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Updating Bereavement

Next week I will attend "Loss, Bereavement and Human Resilience in Israeli society" - a three days conference in Eilat, Israel, as a speaker in one of the sessions (website in Hebrew, document in English). 

While I'm reading the online booklet (Hebrew only, sorry) containing the abstracts of the many workshops, lectures, posters and symposiums taking place there, I am overcome by a powerful desire to physically grab these professionals, academics, personnel, clinicians, researchers, policy makers etc., by the lapels and shout at them: Wake up! - you have to stay updated if you want to remain relevant. 

The speakers divide the bereaved into many sub-groups: "Families who were subject to a euthanasia offense", "Bereaved siblings", "Bereaved parents", "Widows of the Defense Force", "Mothers of teenage orphans", "Bereaved girlfriends", "Orphans", "Widows of the Military system", "Orphans due to a terrorist attack", "Bereaved teenage siblings", "Bereaved mothers", "Families whose member committed suicide", "Grownups who lost both parents as teenagers due to a terrorist attack", "Parents who lost a son in war", etc. 

I understand the need to research and/or support each sub-group according to its needs, but there is one subject that connects all sub-groups and is relevant to them all (financially disadvantaged populations excluded, as they don't have computers nor Internet): all of these people will have to deal with the digital legacies left behind by the dead, and as the years progress, the volume of these legacies will only rise. 

The following image is by the Australian company Life insurance Finder, from their great 2012 infographics Step By Step Expert Guide To Protect Yourself Online Before You Die

How much of our history is digital? For people who are 65 years or older, 12%. For teenagers, we're already at 86%, and this data will rise as the younger generation, who grew up with a screen in front of them and a mouse and keyboard under their hands, will become adults. 

Which means that by now, all people who experience loss, grief and bereavement, regardless to which sub-group they belong to, will deal with digital legacies and the emotional, technical, ethical, philosophical and legal hardship and complications those bring. I worry that there is a disproportion between the need of such support and the awareness of the subject, not to mention the qualifications required (technical, spiritual, etc.) that are not yet acquired. 


My notes during Digital Death Day 2012

Digital Death Day unconference was held in London in October 2012. These are the notes I took during it. More pictures can be found here

The day was divided into four time segments. Two discussions were held at the same time during each segment, and each attendee chose which one to join. Since it was an unconference, we suggested the topics for the sessions and their order on the spot and not in advance. The full agenda is available here

For the first segment, I joined Andriana Cassimatis's session: "Announcing Death and Mourning online - how to strike a personal / useful balance. Do we use technology to replace the act of togetherness or do we use it to facilitate it more effectively?

Stacey Pitsillides (left) and Andriana Cassimatis (right), 
co-organizers of Digital Death Day London 2012 

Group discussion: 
"How do people announce death online? In the US, a wake or a funeral is usually held after 3 days. In Israel, it can be held the same day, or the following day at the latest. If you use technology in general and the internet in specific, it will be very efficient, but will it be personal enough? 

What if you need to let friends and family know the details but don't want to pick up the phone? Is it OK to notify them via email / Facebook? If people are sending online invitation to a wedding, why not to a funeral? Is it OK to let certain communities know online, while others will still require a phone call? Do the answers to these questions vary according to geographical locations? or according to religious beliefs? Will conservative Christians refrain from posting such things online, for instance? 

How would you feel if you learned of a death through Facebook? Will you comfort / console / pay your respects through Facebook? Through Twitter? If we send virtual condolences, will less people attend the funeral / wake / seven days of mourning (Jewish tradition) in person? 

If we send our condolences through our online presence rather than in person - is it personal enough? Are we reaching through thanks to technology, or are we hiding behind our computers and remaining isolated? Are we expecting more of technology than we do of people? Is technology bringing us closer together, or making us feel more alone? 

How would you feel if you were invited to a funeral / wake through a Facebook event? Where do we draw the line? Will there be virtual funerals? Will there be live streamings of funerals? Will there be a funeral on skype? Will there be ads next to it? 

Will people keep going to funerals in person? Will broadcasting a funeral cause less people to go to it in person? Will people feel more distant? Or will people who can't attend the funeral feel closer, that they were able to at least attend virtually or view it while it was taking place? 

What is acceptable? With what will people feel comfortable? Is there an existing such format, or is there a need for developing a new format? 

What if the death is sudden, and the family is upset and haven't thought of a ceremony in advance - they would wish to "fall back" on the default, and there isn't a default yet. 

