Death: A Festival for the Living

This weekend I travelled down to London to be part of a festival at the South Bank Centre. 

“This festival celebrates something we all have in common. Death is a subject we are fascinated by and fearful of; it is a favourite topic of all arts and all societies find rituals to deal with it. But most of us ordinary mortals find discussing it quite tricky – even though the more information we have about it, the easier it is to face. This weekend is not about morbidity, sentimentality or sensationalism. In fact it’s a weekend full of delight and humour. It’s about hearing the powerful stories and surprising facts from people who have had to sort out practically and emotionally how to face up to the greatest and most challenging of all certainties.”

Jude Kelly, OBE, Southbank Centre Artistic Director

Where to begin? I was utterly fascinated by every single person in the audience. I sat in audiences made up of every age, race and character. But why a death festival? Lemn Sissay, Associate Artist at the South Bank Centre, started to answer that question for me by reciting some of his poems. Invisible Kisses  raised enormous applause and was the one that really touched me.  He asked all of us why we don’t celebrate crying and where do we go to cry? Jude Kelly set the tone of the weekend by sharing the loss of her son to cot death, her openess was admirable and I really believed her when she talked about why she wanted to curate a festival of death in the first place.

What’s the one thing you’ll do before you die? People shared their new year’s resolutions, pledges and life-long dreams on a giant chalkboard as part of an on-going international project by artist Candy Chang.  This was so simple yet so effective. I loved coming in on the Sunday to see it blank again and watch it filling up over the day. I was amazed by the range of statements on it – everything from ‘become a farmer’ to ‘loose weight’. This is a classic example of a what Snook call “generative design techniques” that are used to connect, innovate, make, tell and share. Generative tools must be useful and usable for all types of people and it doesn’t get much simpler than a blackboard. Tools like this provide a design language for everyone, designers as well as non-designers, to provoke imagination, stimulate ideas and stir emotions and Candy Chang is superb at creating them on a large scale.

Sam Winston created a pop-up registry office, commemorating the quarter of a million people who are born and die in the space of 12 hours around the world. I drew circles to represent my loved ones and register their names in writing. The reason this worked so well was the fact that unlike the blackboard it didn’t really have any emotions attached to it. I read a whole wall of names, but they were just names with no messages or personal anecdotes and that made it work. I liked that they focused on birth as well as death. Although projects similar to this sometimes feel a little self indulgent this one felt it was in the right place at the right time.

I went along to a death cafe, described as a “good old heart to heart and a nice slice of cake”. By a chance twitter meeting I discovered one of the girls who was sitting across wrote a detailed post about the experience ( we were advised the session was confidential but the post does give you a feel for what it was like ) I was intrigued by the funeral director who spends his time taking photographs of funeral shop fronts as they are so out-dated and in-humane. I think the concept of death cafe is brilliant and the idea of a pop up death cafe lends itself well to Start Up Street Stirling.

“Overall, the discussion was disjointed yet eye-opening. Even with my limited experience of death and loss I found it fascinating. Understandably, I don’t think it’s a subject most people want to dwell on all the time and I can imagine people thinking that it’s a strange way to spend an afternoon. However, in a forum such as this and made cheerier with tea and cake, there is no reason why we shouldn’t be more open and progressive about discussing  a universal subject which remains something of a taboo in our society. Death Cafe has plans to branch out from their Hackney home and encourages people to hold their own meetings. So if you ever get the opportunity to attend one of these dark tea parties, I urge you to give it a try. You’ll be almost guaranteed to meet a weird and wonderful selection of people and it’ll certainly give you food for thought.”

‘Gone but not erased: Digital Death’ was led by PhD student Stacey Pitsillides, she talked to us about what happens to our data after we die. She is also involved in Digital Death Days – which I’m interested in too. I must admit I was disappointed in this session as a lot of questions were posed but no answers or alternative solutions were shown. I follow Stacey online and didn’t discover anything I didn’t know already but I think the questions she is asking are highly relevant. For example, do I need a will for my digital self ?  Will all funeral homes follow the example of Conley Funeral Homes in Ireland who live stream funerals for relatives who can’t be there in person?  Of course my data is part of my digital personality so I wonder how my family and ( offline )  friends would know who I love and respect in my online world? In the past when someone died their relatives sort out their home and all their belongings, now the same thing has to happen to our laptops and our i-phones? It’s a fascinating area and it looks like the place to be connected to around all this stuff is Digital Beyond . I wonder if Facebook and Twitter are thinking about formulating death policies?

