I take issue with innovation. To be sure, I admire the creative and practical potential of it, which is what most innovation is about. But it makes me concerned when it becomes all about promising a different, but inevitably better and brighter future for all of us.
For years, I have been observing, with my eyebrows raised simultaneously in awe and suspicion, the hail of praise for technologies in the making. I have been paying attention particularly to those having to do with healthcare which go by the name of e-health, m-health, telemedicine, telecare, or something similar. I have attended meetings where telemedicine projects were conceptualized. I have participated in conferences where their successes and failures were discussed. The success stories usually reported of pilot projects, the failure stories regularly described futile attempts at implementing those very pilots. These later stories were so common that my fellow conference goers joked about telemedicine suffering from “pilotitis,” a chronic condition of the field to produce numerous pilot projects while being unable to make the following step and move from exercises to execution. In these stories, doctors, nurses and/or patients frequently featured as the main heroes, or rather as villains. The IT industry, academia and governments were trying so hard to make the lives of these people better and brighter, and yet these funny creatures stubbornly sabotaged their efforts. Or did they?
What do STS researchers say?
Researchers in Science and Technology Studies (STS) provide some clues to this situation. In her book, Care at a Distance: On the Closeness of Technology, Jeannette Pols looks at the promises of technological innovations in healthcare in the Netherlands. Pols found that these promises generally referred to the ability of technology to support care for the increasing numbers of the elderly, many afflicted with chronic illnesses. Telecare, particularly monitoring the condition of such patients at a distance with the help of specifically designed devices, promised more efficient use of healthcare staff, but also a reduction to the cost of healthcare, since fewer nurses (and less travel time) would be needed. But according to Pols, the pledges of various kinds of efficiency were not always fulfilled. Instead of decreasing the workload, telecare technology changed the nature of work by creating new tasks (for example, healthcare staff had to start taking care of the telecare system, too) and by interfering with some old practices (like keeping a log of care in the patients’ home).
So much for promises. Technologies do not always deliver, or, perhaps even more likely, they deliver something different from what their creators had promised.
How could this be related to those sabotaging villains? Nelly Oudshoorn and Trevor Pinch edited a book entitled How Users Matter: The Constructions and Technology, which offers some insights on these questions. Drawing on research from a number of STS scholars, they show how the gap between exercises and execution in the world of technology may be due to the gap between the users that IT designers envision and the users that actually exist. Despite the increased interest in participatory design (e.g. where the end users are involved throughout the development process of a device), designers often conceptualize a particular gadget based on their anticipations of who the end users might be, including their interests, skills, motives and behavior. Unleashing the technologies ‘in the wild,’ among actual users, might therefore lead to unexpected uses. Even in cases when technology survives this leap into the jungle, it is highly likely that its life in the new environment will be unpredictable.
Ethnographic look from bottom up
Such, then, are some of the major struggles of top-to-bottom approach to e-health and telemedicine. But what would happen if we turned the world upside down and looked at the phenomenon bottom-up? This thought led me to consider what kind of care for the elderly may be possible, and how it could be transformed, by not-so-novel technologies, such as the everyday mobile phones and the Internet. These information and communication technologies (ICTs) have been among us, in the wilderness, for quite some time now and, while various technological gaps still persist, many people globally have made various use of them. Instead of trying to produce something radically new all the time, what could we learn about technology for elder care from what is already there, in front of us?
With this question in mind I embarked on my research with transnational families. The term ‘transnational family’ is not a household name yet, but well known in anthropology and sociology. It describes those families in which family members are spread across two or more countries, sometimes continents apart, yet they sustain close relationships across distance. Out of many options I decided to work with Indian families, since they are numerous and dispersed around the world. I found the South Indian state of Kerala particularly interesting as many people there become nurses in order to migrate abroad for work. If they leave, who takes care of their ageing parents? India has been known for people’s reluctance to use old age homes which are few and far in between. When many young adults leave, it also becomes difficult to rely on the extended family for help. But Kerala is also known as the most developed Indian state, with high literacy, good education and relatively widespread ICT presence. Could everyday ICTs then offer some help, and if so, what kind?
