Love them or hate them? Bringing emotions into the study of assisted living technologies
Professor Trisha Greenhalgh and Gemma Hughes reflect on their recent public engagement programme at the Pitt Rivers Museum.
The public engagement programme brought together researchers from the Nuffield Department of Primary Care Health Sciences with community members, design students and colleagues from the Pitt Rivers Museum to consider the emerging findings from the SCALS (Studies in Co-creating Assistive Living Solutions) research programme. The research team had found that there was often a mismatch between the way people actually use assisted living technologies to help them live at home and their intended use. The public engagement programme offered a novel way of considering the complexity of human and societal connections with technology.
This is a picture of Trish’s bicycle. It’s heavy, slow and only has three gears, but of all her bicycles it’s the one she likes best. She got it from the charity Elephant Bike, who recondition old Post Office bikes; they send one to Africa for every one they sell in the UK. It’s old-fashioned and sturdy and embodies a sense of history (50 years ago, someone delivered letters on it). It fits well with the surrounding landscape as Trish commutes between Oxford’s ancient buildings. Somewhere in Africa, her bicycle’s twin is helping a person set up a small business and pull a family out of poverty. Trish says; ‘I love my bicycle because it is functional and aesthetically pleasing and because it connects me with things that matter to me across both time and space.’
In 2002, Marianne de Laet and Annemarie Mol published a study of the Zimbabwean Bush Pump (a low-technology hydraulic pump which, implemented adaptively in different settings, had brought affordable clean water to remote communities). In their opening paragraph, they announced that “[W]e happen to like, no, even better, to love, the Zimbabwean bush pump in all its many variants. But even if affection moves our writing, this is not an exercise in praise. Rather, we want to analyse the specific quality that attracts us to the Zimbabwean Bush Pump. This turns out to be its fluidity.”
De Laet and Mol’s emotionally-driven approach to researching technologies defiantly challenges the expectation that scientists should act as detached observers. These authors love the Zimbabwean Bush pump because it is solid and mechanical and cobalt blue and built from locally-sourced components and owned, installed and tended by communities whose children dance around it — and because it still works even if a few of its bolts are missing. Most of all, they love it because different communities adapt, repair and extend it in different ways to meet their varied and changing needs. Like Trish’s bicycle, the Zimbabwean Bush Pump has practical value, cultural meaning and moral worth in the contexts where it is used.
De Laet and Mol are [post-] actor-network theorists who draw on insights from Bruno Latour. The technological is never separate (or separable) from the social. Rather, technologies are deeply embedded with, and shaped by, their human and societal connections (indeed, it is often helpful to think of a technology as part of a dynamic socio-technical “assemblage”). Technologies have a history and a provenance, as well as aesthetic and moral dimensions. They mean different things to different people and in different contexts. And as the Zimbabwean Bush Pump story illustrates, technologies are made to “work” (or not) through complex infrastructures (networks) of people-and-technologies who take adaptive actions over time to embed and maintain them in a changing society.
SCALS: Studies in Co-creating Assistive Living Solutions
For several years, Trish’s team has been conducting interdisciplinary research on assisted living technologies — that is, technologies designed to help people live independently in their own homes despite chronic — and often progressive — illness and frailty. In both our previous ATHENE project, funded by the Technology Strategy Board, and the ongoing SCALS project, funded by the Wellcome Trust, we have been struck by the mismatch between policy ideals of “assisted living solutions” and the reality of how individuals and their families actually use technologies to support independent living. This mismatch explains why people often choose not to use particular technologies (or find they are unable to do so).
Policymakers’ dreams and visions for assisted living are inspired by apps and gadgets produced and sold by commercial suppliers, which will — they anticipate — empower users, radically transform the way care is delivered and generate efficiency savings for the health and care system (a set of linked assumptions that sociologists call “technological determinism”). Almost without exception, the assisted living technologies in policymakers’ minds are novel, futuristic and manufactured at scale as generic (though perhaps not universal) solutions to particular target conditions such as dementia, social isolation or risk of falls. When developing such technologies, the emphasis is usually on technical performance in an isolated laboratory-style setting rather than on the technology’s cultural symbolism or how it actually performs in the messy reality of the home.
Messy realities
Our research has shown that when real people address the challenges of living with chronic illness, disability and isolation, the solutions they produce are very different from the prototypes offered in commercial exhibitions of what is sometimes called “senior living”. For one thing, such solutions may not involve technologies at all. If technologies are involved, they are typically repurposed from materials already present in the individual’s home, perhaps with adaptations or extensions provided by relatives. Almost always, workable solutions are bespoke and developed with or for the individual by someone who knows and cares about them. The technology “works” because it aligns with what matters to the person (often because it has particular historical and cultural connections for them) and because it fits into a wider assemblage of people-and-technologies that can be strengthened and stabilised through adaptive human action.
