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What More Can Be Done?

In April 2014 I attended the 1st Death Online Research Symposium ( = DORS1) in the UK, as an attendee only. You can read about my experience here: 1st day, 2nd day

The 2nd Death Online Research Symposium took place in August 2015, also in the UK, and this time I knew that just being an attendee won't be enough for me. I also knew that I won't be interested in speaking about a survey or a paper, nor would I be interested in holding a panel and merely discussing things - fascinating as that may be. I'm a practical person, and I wished to come out of this opportunity of being surrounded by digital death experts from all over the world with - hopefully - something practical at hand. So when the call for papers for DORS2 came out, this was my somewhat unusual submission: 

Digital Death and us: WHAT MORE CAN BE DONE? - A Roundtable Session

In 2013 an online survey titled "What Shall We Leave Behind?" was held, regarding the digital legacy we and our loved ones shall leave behind. Some of its results were presented in a paper titled “Online Legacies: Online Service Providers and the Public – a Clear Gap“ (2014, Tzezana & Shavit). The paper focused on the current gap as portrayed through the results of this survey between the wishes of families of modern deceased to gain access to their beloved ones' online legacy posthumously and the websites, platforms and online service providers' policies and practices in this regard. 
The unique opportunity of DORS 2015: Death Online researchers and experts of various disciplines gathered together at the same time and place could be used for sharing ideas and knowledge. A brainstorming regarding what more can be done? - practically and in all sectors: business, governmental, private, non-profit: raising awareness, finding solutions, creating a change. In the previous symposium Astrid Waagstein shared a Danish solution in her presentation which was un-known to most of the attendees and curiosity arises towards the possible outcomes of the next symposium. The suggested format is: 
  1. An oral presentation by Vered (Rose) Shavit (15 minutes): 
  • Detailing existing Digital Death issues, difficulties and dealings, including a presentation of some of the results of the survey and paper. 
  • Presenting existing solutions. 
  • Presenting ideas for future solutions. 
  1. An active audience-participation-based roundtable session aimed at sharing existing solutions and suggesting new ones (30 minutes). 
  1. A clear conclusion of this brainstorming's outcomes, hopefully providing all symposium participants with ideas that they can take home, and perhaps utilise to bring the wings of change to their various communities and countries of origin (15 minutes).  

I was very happy when the committee of organizers accepted my submission. 

I wrote about the first half of this session as part of my summary of the 1st day of DORS2: you'll find there pictures taken during the session and the video of the first part of the session: my presentation of the subject.
In a very rare case for me, I've decided to also share with you the link to my Prezi presentation, the one I used during the first half of this session.

You can find my summary of the 2nd day of DORS2 here

I couldn't attend DORS3 which took place in Denmark in March 2017, but I did write a brief description of it, you can read about it here.

DORS4 will take place in the UK in August 2018, the call for paper is out, you can read about it here

Since I came back in August 2015, the materials I gathered during the second half of this session lay in wait, waiting for me to summarize them. This journey wasn't easy for me, neither emotionally (the symposium was held during Tal's 60th birthday) nor physically (as I was travelling on a budget, it turned out my flights and accommodation during my stay in the UK were extremely uncomfortable), and I traveled alone. I came back drained, exhausted and weary, and I just put all of these materials aside then, and since then. 

DORS2, UK, August 17th 2015 

DORS2, UK, August 17th 2015 

Now, before I retire, it became very clear to me that I wish to re-visit those materials and sum them up, so they will be publicly published. I thank Ronit Lavy, Guy Sharett and Michal Adam for helping me bring them to light, as I've had very little time I could dedicate to this right now. 

I thank all the DORS2 attendees who participated in this session for their generous sharing of their ideas, knowledge and expertise. 

What More Can Be Done? 

After I presented the existing solutions I’m aware of, and the not-yet-existing solutions I came across or thought about, all the attendees were divided into smaller discussion groups for a “round table” session, in which I asked the people in each group to both share with each other which Digital Death solutions they are already aware of, that perhaps the people around them are not yet familiar with, and to suggest new Digital Death solutions that do not yet exist, or have not been implemented yet, and hopefully, possibly, could be, would be.  

Afterwards, a representative from each group, from each table, shared with the entire room what they came up with. 

In some groups more question marks or debates surfaced than the practical solutions I was aiming for / hoping for, but that was fascinating in itself, and in a way, perhaps not surprising: I realize that as academics some of the participants focus more on generating discourse and raising ethical questions rather than seek pragmatic solutions. 

The most repeated words around the room were “Education” and “Awareness”:
One group wondered how young do people need to be in order to learn about Digital Death issues, and their answer was: pretty young. An education about the value of digital assets and of digital value should be taught from a young age. 

