A Short History of Death and the Internet and the deaths we have to come – Transcript

This talk is a rough transcript of the talk I gave at The Death Forum, a series of events in Manchester that look at contemporary conversations around death, dying and grief. Thanks to Sarah Unwin for the invite, and to artist Ellie Harrison, whose beautiful work was also presented at this event. This is barely touching the surface of a lot of thinking about what we will need to start preparing for as part of end of life care. Thanks to Team Changeist for the brain fuel/feedback.

If it’s not obvious, I spend a lot of time in the future, in particular, telling stories about them to figure out what they mean. In this case, I’ll be talking about the future of death, and how technology might enter into it.

So, I wanted to start this talk with a small story of a possible, potential, future, informed by some of the weak signals that are coming through the cracks, giving us signs of what might be to come. You may open the letter under your seat, read it when you are ready.

You are sitting in a room, in your house. You are older than you are now, maybe a lot more, maybe not so much more. You are nearing the end of your life, and you know that you are, you have been told well in advance by a series of health scans and monitors that started their long, slow, ritual months before today.

The fridge that you reluctantly bought on the advice of your doctor, that was once so good at stopping your midnight feasts, stops calorie counting and gives you what you would like, not what you need. It stops telling your doctor that you have had a lot of sugar today, but instead records onto its log, which will be read by your family after your death, that you enjoyed it, immensely.

The things around you start to burn out, break, and let themselves be damaged, because they are not needed anymore by you. They have reached the end of their intended use, and are not to be used by anyone, anymore. Their data is locked up, far away from where you can see it, eventually used by other toasters, and kettles, and coffee machines, so that they know when they should plan to break down for others in the future.

Somewhere, your children are arguing about who will manage your data estate, not knowing how much you have scheduled for permanent deletion, and who will have access to what. Their letter will be sent once the right conditions are met. Your son, whom you have not spoken to for twenty years, will not have access to any of your data, only some from the years before the argument. Your daughter will have all that you have left behind.

At the moment of death, the camera positioned to check up on you from well meaning relatives flicks from red to amber, indicating that it has stopped broadcasting to anyone but your GP. You were always aware your death would be hidden from your family and friends, to save them the misery, and that it would be wiped if it was anything sudden, or in this case, quiet and slow.

The house goes to sleep, the heating, knowing that you are no longer active anymore, starts to cool. As it receives the slowing data from your heart rate monitor, strapped fastidiously to your wrist, it turns the air conditioning on full blast. The house, given express wishes by you, only calls the ambulance once you are dead.

Slowly, your data is disappearing, day by day as the devices that collect and store it notice the inactivity, or just predict when it should stop. Only a few stores remain, your finances and your health scans that you promised to keep for your insurers. Finally, left only to a few, your photographs and meaningful locations collected over the course of your life are given to the ones you love.

As someone who looks towards the future, I can’t help but think about the things we haven’t thought will be a problem yet, or the things we are developing that might become important in our lives, and therefore important in our deaths. I like to think about the future worlds we might live in to see where these problems might lie, because as futurist and science fiction author Madeline Ashby said in her FutureEverything 2016 talk, ‘your utopia might be someone else’s dystopia’. The things that are right for you, might be devastating for somebody else.

I tell this particular story as a way for us to start thinking about death and our digital lives in a slightly different way, because the internet isn’t just webpages and social media, it’s now becoming things.

You’ve probably heard a little, or a lot, about the Internet of Things, but for those who don’t, this is the act of connecting things – toasters, fridges, sofas – to the internet, so that you can have a supposedly ‘better’ relationship with them and make them more effective and useful for you. I am, to be quite honest, an internet of things sceptic. There are places the internet should perhaps not be, but perhaps it’s too late for that now, particularly when you consider that on the list of things is an bluetooth enabled tampon. The internet making its way into our most private and intimate spaces, unbeknownst to who is watching.

But first, let’s look at death, and the internet, as it is now.

As you’ve probably heard, a recent study announced that by 2098, the number of ‘dead’ Facebook profiles, as in, those of people who have passed away, will outnumber those operated by the still living.