Will Google display death related ads, such as funeral homes, if you were to write the word death in an email in gmail? 

In Ireland there is a tradition of sending a proxy to the funeral in your name if you can't attend it in person. The proxy attends the funeral / wake in person in your stead - regardless to whether or not he knew the deceased. Is virtually attending a funeral / wake like sending a proxy of yourself to it?". 

For the second segment, I joined Yiota Demetriou's session: "Unstable Timeline (Identity on Facebook), Mourning on Social networks"

Group discussion: 
"In Cyprus, people change their profile picture to a black square when in mourning. 

The movie Never Sorry, about the famous Chinese artist Ai Weiwei, tells how "After the 2008 Sichuan earthquake, Ai used multiple media — art installations, video documentaries, Twitter — as he persistently investigated and questioned the official party line on student casualties... ... Ai continued to tweet and make works about China's lack of transparency..." (quotes from here). As a way to contradict the low, unrealistic number of earthquake victims the Chinese government publicly admitted, people used twitter: they collected names of dead people in each village and twitted that information on, to create a bigger picture. 

Self commemoration, self documentation: Yiota, for example, hasn't had a diary since she was 12. She does have an archive of herself, including audio recordings. 

Do we need QR codes on gravestones? We don't really know the deceased, what will more information about then mean to us? Isn't it better to have a bit of a mystery? Will it lead to 'grief tourism'? Is it one of our ways of trying to achieve immortality? Are we using technology just because it's there, or is it truly of service to us? 

Is there a point in trying to commemorate ourselves for future generations who never met us and don't know us? Our bodies deteriorate when we die - shouldn't our memory deteriorate with it? Our body will gradually no longer be - perhaps our data should gradually disappear too. 

Once people die, there is no new information regarding them, so the old information will be displayed on 'repeat', in a 'loop'. How will that affect the way we remember them? 

Some people are now buried with their mobile phone, so their loved ones will be able to text them whenever something of significance takes place, among other reasons. 

What happens to our online assets if the servers fail? What are we left with then? What will be left of us? 

Amazon erased George Orwell’s 1984 book from kindles of people who have purchased the book - or so they thought. To which virtual, digital and online assets do we actually hold the rights to?". 

During the third segment I initiated my own session: "What can be done that hasn’t been done yet?"

Group discussion: 
"Managing our digital legacy: can we learn from the Opt-in vs. Opt-out options regarding organ donors signing up? "Germany, which uses an opt-in system, has an organ donation consent rate of 12% among its population, while Austria, a country with a very similar culture and economic development, but which uses an opt-out system, has a consent rate of 99.98%" (quote from here). At the moment, few people manage their digital legacy, because it's an opt-in system. What if whenever you registered to an online service you would have to tick a box, just like you have to tick a box confirming you read the "terms of use", only this box will be about what would you like to happen to this account if something were to happen to you? - thus, changing the situation into an opt-out system. Just like we are asked to change our password periodically, we could be asked to confirm our choice of what were to happen to that account (deleted / access granted to person X via email Y / etc.). 

Kalyia Hamlin thinks this might be achieved, and the way to get it done will be to 1. make this technically possible, 2. offer companies to use it since it already exists, 3. encourage people to use this option since it is already being offered to them. She will spread this idea around OASIS-IDtrust and see what she can come up with. 

Another option is to have an online survey between internet users, and ask them: "would you like to have such an option?" If the results are positive, to approach internet companies such as Twitter etc. and tell them "This is what the people want, please implement this option into your system". To have a campaign in this regard. 

Perhaps a lobby is required: to address governments and demand law enforcement on digital legacy management. 

Other issues raised in this session were to go into the school educational system and implement digital studies into it, which will include taking personal responsibility for your online actions and assets. 

Another direction in need of further looking into is the ecological and environmental Implications of digital and virtual death (and/or digital and virtual life after death). 

Ann Cavoukian and her concept of "Privacy by Design" were mentioned, but I'm afraid I didn't write down the context - please feel free to remind me!

I'm afraid I didn't take any notes during the fourth segment, Stacey Pitsillides's session: "The future of digital death day? What is next for this community?"

These are only the notes that I personally scribbled during the sessions and are not an 'official' summary. 

I wish to take this opportunity to thank Stacey Pitsillides and Andriana Cassimatis for co-organizing this day, the wonderful people who crowdfunded my tickets into this unconference and Debbie Davies and Kate Bissell for their interviews during it.