“There are some lovely children’s books about understanding deaththose could also be about understanding what it means to be online and what it is to die online”. 

A need for better digital literacy was mentioned, and existing educational projects like Barclay’s Digital Eagles in the UK, which helps people build their internet and computer skills, were mentioned as a possible solution: to have Digital Death issues taught as part of it.
A “Digital Eagle” trained 2,100 nurses to use computer tablets, for example (nurses will be mentioned soon by another group as important agents) – the “eagle” could have just as easily raised Digital Death issues while she was at it. 

In other examples, the “Digital Eagles” teamed up with “The Abbeyfield Society” charity or the “Friends of the Elderly” charity and hosted series of free iPads and laptops sessions with senior citizens: another classic option for teaching about Digital Death matters while they’re at it. 

Barclay’s Digital Eagles in the UK 

 Barclay’s Digital Eagles in the UK 

General question marks mentioned in these regard were: “Who are the educators / awareness raisers? Why? Who needs to be reached? How?”

Possible general solutions mentioned were: “To include Digital Death education in schools and colleges”. 

Another group mentioned the need to promote Digital Death awareness through acceptance of death, as once people are more willing to talk about death in general, they will also be more willing to talk about Digital Legacy in specific. The fact that we live in a death denying society acts as a barrier in Digital Death matters. 
Collaboration with “Dying Matters” as an example comes to mind, as they “Aim to help people talk more openly about dying, death and bereavement, and to make plans for the end of life”, and they hold an annual “Dying Matters Awareness Weekall around England and Wales: raising Digital Death awareness could easily be implemented into it. 
Another possible collaboration and / or a source to learn from about how to overcome such obstacles mentioned was learning from organizations promoting organ donations.  

 Michael Jordan promoting organ donations in 1994 

My humble suggestion based on that campaign 

Regarding the many Digital Death solutions which already exist, some in the form of phone applications, one group rightly stated that: “in order to use these apps, the person has to first be aware”. 

More general wishes as “To raise awareness through education” and “To take a more global approach in education” were also mentioned.  

Another facet of awareness was raised by another group: 

“We spoke a lot about Terms & Conditions and then we took a step back: instead of waiting for a crisis moment to arrive, we should start by becoming more aware of what we share, when we share it, why we share it, with whom we share it, what we want that to be and what our values are, to begin with. 
We see raising Digital Death awareness as part of raising digital awareness and digital sharing awareness, especially in relation to privacy
Perhaps the order should be to first raise digital awareness and Digital Sharing awareness – and then to raise Digital Death awareness”. 

Turns out awareness isn’t enough, though. One group said: “We spoke about awareness: all these people, like us, who study about Digital Death - none of us around this table have made an actual will, not to think about how many of us made a digital will”. 
I was very much surprised – and a little alarmed – to learn this, so I asked all the attendees to show by a raise of hands who has already taken care of their Digital Death, and I was dismayed to see those of us who did were the minority! 
The group said: “It’s a question people don't want to think about if you are healthy - even if you are researching these topics”. 

Another angle mentioned by more than one group was being part of larger issues, to think about a global scale. One of the groups said: 
“We talked about the digital ethics stuff which is happening at the moment. Things like the Magna Carta for the internet which Tim Berners-Lee is working on and the Southbank Center Web We Want Festival (2014, 2015). Talks about Digital Citizenship, or: what are we in the digital era? Are we digital citizens? Are we digital consumers? Are we Digital Accessers? And the kind of debates that are brought out from that. 
People are thinking about human rights and what our human rights online are: the death debate should be involved in this. We need to not only look for, or focus on, existing solutions, but also to raise question marks of how do we fit in into those existing solutions, and create more spaces for collaborations”. 

Southbank Centre, UK 

Southbank Centre, UK

Another group expressed a wish for Digital Death legalization on a global scale, with strict instructions that have been adopted by governments, clear guidelines for organizations and a clear understanding of how Digital Death solutions need to be performed, with options made very visible. “There’s no automatized legislated system that takes care of all that’s left”. 

Another group mentioned that when we aspire for global solutions we ought to take different cultures into account: in certain cultures privacy might carry a heavier weight than family bonds, and vice versa, which might create cultural tensions, so culturally specific guidelines will be necessary. 

The next step was, naturally, the mention of corporations and companies: 
“We spoke about corporate responsibility for data management and about companies that should be held responsible for their dealing with Digital Death matters and for their outdated Terms and Conditions.
They still think of the user as an individual, instead of a relational user: it’s not an individual sharing data just for themselves! They need to start thinking about relational users rather than individual users, and to start using dynamic Terms and Conditions in consequence.

Which bring us right to the next quote: 
“There’s also the question of monetization of personal data, because we’re not receiving a service from companies like Facebook: we are their product and they monetize us. Therefore, whenever we talk about and suggest new solutions, we have to be mindful that we are a product being sold”.