We’re perhaps one of the first generations to have some sort of awareness of an afterlife. Not in the clouds and pearly gates way, but in the fact that when we die, or when the people that we love die, they will go on to live, indirectly, through the digital traces they leave behind.

So what does it mean to know that you are leaving a version of yourself to haunt the networks you once lived with? How do we deal with this very specific kind of grief?

There’s the obvious, sad, presence of the dead on social media sites which no doubt many of you will have encountered. Asking you to wish a happy birthday to a friend that died four years ago, or your mother, hurts in a way that we aren’t used to.

The thing that has always freaked me out isn’t the reminder of birthdays, which is understandably jarring, but the smaller micro interactions, when you’re suggested something, a band perhaps, that they liked it too. It’s a strange case of affairs when a dead relative could accidentally market a specific type of soft drink to you. Suddenly, lots of hidden systems come into the foreground when the systems that you use day to day break, and create these ghosts. As in the case of Retaeh Parsons, a woman whose photograph was used to advertise dating on Facebook, months after her widely reported suicide, her friends and family baffled by the algorithm that Facebook’s third party advertisers had used to cause this to pass.

Facebook have made some concerted efforts to deal with this, for example, a memorial page can be set up for the dead by a dedicated ‘legacy contact’, once you have shown an obituary or newspaper article (which is open to a very unique kind of abuse). But often you don’t know to do that, because sometimes these process aren’t clear, which leaves you with this person, locked in time, forever blindly interacting with you.

Upon request, Twitter can close accounts and provide archives of public Tweets for deceased users. Family members are required to submit a formal request to Twitter’s Trust and Safety department, with Gmail, and Hotmail also requiring death certificates. However, Yahoo will not allow you access at all if a person has died, not unless it’s by court order.

You may have heard of the appearance of services that supposedly look to help you grieve by prolonging their memory, or becoming an immortal yourself, preserved in the great, undying, body of the internet. So I thought I’d take you through a couple.

DeadSocial is a service which will write and schedule messages as part of your ‘digital legacy’ after you’ve gone, contacting your friends from beyond the grave. From their website:

‘if you died of heart disease, you might schedule messages every six months reminding friends to get check-ups. You may leave specific messages for loved ones’ birthdays or for a spouse on your anniversary.’

Another site, Eterni.me, offers us the chance to be ‘virtually immortal’, feeding off our science fiction hopes of one day living forever, in whatever form, and in whatever body.

From their website:

‘What if You could live on forever as a digital avatar? And people in the future could actually interact with your memories, stories and ideas, almost as if they were talking to you?’

They want to preserve for eternity the memories, ideas, creations and stories of billions of people. Again, from their website: ‘Think of it like a library that has people instead of books, or an interactive history of the current and future generations.’ Something they call ‘An invaluable treasure for humanity.’

It all sounds very well and good from an archaeological point of view, but I worry when there is a paid, private, service offering this. Who are they to be the preservers, and how do we know what they will do with it? Whose best interests are actually at heart? What happens if they sunset their service, because though you might want to be immortal, a company’s business model may not.

Eterni.me might seem strangely familiar to many of you, as it’s similar to that episode of Black Mirror, Be Right Back, in which a dead husband is brought back to life by a service similar to Eterni.me, suggested to a grieving wife by her well meaning friend. Once this recently resurrected version of her husband is out of the box, in the most literal sense, his wife is rightfully freaked out, because no matter how much data she inputs, he will never actually be her husband. In the end, she locks him in the attic, occasionally visiting, perhaps because she cannot bear to see him die again, perhaps because she doesn’t want to forget him. But do we really want that, and who is actually benefitting with the creation of these services? Because if we are to be immortal, who are we being immortal for?

One of my main projects that I work on is Haunted Machines, a research project I started with artist Tobias Revell last year which looks at the proliferation of magical narratives and analogies in the way we talk about technology. We find these metaphors helpful because they often tells us much more about our our own anxieties, hopes and worries about change and uncertainty, and in this case, technology.

