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Facebook Is Changing the Way We Talk About Death

Daniel Miller's 'The Comfort of People' is a new study that highlights the profound relationship between social media and terminal illness.

by Angus Harrison
Oct 10 2017, 12:48pm

Image via Pixabay

Nobody talks about death in England. The end, as inevitable as it may be, is hemmed in by good manners and religion. Discussing it openly leaves us scared or squeamish, fearful we've said the wrong thing and reticent to ask anything else. At least, traditionally that's always been the case.

Over the past decade, most of us will have experienced the loss of a mutual, if not close, friend. As such, we will also have experienced how illness, dying and grief now manifest online – from public posts updating friends with their status, to specialist groups for sufferers to discuss their condition together. Facebook has given us a platform for informal, communal mourning – as well as allowing the dying to take control of how they tell their story. Put bluntly, social media has provided dying a new lease of life.

Daniel Miller is professor of Anthropology at UCL. He has researched extensively the uses and consequences of social media, most recently as part of the "Why We Post" project, which tracked and compared social media use in wildly disparate locations from industrial China to rural South West England. His new book, The Comfort of People, examines the social worlds of patients in a rural English hospice. Across interviews with 50 patients – mostly with terminal diagnoses, many who have since died – the book builds a detailed vision of how new technologies have revolutionised the way death is discussed and experienced.

The impacts vary from case to case. Miller observes a very English reservedness that puts a lot of older patients off the idea of publicly discussing their illness online. Yet those who did embrace new technologies were able to use them in a number of practical and powerful ways – reaching out to old or distant friends, organising their visitors, or more profoundly processing their illness through external reflection. Miller's book is a tough read at times, purely down to the realness of its subjects, but it points to the ways in which new technologies are influencing the ways we process death.

I spoke to him over Skype to find out more about his research and findings.

VICE: What drew you to hospices in the first place?
Daniel Miller: I was approached by the director of the hospice on a purely practical level. They could see that new media was likely to have – or already has had – a considerable impact on what they do. I didn't have any intention to write about what I found; in essence, it was intended as an opportunity to provide practical advice, and I was actually seeing it as a break from being an academic. But having done the work and finding it so interesting, I thought maybe sharing it was important.

Early on in the book you make a point of refuting the notion that new media forms of communication are lesser than "real life" conversation.
People generally seem to claim new technologies are "more mediated" or "less authentic". Frankly, all that does is romanticise previous forms of communication as though they are unmediated. Yet, people talking face-to-face are acutely aware of everything from etiquette, to what is morally appropriate, to all the cultural rules that hedge the way we communicate with each other. New media has not made communication more mediated; it has simply changed that mediation.

Were you surprised how much people shared about their deaths on Facebook? The first interviewee, Sarah, talks about her desire to use Facebook to encourage people to be more open in how they talk about terminal illness.
I think Sarah's story is quite specific because she saw it in terms of an education. Yet when people find themselves in a situation which may be terminal – they may recover, one hopes – they also come to appreciate that this isn't talked about very openly. It would have been better for them if it was more out in the public domain, therefore they see this as the time to change that culture, and be very open, and to use that very English technology of humour to make it acceptable to other people.

You talk about Facebook as a site of "self and public acknowledgement" of death – particularly in reference to the last interviewee, Matt.
One of the most poignant moments, I think, comes in his story. It was very deliberate that I end the book on a mirror selfie [taken after chemotherapy recovery], because it's just the kind of thing the media likes to trivialise. Yet, to turn something otherwise seen as trivial into actually quite an exquisite statement – the simultaneity by which he could explain to other people the progression of his disease, and also use that to acknowledge it to himself. To me that was an important acknowledgement. People were finding ways to communicate to many people at once, rather than repeat themselves all the time, but also externalising things allowed him to confront them himself.

I was struck by how terminal patients who are using Facebook end up with a public timeline of their condition, written in their words.
[New media] gives people more control over the language. For example, I certainly came across patients who really detest the common ways that things like cancer are discussed. People were coming to them saying things like, "Oh, you've got to fight this." I hadn't realised how inappropriate some of the things I naturally say are. It's not a battle that depends on whether I'm good at it or not. Cancer doesn't work like that.


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Terminal illness also diminishes the patient's social circles through the gradual loss of their job and their mobility – is it safe to say new technologies allow them to reverse this process?
Certainly there are obvious advantages of social media, because it counters things like growing immobility. Several people mentioned that as a result of chemotherapy they can't be around other people for fear of infection, therefore it's really a big deal to be able to have another media like Skype, which is personal but has no risk of infection. Yet, I think one has to be careful not to over-exaggerate the positives. There are many people who find problems with the openness. There are losses of control and gains of control. We lose control over who is telling who, for example. There are problems over privacy. I think it's important to look at the negative effects, and what we need to avoid if possible is either "it's terrible, humanity has lost itself", or, equally, "it resolves all of our problems".

Many of the people in your book who seem most anti-new technologies are older men.
I've thought for a very long time that social media is for older women and not young men. In most societies the people who have traditionally been responsible for circulating news have been older women. I always thought Facebook would migrate to that usage – it seems to fit. But as to your question, the people who don't use it at all are old men who tend to be the ones who are quite upset by what's going on. And yet, the further paradox is they are the ones who most suffer from loneliness and isolation.

I found that particularly sad: men who were opposed to using the internet, but barely had any social interactions in an average day.
I'm a Londoner, so was going to these villages with the notion that they would be more community-focused, that all the neighbours would know each other. That's just not true. A person can be born in a village, schooled there, work there and have a terminal illness there and nobody is coming to their house to visit them.

You write a lot about Englishness in the book, which surprised me initially, perhaps because we tend to think of the internet as a global technology.
This work comes from a wider project – the Why We Post project – which has found that the use of something like Facebook is very different from place to place to place. People in Trinidad do not use it in the same was as people in Southern Italy, who do not use it in the same way as people on the Turkey-Syria border. People simply don't realise how much how we use Facebook is very specifically English.

Do you think Facebook is fundamentally changing the way we talk about death?
One thing that isn't in the book, but I think is really interesting, is what happens after death. If you look at the profiles of people who have died, you'll see that [Facebook] has opened up a whole new way of relating to mourning and grief. Sometimes years afterwards people feel they can tell anecdotes and relate to the memory of the person. It creates communities of bereavement, making them much closer to the modern notion of authentic relations. Actually nothing like that existed before; it's really revolutionary in the practice of grief.

These stories where people go to Facebook and make it into a conversation, a dialogue – I think that will become more common. I think that is quite profound. I can't see any reason why it won't develop in that direction, with whatever consequences.

The Comfort of People is available now from Wiley.

Interview has been edited for length.

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