme sexiness”’. Other images about chronic illness are less positive, used to express people’s despair, pain or frustration in struggling with conditions such as autoimmune diseases, endometriosis and diabetes. Examples include a meme featuring a photo of a person with head bowed down (face obscured) and the words ‘When your chronic illness triggers depression’ and another showing a young woman’s face transposed over an outline of her body with the text: ‘The worst thing you can do to a person with an invisible illness is make them feel like they need to prove how sick they are.’

‘Selfie’ portraits enable people to photograph themselves in various forms of embodiment. There is now a genre of selfies showing subjects experiencing ill-health or medical treatment. These include self-portraits taken by celebrities in hospital receiving treatment for injuries. A larger category of health and medical-related selfies include those that show people in a clinical or hospital setting undergoing treatment, experiencing symptoms or their recovery after surgery. Among the social media platforms available for such representation, Tumblr is favoured as a forum for posting more provocative images that challenge accepted norms of embodiment. One example is Karolyn Gehrig, who uses the #HospitalGlam hashtag when posting selfies featuring her self-identified ‘queer/disabled’ body in hospital settings. Gehrig has a chronic illness requiring regular hospital visits, and uses the selfie genre to draw attention to what it is like to live with this kind of condition. The photographs she posts of herself include portraits in hospital waiting and treatment rooms in glamour-style poses. She engages in this practice as a form of seeking agency and control in settings that many people find alienating, shaming and uncertain (Tembeck, 2016).

People who upload selfies or other images of themselves or status updates about their behaviour on social media are engaging in technologies of the self. They seek to present a certain version of self-identity to the other users of the sites as part of strategies of ethical self-formation (van Dijck, 2013; Sauter, 2014; Tembeck, 2016). In the context of the ‘like economy’ of social media (which refers to the positive responses that users receive from other users on platforms like Facebook, Twitter and Instagram) (Gerlitz and Helmond, 2013), users of these platforms are often highly aware of how they represent themselves. This may involve sharing information about a medical condition or self-tracking fitness or weight-loss data (Stragier et al., 2015) as a way of demonstrating that the person is adhering to the ideal subject position of responsibilised self-care and health promotion.

It can be difficult for users to juggle competing imperatives when sharing information about themselves online. Young women, in particular, are faced with negotiating self-representation practices on social media that conform to accepted practices of fun-loving femininity, attractive sexuality or disciplined self-control over their diet and body weight but do not stray into practices that may open them to disparagement for being ‘slutty’, fat, too drunk or otherwise lacking self-control, too vain or self-obsessed or physically unattractive (Hutton et al., 2016; Ferreday, 2003; Brown and Gregg, 2012).  It is important to acknowledge that as part of self-representation, people may also seek to use their social media forums to resist health promotion messages: by showing people enjoying using illicit drugs or alcoholic drinking to excess, for example. Fat activists have also benefited from the networking opportunities offered by blogs and social media to work against fat shaming and promote positive representations of fat bodies (Cooper, 2011; Smith et al., 2013; Dickins et al., 2011).

More controversially, those individuals who engage in proscribed body modification practices, such as self-harm, steroid use for body-building or the extreme restriction of food intake (as in ‘pro-ana’ and ‘thinspiration’ communities) also make use of social media sites to connect with likeminded individuals (Boero and Pascoe, 2012; Center for Innovative Public Health Research, 2014; Fox et al., 2005; Smith et al., 2013). Most social media platforms have polices in place to prohibit these kinds of interactions, but in practice many users manage to evade them. The platforms have a difficult task, because they want to support people’s attempts to communicate with each other about their management of and recovery from health conditions like self-harm or eating disorders but are loath to be viewed as promoting the efforts of those resisting recovery and promoting these behaviours. Their attempts to police the representation of nude human bodies for fear of contributing to pornography are also controversial. Until it changed its policy in 2014, Facebook was the subject of trenchant critique for censoring photographs that women have tried to share on the platform portraying them breastfeeding their infants because of concerns that they were showing their nipples, a body part that Facebook usually prohibits in users’ posts because they are deemed to be obscene. Facebook’s new policy also allowed mastectomy survivors to post images of their post-operative bare torsos, even when nipples were displayed (Chemaly, 2014).

References

Boero N and Pascoe CJ. (2012) Pro-anorexia communities and online interaction: bringing the pro-ana body online. Body & Society 18: 27-57.