The reason I mention my work around magic is to draw your attention to a branch of it, spiritualism, because in some ways, this is what these services are. Back in the late 1800s, the practice of spiritualism became incredibly popular, particularly with the middle classes. These ranged from parlour games such as the ouija board, which was always originally a board game, to the much more serious, and more dramatic. Born from the enlightenment, when god and the afterlife were being challenged by modern science, people were looking for something beyond themselves. They wanted to talk to the dead. A medium, a channeller of the the dead, would be hired to bring the spirits into the room. It was a horribly exploitative practise, as many of these performances preyed on the grief and suffering of bereaved people, asking a fee for this peculiar and unique service. Chairs would be thrown, lights would switch on and off, and the medium would mutter, whisper, or scream messages to their desperate audience.

In the early 1920s, Scientific American announced a prize to any medium who could demonstrate telekinetic ability under scientific controls. Science and spirituality have never been far apart, ever since alchemy was once classed as a natural science.

On the judging committee was one of my heroes, Harry Houdini, famous illusionist and escape artist. Over the course of this prize, he debunked hundreds of faux-mediums, publishing stories about them explaining exactly how they’d done it for the public to read.

So what does this have to do with technology, and subsequently, the internet? The reason I find these kinds of stories so fascinating is because of their weird, innovative uses of technology to ‘summon’ the dead. One of Houdini’s biggest rivals in this competitions was Mina ‘Margery’ Crandon, otherwise known as The Boston Medium, who used an elaborate rig of bells and whistles to feign the appearance of her dead brother. Once Houdini had worked this out, she started creating increasingly elaborate contraptions to fool him, ending in a box with her hands, legs and neck visibly shackled while still managing to bring about her spirits. Houdini then recreated the box part for part and created the exact same response, rendering MIna’s abilities a very elaborate, though rather impressive, lie.

This exploitation of the bereaved through technology is not all that different to sites like Eterni.me, or that eerie service from Black Mirror I mentioned earlier. These developers and designers are no different to the Victorian spiritualists to me, in that they sell a false set of hopes to the recently bereaved, who just want to hang on a little longer. There is so much of us on the internet that it is so easy for us to bring back a version of a life, of a person, that will operate as if they had never left, but often only for the right price.  

One of the areas of technology I worry about the most is a group of technologies that I like to call ‘Means Well’ technology. These are devices, services, products that are designed to help us with sensitive things – anything from suicide, to sexually transmitted diseases, to mental health -, but so often end up failing, with devastating results, because they do not account for the very human, very unpredictable, and very messy ways that we interact with them. The key example of this is the colour changing condom, invented by well meaning teenagers for a science prize, which will change colour when it detects an STD. However, what it doesn’t tell you is how to prepare for this event, or how to react if it happens. It’s never about the technology, but the conversations and behaviours around these things that we think might be solved by technology. We endlessly create new things to make us live better and in this case make death easier to deal with, without properly thinking about how these technologies are changing our perceptions around the things we are trying to place a big, technological, sticking plaster over. In the end, other people’s technology happens to us. How do we have conversations around death when there’s all this technology in the way?

Which leads me neatly to our story at the very beginning, a very good place to start with these sort of things. In this story, I talked about a house connected to the internet in many ways, with the person inside subject to all manners of data collection, from calories, to movement, to body heat. This story is in many ways a utopia, and a dystopia, with ubiquitous, constant data collection balanced out by the subject’s ability to control parts of it. There are still squabbles over which family member gets what, and there is still a small scrap of dignity in a camera, that has had a crucial feature designed in by someone who thought that perhaps your family wouldn’t want to watch you die, but medical science would. In reality, the future does not look all that different to the past.

There are devices that slowly shut off, and then let your family know, something I modelled very loosely from the brilliant work of Networked Mortality by Willow Brugh, who studies and imagines the structures that we will need to help deal with your corpus and corpse, and distribute it to larger society at the time of your death. It helps the process become less scary, and less overwhelming with a very careful, discreet, and clever use of technology, using small triggers and a network of trusted people using technology rather than technology as saviour alone. It’s fantastic, and truly the best way of tech being used with actual human behaviour and emotions in mind.