The mismatch between vision (new shiny things) and reality (pragmatic repurposing and adaptation of old things) in assisted living prompted us to develop a series of public workshops culminating in an exhibition in collaboration with Oxford’s Pitt Rivers Museum, entitled Messy realities: the secret life of technologies. We used the word “secret” because the ways people actually use technologies to help them live in the home are typically hidden from public view. We thought it was time to surface these messy realities.
From pendant alarms to amulets
Take pendant alarms, for example. Designed primarily for older people living alone, a pendant alarm is typically offered to a person is considered to be “at risk” (especially of falling). The device is intended to be worn constantly around the neck and activated in an emergency (for example, if the person falls and cannot get up), alerting a staff member in a call centre who can initiate a response. Once it has been supplied, everyone (the person, their relatives and care staff) tend to feel reassured. But research by our own team and others has shown that many people don’t wear their pendant alarm (because they don’t like the look or feel of it, or because they are anxious about setting it off accidentally) and that many people don’t use their alarm as directed. For example, they might keep wearing the pendant when they go out of the house even though it only actually works when used within the home, because holding onto it makes them feel safer.
The dictionary definition of a pendant is “a piece of jewellery that hangs from a chain worn round the neck”. In many cultures throughout history, amulets (defined as “anything worn about the person as a charm preventative against evil, mischief, disease, witchcraft, etc.”) have been worn as pendants. Thinking about our research data within the museum gave us an insight into the way that, for some people, the pendant alarm has acquired amulet-like qualities (which explains why they take it with them even when they leave the house when it no longer “works” in the way intended by the designer or supplier). For others, the pendant alarm has no cultural meaning but symbolises ill-health and dependency. Small wonder that such individuals “forget” to wear their device.
The Pitt Rivers museum includes over 6000 amulets, both ancient and modern, sourced from around the world. The picture above shows one such amulet alongside a pendant alarm typically found in our ethnographic research with people living in the UK 2015–2018. The pendant amulet on the left originates from Myanmar. The necklace is made of woven plant material, and the centre of the amulet contains a seed pod. On close examination the seed pod can be seen to have two protuberances that resemble snake fangs. The amulet recruits sympathetic magic to protect the bearer from snake bites. The visual comparison between the amulet and pendant alarm starkly illustrates the gap between cultural objects which belong to their context and institutional objects that are culturally sterile and functional. One idea for personalising pendant alarms, and therefore making them fit better into (some) people’s homes and lives, that came up from discussions with visitors to the Museum and the Yarnfulness project was to crochet a cover and chain (shown below).
Trish, of course, tweeted about our work at the Museum and made connections with others interested in these ideas. We heard about the body of academic work that examines, and seeks to extend the design of technologies in relation to human connections including, for example, that of Professor Jayne Wallace. Professor Wallace has studied the relationships between jewellery, the body and human relationships and is currently investigating the potential of digital media in enabling ongoing connections between people. Combining the functions of an alarm with the aesthetics of jewellery has inspired the creation of an onyx pendant alarm that doubles as jewellery made by a commercial supplier (shown below). This kind of approach acknowledges the need for assistive living technologies to have aesthetic appeal to the people who will be using them, as well as serving a functional purpose.
Rethinking how technologies ‘work’
Our exploration of amulets and other technologies in the Pitt Rivers Museum illustrated that whilst assuring safety for vulnerable people at home is often presented as a modern, technological challenge, it is also an issue that has been addressed through cultural artefacts over the centuries. For a pendant alarm to “work”, it needs to have appropriate technical connections (to the call centre) — but also appropriate material properties (not too heavy or clunky to use) and symbolic connections (to the cultural meaning of things worn around the neck). For amulets to “work” they need to come from, and be accepted as connecting to, a protective network of beliefs.
Our work with the Pitt Rivers Museum made us think differently about assistive living technologies, and to appreciate technologies as objects, with important material and aesthetic attributes. Material and aesthetic attributes reflect the contexts which produce technologies, with the shiny vision of the future producing institutional, streamlined gadgets which fit awkwardly into the messy life of the average home, but that can provide reassurance and comfort when personalised or invested with emotion and connection. Much like Trish’s bike or de Laet and Mol’s pump, technologies have multiple purposes and meanings relating to their cultural and social context, often reflected in their aesthetic appeal (or lack of) that cannot be assumed to “work” as solutions for assistive living without an appreciation of the lives they are intended to assist.
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