Brown R and Gregg M. (2012) The pedagogy of regret: Facebook, binge drinking and young women. Continuum 26: 357-369.

Center for Innovative Public Health Research. (2014) Self-harm websites and teens who visit them. Available at http://innovativepublichealth.org/blog/self-harm-websites-and-teens-who-visit-them/.

Chemaly S. (2014) #FreeTheNipple: Facebook changes breastfeeding mothers photo policy. Huffpost Parents. Available at http://www.huffingtonpost.com/soraya-chemaly/freethenipple-facebook-changes_b_5473467.html.

Cooper C. (2011) Fat lib: how fat activism expands the obesity debate. Debating Obesity. Springer, 164-191.

Dickins M, Thomas SL, King B, et al. (2011) The role of the fatosphere in fat adults’ responses to obesity stigma: a model of empowerment without a focus on weight Loss. Qualitative Health Research 21: 1679-1691.

Ferreday D. (2003) Unspeakable bodies: erasure, embodiment and the pro-ana community. International Journal of Cultural Studies 6: 277-295.

Fox N, Ward K and O’Rourke A. (2005) Pro-anorexia, weight-loss drugs and the internet: an ‘anti-recovery’ explanatory model of anorexia. Sociology of Health & Illness 27: 944-971.

Gerlitz C and Helmond A. (2013) The like economy: social buttons and the data-intensive web. New Media & Society 15: 1348-1365.

Hutton F, Griffin C, Lyons A, et al. (2016) ‘Tragic girls’ and ‘crack whores’: alcohol, femininity and Facebook. Feminism & Psychology 26: 73-93.

Longhurst R. (2009) YouTube: a new space for birth? Feminist Review 93: 46-63.

Lupton D. (2013) The Social Worlds of the Unborn, Houndmills: Palgrave Macmillan.

Lupton D. (2016) Mastering your fertility: the digitised reproductive citizen In: McCosker A, Vivienne S and Johns A (eds) Negotiating Digital Citizenship: Control, Contest and Culture. London: Rowman & Littlefield.

Lupton D and Thomas GM. (2015) Playing pregnancy: the ludification and gamification of expectant motherhood in smartphone apps. M/C Journal, 18. Available at http://journal.media-culture.org.au/index.php/mcjournal/article/viewArticle/1012.

Lupton D and Williamson B. (2017) The datafied child: the dataveillance of children and implications for their rights. New Media & Society.

Morrison A. (2011) “Suffused by feeling and affect”: the intimate public of personal mommy blogging. Biography 34: 37-55.

Sauter T. (2014) ‘What’s on your mind?’ Writing on Facebook as a tool for self-formation. New Media & Society 16: 823-839.

Smith N, Wickes R and Underwood M. (2013) Managing a marginalised identity in pro-anorexia and fat acceptance cybercommunities. Journal of Sociology.

Stragier J, Evens T and Mechant P. (2015) Broadcast yourself: an exploratory study of sharing physical activity on social networking sites. Media International Australia 155: 120-129.

Tembeck T. (2016) Selfies of ill health: online autopathographic photography and the dramaturgy of the everyday. Social Media + Society, 2. Available at http://sms.sagepub.com/content/2/1/2056305116641343.abstract.

Thomas GM and Lupton D. (2015) Threats and thrills: pregnancy apps, risk and consumption. Health, Risk & Society 17: 495-509.

van Dijck J. (2013) ‘You have one identity’: performing the self on Facebook and LinkedIn. Media, Culture & Society 35: 199-215.

 

 

Affective atmospheres and digital health

I have just submitted an essay for the special issue of Digital Health I am editing on the senses and digital health. In the essay I outline how the concept of affective atmospheres can be used to understand how and why people use or fail to take up digital health technologies, with a particular focus on the sensory and affective dimensions of these responses. The preprint version is available here, and the abstract is below.