In this story, data is deleted, automatically, once it has done its service, a theory I love from social media researcher Nathan Jurgenson, who has argued for the case of ephemeral data, data which has a shelf life and expires once it is no longer needed, or maybe once it has been seen, is then gone. There are more and more steps towards permanence made by designers and developers, with the cloud promising to store everything and never run out of space, to efforts made by certain parts of the web community for a ‘permanent internet’ which allows nothing to be deleted, and therefore nothing can ever ‘die’. What if we just let data have a life too and how long should that be?

I tell these stories of future possibilities because they are a way for us to work out the questions we really want to ask of the future, and to comfortably, or uncomfortably, rehearse some of the bits we aren’t sure of yet. At Changeist, we do this with designers, engineers, product managers, artists, curators, all sorts of people to help them see a little differently, often using objects that tell stories, like the letters I told you to open at the beginning, that although are mundane and far from the realms of science fiction, help you to embed it in the real, so you can start to imagine what it would be like to live in that reality.

We’ll still probably have letters in 50 years, no matter what techno-utopians might say. Many of these stories may never come about, but it’s a good way to push a subject to its limit, to better look back and see where things might need to be rethought.

There’s a trend in current innovation and design to put out things now and then deal with the consequences later, but I am telling you, an app update is not enough, not to a grieving family. But if we, and the communities that are currently putting out technology, told more stories, and imagined more possible, potential, probable futures, we might learn more about ourselves and the way we will react when things go wrong. So that you can better understand where you can step in and make a change, and be more ethical about the decisions you make.

I wanted to end on a quote by Anthony Burgess from a Clockwork Orange, arguably one of literature’s greatest dystopias, which I think best sums up this imagining of the future I’m talking about, as something that forever causes you think a little differently about the way it unfolds once you have conjured it into being, even for a moment.

“We can destroy what we have written, but we cannot unwrite it.”

 

The Babadook, Intervention Technology, and Designing With, Not At.

Warning: A few light spoilers for The Babadook, but I’ve tried really hard not to ruin it too much.

In Jennifer Kent’s rather remarkably terrifying film, The Babadook, a mother and son slowly regress into their house, away from school and family, held hostage (psychologically, emotionally) by a monster that has leapt straight out of a children’s picture book. An analogy for grief, and its subsequent consumption, the monster, the Babadook, lingers in the house, growing stronger with each denial, more fearsome with each rebuttal. Grief can turn a home into a dark, inhospitable place, left open for monsters to occupy every cupboard, every shadow, every dark and stormy night. As the small, compacted family are forced inside their house, the outside world is less visible, because the world has almost definitely forgotten about them. For many, their grief is too much to deal with, and it’s this loss of control that is the most frightening part of the narrative.

As a film that looks at how paranoia, grief, and desperation manifests, The Babadook is excellent, there is no unnecessary gore or jump tactics (as many reviews have highlighted, with a collective sense of relief) but rather a slow unraveling that ultimately leads to a rather visceral, human climax, with a monster, of various kinds, overwhelming the house. This isn’t a film about the supernatural at all, it’s about people.

At the heart of The Babadook is the focus on the things that we don’t talk about, or don’t see. Kent’s film is rather sympathetic of the social services, but not the unhelpful schools that misunderstand Samuel’s eccentric behavior as disobedient, rather than bright (a story familiar with many), causing the family to be further isolated from the world around them. Adding to that a sister that is more concerned with how she’s perceived socially than to care about her overworked, emotionally fraught sister and you’ve got a recipe for disaster. Aside from thinking about how grief can be the monster in the basement, The Babadook looks at the people who do fall through the cracks, into the basements of the world, never to be seen again. How we see these people, and how we find ways to reach them, is as important a question as it’s ever been, and one that we will eventually want to use technology, potentially, to solve.