Care collective in Indian transnational families
My fieldwork showed that it is indeed so: a large majority of the families I met and spent time with relied on phones and webcams to keep in touch with their family members all over the world. Approaching care as something that emerges through everyday practice, I looked more closely into the dynamics of ICTs’ interaction with the elderly parents in India and their adult children abroad. I explored this dynamic in terms of the ‘care collective’ (Winance 2010) by answering the following five questions: 1) What kinds of ICTs did Indian transnational families use? 2) Who contacted whom through ICTs? 3) How often did family members communicate through ICTs, and when? 4) How did ICTs require care, too? 5) How did ICTs help to expand the care collective?
Most importantly, I found that contact between family members was frequent, with most of the children calling their parents daily and in some cases several times a day, although there was some diversity between families and also between siblings. The phone call itself proved to be a practice of care, and failing to call regularly resulted in concerns for the parents: Was something wrong with their children, or did they, God forbid, forget about them? Many children were monitoring the health of their parents by paying particular attention to their voice and choice of words. When necessary, the children also used their professional knowledge as nurses to suggest and guide treatments by phone. A male nurse living in Australia asked his brother to send him photos, by smartphone, of his father’s wound to supervise its healing. A female nurse from California directed, by phone, her family members at an emergency drive through Kerala in the middle of the night during which her mother-in-law passed away.
But the parents were not only sitting at home, waiting for their children to provide care. If an emergency came about, they took ICTs in their own hands and organized support for their children living in another country. In one family, the parents activated their extended network by phone to track down their son who failed to call for two weeks after reaching his migration destination. In another family, the parents phoned the police abroad to save their daughter from domestic violence. The parents could not sit on their hands even on the most ordinary days, since they had to take care of their ICTs by interchangeably feeding them with electricity and credit.
Care for the technology turned out to be care for the family relations.
The ICTs, however, did not make a previously poor relation better. While working in one of the Gulf countries, a young female nurse who had a difficult relationship with her father would only speak to him on the phone two or three times a year, but she called her mother every day.
Grandmothers and images
The phone was by far the most used kind of ICTs among the families I worked with. But I was surprised to discover several families in which the elderly women, grandmothers, to be more precise, became ardent users of the webcam. Indeed I was surprised, because I, too, had fallen prey to the stereotypes about the elderly using technology. And yet, there I was chatting with these grandmothers who were blowing the prejudice away.
One of these women, I will call her Alice, a widow in her 70s whose son and daughter lived with their families in the United States of America, told me her saga of securing the Internet connection in her home. When she inquired about this by the government Internet provider, they waved her off with the words, “What do you need the Internet for? You’re an old woman!” She was quite upset about such attitude, but whatever she did, the door to the government Internet would not open for her. Eventually, Alice found a private provider who agreed to bring her the Internet line. “Perhaps they were thinking the same, that I wouldn’t know what to do with Internet,” the woman told me, “but they didn’t care about that.” They saw a selling opportunity, they took it.
Alice’s struggles didn’t end there, though. She indeed didn’t know how to use the Internet, but was eager to learn. So she went to one of the nearby colleges the town to enroll in a computer course. But, lo and behold, there, too, they started making fun of her. It was only due to her persistence that finally somebody agreed to teach her.
What stimulated this elderly widow to go through all this trouble? Alice was telling me this story while flipping photos on her tablet with a finger. Her son had bought her a tablet and was very good at uploading the photos of her grandchildren in a cloud. Hundreds and hundreds of photos. Swish, swish with her finger, one photo after another, and she would not stop smiling. At that point, I understood her drive. Lacking the possibility to do so in person, Alice wanted to learn how to use the Internet, and especially the webcam, to see her grandchildren grow. This was her deepest concern, and she found a way to use the technology to address it.
This made me think about the problems of implementing telemedicine, telecare, but also various health apps – all of those highly innovative systems for elderly and others’ care.
If technology addresses their concerns, people will not only use it, but invest great effort into becoming able to do so. If people refuse to use technology, it may be time to re-evaluate whose concerns are those devices actually addressing, and to acknowledge with sincerity what those concerns, buried under promises, could be.
Pols, J. (2012) Care at a distance: On the Closeness of Technology. Amsterdam: University of Amsterdam Press.
Oudshoorn, N. and T. Pinch (2003) How Users Matter: The Constructions and Technology. London: The MIT Press.
Winance, Myriam. 2010. “Care and Disability. Practices of Experimenting, Tinkering with, and Arranging People and Technical Aids.” In Care in Practice. On Tinkering in Clinics, Homes and Farms, edited by Mol, Annemarie, Ingunn Moser and Jeannette Pols. Bielefeld: transcript Verlag, p. 93-117.