The concept of affective atmospheres has recently emerged in cultural geography to refer to the feelings that are generated by the interactions and movements of human and nonhuman actors in specific spaces and places. Affective atmospheres can have profound effects on the ways in which people think and feel about and sense the spaces they inhabit and through which they move and the other actors in those spaces. Thus far, very little research has adopted this concept to explore the ways in which digital health technologies are used. As part of seeking to redress this lacuna, in this essay I draw on previously published literature on affective atmospheres to demonstrate and explain the implications of this scholarship for future theoretical and empirical scholarship about digital health practices that pays attention to their affective and sensory elements. The article is structured into six parts. The first part outlines the concepts and research practices underpinning affective atmospheres scholarship. In the second part, I review some of the research that looks at place, space and mobilities in relation to affective atmospheres. In the third part I go on to focus more specifically on the affective atmospheres of medical encounters, and then move on to digital technology use in the fourth part. I then address in the fifth part some relevant scholarship on digital health technologies. I end the essay with some reflections of directions in which future research taking up the concept of affective atmospheres in the context of digital health technologies can go. The key research question that these topics all work towards is that asking ‘How does digital health feel?’

Self-tracking, social fitness and biovalue

I have just completed a chapter for the forthcoming volume The Sage Handbook of Social Media. The chapter addresses the intersections of self-tracking for health and medical purposes with social media platforms and rationales. As I argue in the chapter, the expanded array of digitised devices that are available for self-tracking and the capacity of many of these technologies to interact with social media platforms have encouraged self-trackers to share the details that they collect about themselves with others. I begin with a description of self-tracking and the sociomaterial theoretical foundations on which the chapter rests. This is followed with an overview of the technologies that are available for health and medical self-tracking and for self-trackers to share their data. The discussion section of the chapter presents an analysis of the new forms of value that personal health and medical data have attracted in the digital data economy, and the moral and political repercussions of encouraging people to participate as socially fit citizens. The chapter ends with outlining key questions for further research.

The full pre-print of the chapter is available here.

Medical diagnosis apps – study findings

Over 100,000 medical and health apps for mobile digital devices have now been listed in the Apple App Store and Google Play. They represent diverse opportunities for lay people to access medical information and track their body functions and medical conditions. As yet, however, few critical social researchers have sought to analyse these apps.

In a study I did with Annemarie Jutel we undertook a sociological analysis of medical diagnosis apps, and two articles have now been published from the study. Annemarie is a sociology of diagnosis expert and we were interested in investigating how these apps represented the process of diagnosis. We drew on the perspective that apps are sociocultural artefacts that draw on and reproduce tacit norms and assumptions. We argue that from a sociological perspective, digital devices such as health and medical apps have significant implications for the ways in which the human body is understood, visualised and treated by medical practitioners and lay people alike, for the doctor-patient relationship and the practice of medicine.

In one article, published in Social Science & Medicine, we focused on self-diagnosis apps directed at lay people. We undertook a search using the terms ‘medical diagnosis’ and ‘symptom checker’ for apps that were available for download to smartphones in mid-April 2014 in the Apple App Store and Google Play. We found 35 self-diagnosis apps that claimed to diagnose across a range of conditions (we didn’t include apps directed at diagnosis of single conditions). Some have been downloaded by tens or hundreds of thousands, and the case of WebMD and iTriage Health, millions of smartphone owners.

Our analysis suggests that these apps inhabit a contested and ambiguous site of meaning and practice. The very existence of self-diagnosis apps speaks to several important dimensions of contemporary patienthood and healthcare in the context of a rapidly developing ecosystem of digital health technologies. They also participate in the quest for patient ‘engagement’ and ‘empowerment’ that is a hallmark of digital health rhetoric (or what I call ‘digital patient engagement’).

Self-diagnosis apps, like other technologies designed to give lay people the opportunity to monitor their bodies and their health states and engage with the discourses of healthism and control that pervade contemporary medicine We found that app developers combined claims to medical expertise in conjunction with appeals to algorithmic authority to promote their apps to potential users. While the developers also used appeals to patient engagement as part of their promotional efforts, these were undermined by routine disclaimers that users should seek medical advice to effect a diagnosis. While the cautions that are offered on the apps that they are for ‘entertainment purposes only’ and not designed to ‘replace a diagnosis from a medical professional’ may be added for legal reasons, they detract from the authority that the app may offer and indeed call into question why anyone should use it.

In our other article, published in the new journal Diagnosis, we directed attention at diagnosis apps that are designed for the use of medical practitioners as well as lay people. We analysed 176 such apps that we found in Google Play and the Apple App Store in December 2013. While 36 of these were directed at lay people, the remainder were for medical practitioners. The Diagnosis article mainly concentrates on the latter, given that our other article was about the self-diagnosis apps for lay people.

