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The Lancet Commission on the Value of Dying

Daniel Miller7 February 2020

The Comfort of People (2017)

In 2017 I published a book called The Comfort of People (2017 Cambridge:Polity Press), based on research amongst people who had received a terminal diagnosis and were being looked after by a hospice. In that book I made various recommendation for how the hospice might employ new media. More recently I was approached by a group who have been commissioned by the journal The Lancet to develop a special issue around the topic ‘The Value of Dying’. My contribution is called Dying with Smartphones. Much of the time since writing The Comfort of People has been spent in the ASSA project, so this more recent contribution reflects what I have subsequently learnt. The topic is significant, since given the rapid expansion in the usage of smartphones by older people, we might expect that in the future most people will ‘die with smartphones’.

One of the reasons new media matters to the hospice is that most people want to die in their own homes, or at least stay there as long as possible, so most hospice work involved going to, or communicating with, people at home rather than them coming to the hospice. A key finding in our current project, the Anthropology of Smartphones and Smart Ageing, is the appreciation of how much the smartphone has become what we can call ‘the Transportal Home’. On the one hand, it has become a place people live within rather than just a device they use, where they compose their thoughts and entertain themselves. On the other hand, it has huge potential in relation to loneliness and isolation since it is the portal through which we communicate with other people; very different from just watching television. So, the smartphone ‘home’ can be quite convivial. The ASSA project also reinforced the our theory of ‘polymedia’, which posits that different people feel comfortable with different forms of communication and the hospice should not assume which media suits which person. One patient might prefer WhatsApp, another might prefer communicating via webcam, and a third might prefer voice calls. Many people now first want a text that confirms if this is a good time to speak. So the sensitivity of the hospice can be expressed by following patient preferences with regard to how they communicate with people now living within this Transportal Home.

The ASSA project has also seen a huge expansion in something that was just starting during the hospice research, which is the creation of WhatsApp groups by relatives to support the patient. The team members in Brazil and Chile have observed how WhatsApp can be used by medical staff to manage patient requests and other purposes. In general, our project’s conclusion, which focuses on the free and ubiquitous apps that most people already use, rather than bespoke mHealth apps, also applies to palliative care. Each fieldsite offers additional insights. For participants in Kampala, one of the primary uses of smartphones and mobile phones is to send mobile money. These remittances would often be sent to support relatives’ health needs, such as transportation to the hospital and medical fees. Smartphones can also be helpful for people with limited literacy because of the capacity to send visual communication such as photographs.

A major facility of online communications is the space to discuss difficult and embarrassing topics. For example, in China there is widespread taboo against talking about dying. For many, social media has become the first space where people experience the possibility of talking to strangers on this subject. Working with hospice patients in the UK, I found that we need two kinds of forums. One is for those who want to discuss delicate issues around chemotherapy, but only with people who cannot know who they are. Then we need another for patients who only wish to discuss these intimate matters with people they can actually see or know.

Although the ASSA project is not based on studying people with a terminal condition, I very much hope that in the future it will provide useful pointers to the way we can improve our support for people who increasingly will be dying with smartphones.

“The good news of it”: religion & mobile phones

charlotte.hawkins.1711 December 2019

This blog post draws on four interviews about phone use in Go-down (my field site in Uganda), specifically where people discuss using them for religious purposes. The instances that follow show that the phone is sometimes incorporated in moral discourses with reference to religious beliefs; specifically, the individuals cited here expressed concerns around younger people’s phone use and their excessive messaging, categorised as ‘bad’ and improper, whereas preaching or sharing religious knowledge via the phone is considered ‘good’. Aspirations to own a smartphone have also been expressed in relation to faith.

Man walking in south-west Uganda on Good Friday, 2018. Photo by Charlotte Hawkins (CCBY)

Global media, the internet and its influence is sometimes described as ‘dotcom’, younger people today as ‘the dotcom generation’ or ‘the children of dotcom’. Often it is said by older people who are referring broadly to modern developments. Papa, who is Born Again, described dotcom as “like the New Testament, something recent…modern, jumping from the old to the new”. He thinks it can be used in both positive and negative ways, “it helps when you use it well…it even helps us to preach the gospel to people on WhatsApp”. He has an app with the bible on his phone, taking passages from there to forward to his contacts. But he says that he uses his smartphone mostly for Facebook, to keep in touch with people at home in DRC (Democratic Republic of the Congo) and see their pictures. He also listens to preaching on the radio through his phone, specifically on ‘Voice of America’, and to hear about the news in Israel: “You know it is better to know about is Israel because we are in the end time. If anything happens there, you get it in the prophecy of the bible, the way we are walking”.

A Born Again pastor similarly described the good and bad ways of using the phone in religious terms. He is concerned about young people’s use of messaging, particularly when they are supposed to be concentrating on something else, but he is glad that it offers another platform to preach, describing this as the “proper” way to use a phone; “we appreciate the good news of it”.

Assistants to the Imam in the primary mosque in Go-down agree that phones can be used in ways both supportive and detrimental to religion, depending how someone chooses to use them:

Nowadays, people have these phones, but phones nowadays would not be bad in our religion. Because you can be connected to somebody, somebody might ask you for a verse, or ask you any question. Now the problem which we have in our religion, other people… use it in a bad way, there is the problem…when you are back biting someone, it is very bad.

Imams use their personal phones to share their knowledge of their religion via Facebook, and when people call them for advice. If they don’t know the answer, they use either google, their Qu’ran app, or a book called Hismul Muslim to find out or to ask others with knowledge. These apps also help them with their daily recitation, providing the text, as well as translating Arabic texts to English.

Not all participants in Go-down own their own smartphone or mobile phone. Often, they are shared within families. Aleng, one of my research participants, is hoping for a smartphone of her own, and she hopes to learn how to use the internet. Her pastor often posts on social media, so she wants to connect with that. In the meantime, she mostly uses her phone for calling, typically contacting ministry to find out if there’s anything she can help with or participate in. Recently she called because she wanted to send her seeds to the Church to be anointed before planting them: “you anoint when you want God to quicken something”. Her daughter has a smartphone, and she sometimes relays messages back from the family WhatsApp group, but otherwise she feels everything is within her reach. “My God is a miracle God; he will give me a smartphone at any time”. She feels that dotcom is God-given, “these things come, you know God is the offerer of wisdom. If God has allowed such thing to come, it has the negative part of it and the positive part, so it depends on someone using it”. She is glad that it can be used for gospel.

Signs in a primary school in Go-down; ‘Always be God Fearing’, ‘The fear of the Lord is the beginning of Wisdom’. Photo by Charlotte Hawkins (CCBY)