A concern raised about all of this was: keeping pace with change

Another key element mentioned several times was simplicity, here are some quotes from various groups: 
“We were talking about policy and law being third level, which takes a long time to access, then education being middle level: it takes a bit of time and we're working towards these things – but we need really short term and immediate solutions that people can just implement very easily”.

 “Things need to be easy to do. We were talking about the Apple Keychain, how Apple automatically offers you to save your password: why doesn't it also offer you to save it into a safebox as well, for example? It's a really simple thing: an extended keychain. Every time you enter a new password, it can automatically get saved somewhere where people can access it later (If that is your wish, of course)”.

“We talked about individuals having the right to decide what happens to their data, so when we sign up to an account, choosing it’s fate in case of death should be a default. As soon as we sign up to an account, we need to be asked. We already consent by default to so much – this should be our choice”. 

“One of the key elements is simplicity, in order to change something it needs to be very straight forward, it needs to be very simple and accessible for everybody. We saw some documentation that the Swedish government started taking care of Digital Death matters, but it doesn’t look very accessible, not to everybody. And if it won’t be simple – it won’t be”. 

Another issue raised was finding the right educators or agents (including the afore mentioned nurses):  
“We were talking in terms of education about who are we educating, who are the gatekeepers of education. In the project we learned about last year from Astrid Waagstein, taking place around hospitals in Denmark, the idea there was that the nurses were the educators, so when you inform the nurses, you reach a much wider network. We need to identify those gatekeepers in the various different industries, that would then be able to inform the rest of the industry or a wide range of people”.

 Astrid Waagstein in DORS1, UK

 Astrid Waagstein in DORS1, UK

Another group phrased this as:
“It’s very important to identify the right agents, whether it’s care-givers or nurses, or people that are working in places with close approach to death and dying. If they will be aware of the existing Digital Death services, they could forward that knowledge onwards. In some cultures it’s very common - in the US, for example – to make checklists and bucket lists. What you’re choosing to prepare before you’re gone could be – should be – part of such lists, including Digital Death matters. Which brings us back to the need for simplicity: digital instructions should be part of such lists, and simple”. 

Their mentioning of a checklist brought to mind the following website with it’s unforgettable name: “Get your shit together”. It’s just such a checklist, created by a widow after the sudden and tragic loss of her husband. 

(Oh! I’ve just entered the website again for the first time in a long while – they are now called “GYST” , has a different look and has more than just checklists) 

Several groups came up with ideas of what is perhaps missing:
“Key issues in order to change will be people’s need of more inspiration and more support. We think in order to promote such a change, there will be need of a service supplying online support groups. You'll be able to choose your relevant support group and there be able to understand more and learn from others - without getting too exposed to people who will not understand what you’re doing or looking for. Support groups specifically for managing your digital legacy and your Digital Death”. 

“We talked about how are you going to identify content to delete: do we need an executor role, or something which automatically deletes all the “crap”, leaving only the precious stuff for people to inherit behind? Do you need a professional editor of your life, either before or after your death?”

“What I think is precious or my kids think is precious may be totally different. Having a cleanup version, a “detox” - we’re gonna get different perspectives on what’s valuable. We should have a delete / cleanup / detox option”. 

Other aspects to be considered are ethics, privacy, and the right to be forgotten
“We thought about this as kind of an objective: getting access to material such as Digital Legacy” is actually a colonialization of death, of memory and of posterity as well”. 

“There are already so many various solutions, which got us thinking about ethics: why should people have access to that material? Maybe there is material that you really don't want to see. You don't want to know your loved one that well. You might not like what you see. It also depends on is your intention to delete accounts or materials that is a different objective in itslef? Or is your intention to preserve, to redistribute, to share, to print? Each one of these issues has different dilemmas”. 

“There is lots of material all of us around this table have that we think shouldn't be shared with our loved ones: we have the right to privacy and we have the right to be forgotten”. 

“It depends on what you want to have access to: is it social media? Is it finances? Is it your photographs? Your work? That should be sorted out first: what sort of material do you want to have access to?”

Question marks mentioned in this regard were: “Do we really know our loved ones? Do we wish to delete or preserve? Do we wish to be deleted or to be preserved? What material should your loved ones have access to?”

“One of the obstacles about sharing personal data by someone who’s been deceased is the bidirectional nature of communication. I can reasonably give consent for my next of kin to hear what I say, but you’d need to give consent for them to hear what you say. In the old days you had a box of letters sent to the person who died, so you see only the voice of the sender - but now we might get both the voice of the sender and of the receiver of messages. What happens then? It can be quite tricky” 

“You don’t choose how you are remembered, so no matter what the medium will be people will remember us as they choose to”.

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