Our research suggests that these apps should be used with great caution by both lay people and practitioners. The lack of verifiable information provided about the evidence or expertise used to develop these apps is of major concern. The apps are of very variable quality, ranging from those that appear to have the support and input of distinguished medical experts, specialty groups or medical societies to those that offer little or nothing to support their knowledge claims. While at one end of the spectrum we can see apps as a delivery system for information which has been subject to the conventional forms of academic review, at the other extreme, we see apps developed by entrepreneurs with interests in many topics outside medicine, with little input from medical sources, or with inadequate information to ascertain what the sources might be. The lack of information provided by many app developers also raises questions about how users can determine the presence of conflicts of interest and commercial interests that might determine content.

Towards a sociology of 3D printing

As a digital sociologist, I have become fascinated by the social and cultural implications of 3D printing technologies. Few sociologists or any other critical academic commentators have begun to investigate how 3D printing is beginning to affect society. Yet as 3D printing technologies move into an expanding realm of contexts, there is much opportunity to analyse their effects. Not only are these technologies having an impact on industrial manufacturing and the distribution of goods, makers, artists and designers are taking them up in intriguing ways. 3D printing is being used in medicine and dentistry, public relations and marketing and in fan cultures. These technologies are being introduced into schools and incorporated into the curriculum. As the price of 3D printers falls, they will become an addition to more households. There are significant environmental and legal issues in relation to how they are used, including questions about intellectual property.

As part of my initial explorations into the sociology of 3D printing, last week I published two pieces on these technologies. One was an article for The Conversation, in which I discussed the phenomenon of the 3D self replica. This is a figurine that can be made of a person using the digital data derived from 3D scanning software. The technologies to generate these artefacts are rapidly moving into a range of leisure domains, including sporting events, shopping centres, airports, concerts and amusement parks as well as fan cultures and marketing programs. 3D printed self replicas can even be made at home using a software package developed for the Xbox Kinect game box and a home 3D printer. Some commentators have referred to these replicas as ‘3D selfies’ because they involve the production of a personal likeness. In the article I speculated about the ways in which people may start to use these figures as markers or mementos of their bodies and social relationships.

The second piece was an academic article that discusses the use of 3D printing of what I entitle ‘digital body objects’ for medical and health-related purposes. The article explores the use of non-organic materialisations of people’s body parts for medical purposes as well as the fabrication of self-tracked bodily data into objects. Here is the abstract: the full paper can be accessed here:

The advent of 3D printing technologies has generated new ways of representing and conceptualising health and illness, medical practice and the body. There are many social, cultural and political implications of 3D printing, but a critical sociology of 3D printing is only beginning to emerge. In this article I seek to contribute to this nascent literature by addressing some of the ways in which 3D printing technologies are being used to convert digital data collected on human bodies and fabricate them into tangible forms that can be touched and held. I focus in particular on the use of 3D printing to manufacture non-organic replicas of individuals’ bodies, body parts or bodily functions and activities. The article is also a reflection on a specific set of digital data practices and the meaning of such data to individuals. In analysing these new forms of human bodies, I draw on sociomaterialist perspectives as well as the recent work of scholars who have sought to reflect on selfhood, embodiment, place and space in digital society and the nature of people’s interactions with digital data. I argue that these objects incite intriguing ways of thinking about the ways in digital data on embodiment, health and illnesses are interpreted and used across a range of contexts. The article ends with some speculations about where these technologies may be headed and outlining future research directions.

These initial forays into a sociology of 3D printing represent merely a small component of possible avenues for theorising and research into the social impact of this technology. What I am particularly interested in at the moment is the implications for people’s data practices, or how the material objects that are generated from 3D printing technologies act as ‘solidified’ personal data. Future writings will investigate these issues in greater depth.

Pathologising young children’s emotions

fearfull and crying child before dental treatment

 (Photo credit: Wikipedia)

The Australian government has announced a new screening program for three-year-old children to determine whether they have a mental health problem. All children of that age will be offered the Healthy Kids Check from next month, predominantly conducted by general practitioners. As part of this check, which also seeks to identify health problems such as allergies and developmental delays and checks hearing and eyesight, doctors will ask questions of the children’s parents in a bid to identify children who are showing signs of having or developing a mental illness or condition such as anxiety disorder, autism, bipolar disorder or attention deficient hyperactivity disorder (ADHD). Those who are identified as demonstrating such behaviour will be referred to paediatric psychologists or paediatricians for further diagnosis and treatment. Doctors will be looking for such behaviours as shyness, aggression, difficulty with impulse control and the desire to sleep at night with a light left on.