Recently there’s been a lot of controversy and criticism of The Samaritan’s app, Radar, and rightfully so, as the app’s core function is to monitor the people in your twitter timeline for key trigger words and phrases, which, on identifying them, alerts you that this person might be in trouble. The conversation surrounding this has raised necessary discussions about what intervention is, where technology should, and shouldn’t be used, and a whole multitude of issues of consent, surveillance, and online communities. Radar is intrusive, and although it’s essentially enabling peer-to-peer surveillance and gross misunderstanding, there’s a reason why Samaritans thought it should exist. They were trying to do a good thing, in a bad, misguided way. Stavvers wrote an excellent summation of why she wants it pulled, for the very specific, very important point that not everyone will have your best interests at hand, ‘not everyone is going to be operating from a position of good faith’. When you’re down, that’s the time for your enemies to kick the hardest, and by accidentally facilitating this, Radar hands the power to those who know exactly how to exploit it.

The Samaritans, who do a spectacular job, saw technology as a way of stepping in before something bad happened, because sometimes it’s hard to tell the warning signs. As I mentioned earlier, in The Babadook, Amelia’s family are barely there, and when they are, they are too wrapped up in the apparently complexities of their own mediocre dilemmas to even notice, or take action, when a cry is heard. So, rather clumsily, Radar is trying to respond to that need to intervene more quickly, more effectively, albeit with an added dose of emotional distance and obligation (see Joanne McNeil’s piece of Facebook adding a layer of obligation to our everyday interactions for an interesting perspective on this). Like many IoT devices, this interaction runs the risk of being yet another thing that we can ignore, or get bored of.

Radar, as a means for intervention, is a key example of techno-solutionism, and not designing with people, but rather at them, without fully anticipating the full set of consequences or problems that could arise, as Stavvers mentioned, this is almost perfectly designed for trolling. In Dan Lockton’s excellent essay ‘As We May Understand’, he stresses an important problem with IoT innovation, that we are seeking to correct, or change behavior, rather than working with people to know what they actually want, designing with, not for:

‘People (‘the public’) are so often seen as targets to have behaviour change ‘done to them’, rather than being included in the design process. This means that the design ‘interventions’ developed end up being designed for a stereotyped, fictional model of the public rather than the nuanced reality.’

For devices that do intervene, or help, Dan suggests ‘helpful ghosts’, stone tapes that provide ‘ambient peer support’ through pre-recorded messages, triggered by a specific series of parameters, thrown carefully into a customised recipe using something like If This Then That. On the surface, this sounds vaguely like Radar, but there’s a hope in this, that it is tailored to the individual, by another individual, and isn’t invasive or awful. The Anti-Clippy (which Dan points out), if you will.

As we look for more ways to make convenient our daily lives through connected objects, we’re almost certainly going to see more in the way of intervention devices. I mean, they already exist, take Glow for example (thanks Meg Rothstein for alerting me to this), a pregnancy app that allows the pregnant person to add their partner to the app, and using the recorded data, sends prompts to make their pregnancy more comfortable. ‘Your partner has recorded that they aren’t feeling too good today, why don’t you get them some flowers?’ What the app doesn’t know (because it doesn’t ask) is that your partner might hate flowers, or is allergic, and might just need a hug, or to be left alone, but this layer of obligation prompts you to be kind in a way that will never feel genuine, because there’s not enough of your relationship there, it’s not personal, or made with you.

What does the future look like here if everything becomes an obligation? Where can we look beyond, to where intervention could be helpful? One of my immediate thoughts was applying this to older people, who might not have left the house in a while, where a gentle nudge to a nearby designated person can let them know to drop them a line. In The Babadook, this comes in the form of a friendly neighbor, who although is at first pushed back, eventually is let in, and in some ways, becomes the subtle, ongoing hero of the story, beyond the close of the film. It’s certainly a level of obligation, but in some way it’s not masking as something else (such as romance, with Glow, or suicide prevention, in the case of Radar), because we do need reminding sometimes. As always, comments welcome.