This is a troubling move towards pathologising young children’s emotions as indicators of mental illness. It may be seen as a progressive medicalising of what previously have been understood as normal responses and behaviours. The singling out of such emotional responses as fear of the dark, difficulty in controlling impulses and aggression represents such emotional responses as abnormal and in need of treatment and control, despite the fact that the children involved in the screening are so young that they are barely out of nappies.

Over forty years ago, sociologists such as Freidson, Zola and Illich began to write about the tendency of medicine to exert its power and authority over an increasingly large domain of human behaviour and experience. More recently, Nikolas Rose and others have noted the rise of the ‘psy disciplines’ in particular — psychology, counselling, psychiatry — as well as developments in neurobiology as progressively gathering behaviours under their authority. Rose (2010) has commented on the emergence of the concept of the ‘risky brain’, or the brain considered most likely to potentially cause its owner to behave in irrational, criminal, risk-taking or other ways considered inappropriate. He notes that attempts to identify susceptible individuals is part of a culture of ‘precaution, pre-emption and prevention’, in which it is considered important to identify potential difficulties with the ways in which people conduct themselves, even if there is only a small possibility that these difficulties may occur.

In the Australian government’s new initiative to identify young children who may be susceptible to mental illness in later life, thousands of children and their parents will be incorporated into a web of surveillance in which what seem like very minor behaviours common to many children (such as fear of the dark) will position these children as potentially at risk. Such a program  is overtly prescriptive in assuming that young children should not feel fear or shyness or sometimes aggressive towards others, or fail to control their impulses. The notion that children should be able to control their emotions underpins these assumptions. This conforms to a general societal trend towards lack of tolerance of the inability of children to behave in a ‘civilised’ fashion and increasingly high expectations that they should demonstrate emotional control similar to that achieved by adults (see my previous post ‘Animals as children, children as animals’).

While it is important that young children with significant mental illness receive an early diagnosis and treatment, this mental health screening directed at all children in the target age bracket will inevitably result in many children being identified as potentially at risk. It will label them with a possible mental health problem and create great anxiety in their parents. Moral judgements and stigmatisation are inevitably involved in diagnoses of what is considered ‘abnormal’ behaviour in children. Being singled out as ‘at risk’ of mental illness and requiring further medical intervention may lead to the stigmatising of children, potentially for many years.

What is more, there is a continuing debate about how to treat such conditions in children as ADHD, and indeed whether the behaviours incorporated into these conditions should be considered abnormal and requiring treatment. Some critics have argued that ADHD is simply the expression of normal, albeit challenging, childish behaviour that is pathologised because it causes disruption in contexts such as classrooms in ways that adults find difficult to manage and therefore seek to control via medical intervention and treatment with drugs (Visser and Jehan, 2009). The same might be said of aggressive, fearful or anxious behaviour in very young children. Yet it is likely that diagnosis rates of such conditions — and associated therapeutic and pharmaceutical treatments — will rise steeply in the wake of the Healthy Kids Check initiative.

References

Rose, N. (2010) ‘Screen and intervene’: governing risky brains. History of the Human Sciences, 23(1), 79–105.

Visser, J. and Jehan, Z. (2009) ADHD: a scientific fact or a factual opinion? A critique of the veracity of Attention Deficit Hyperactivity Disorder. Emotional and Behavioural Difficulties, 14(2), 127–40.

New book: Medicine as Culture: Illness, Disease and the Body

Medicine as Culture: Illness, Disease and the Body is unlike any other sociological text on health and medicine. It combines perspectives drawn from a wide variety of disciplines including sociology, anthropology, social history, cultural geography, and media and cultural studies. The book explores the ways in which medicine and health care are sociocultural constructions, ranging from popular media and elite cultural representations of illness to the power dynamics of the doctor-patient relationship.

The Third Edition has been updated to cover new areas of interest, including:

– studies of space and place in relation to the body

– actor-network theory as it is applied in research related to medicine

– The internet and social media and how they contribute to lay health knowledge and patient support

– complementary and alternative medicine

– obesity and fat politics.

Contextualising introductions and discussion points in every chapter makes Medicine as Culture, Third Edition a rigorous yet accessible text for students.

SAGE: Medicine as Culture: Illness, Disease and the Body: Third Edition: Deborah Lupton: 9781446208953.