Meghan O’Rourke talked to an audience about her memoir ‘The Long Goodbye’ which is a profound exploration of the nature of grieving. She wrote the book after her mother died from cancer at 55. I am in awe of her story and her openness. She talked about grief in a way I have never read about or heard before – so real and raw. The reality is that we don’t know how to behave when someone dies – no-one shows us or tells us – it is the one experience that unifies us and such an opportunity for connection – is a sympathy card the best we can do? Meghan talked about the work of Kevin Young and shared beautiful snippets of poetry that helped her face her grief. Isn’t it curious that our society is somewhat comfortable with mass grieving for people we don’t personally know but we find it so difficult to be open with bereaved people we do know.  Meghan introduced me to the concept of anticipatory grief – something that happens when you are told a loved one only as a certain time to live. This also happens when loved ones are diagnosed with long term conditions as their families grieve the person they were before the disease.

Over one million people die by suicide every year, and there are an estimated 15 to 20 million attempted suicides every year worldwide. I went along to “Suicide – not waving or drowning” to listen to a panel of experts talk about the causes of suicide, the effects of suicide spots on local communities and how different cultures and religions view suicide.  Film maker Jez Lewis showed us his film ‘Shed your tears and walk away’ and I was shocked to learn that the police and the NHS boycotted the showing of the film in the local area. I have read about the idea of suicide becoming infectious in The Tipping Point but watching this video reinforced the fact that the more people you know who have committed suicide the more it becomes an option – it becomes the norm. Statistics really matter when it comes to suicide mainly because they don’t reflect the truth – five people on Jez’s street had committed suicide yet the statictis didn’t show anything abnormal. Also, statistics don’t break down suicide by race or ethnicity which is important when 75% of those who commit suicide are men.  The language around suicide is also topical because people find the word ‘committed’ offensive.

Rosetta Life  presented a series of short films made with people with life-threatening illnesses about the things that matter most ; stories of cancer, self discovery and truth that go to the heart of pallIative care.  They showed a wonderful film of a lady dancing with the hands of a man with a neurological disease. He told the camera “Movement keeps me in relationship” – there was something so powerful about these films around the intimacy of touch. It seems at the end of your life touch becomes a clinical thing but touch is so important. Touch and intimacy in health is an area I want to know more about as I think it could add so much value yet we shy away from it – even when we are healthy! I am looking forward to the book Cassie Robinson is curating,due to be published in Spring of this year, with 14 authors, discussing the practice and experience of intimacy and vulnerability in different aspects of our lives, and how empathy scales in public services. Death is surely one of the most intimate experiences and yet often happens in a clinical situation.  We were shown an incredible film commissioned by Labour peer and political strategist Lord Philip Gould, who died in November 2011. There was a part of me that watched this thinking of the people who could never afford to have a film made or a story written about them before they die – yet so many probably could if they were shown how easy it was using flip cams, wordpress and the like.

This event was most definitely one of a kind. I met some fantastic people such as Dr John Troy from the Centre of Death and Society at The University of Bath , chaps from the service Tell Us Once, ladies from The Samaritans and the folks from Dying Matters. It was great to meet people who were enthusiastic and keen to listen to my ideas and share their stories and experiences.

I can’t wait to see what The SouthBank Centre are going to do next in the space and I really hope they step up to the mark in terms of doing something really worthwhile and meaningful. Jude Kelly shared a little of the feedback she had got so far – next time people want to talk about survivors guilt and accidental murder ( of course the latter evoked a reaction ) maybe by then someone will have developed a ‘Kill My Facebook’ app or death will have become a disease that is curable.

To give you an insight into the scale of the conversation, here are some figures from #deathfest.

“500 tweets generated 829,478 impressions, reaching an audience of 143,340 followers within the past 24 hours”

I can say with absolute confidence the Death Festival has made me think differently and taught me things about the world and myself. Now I feel it is my responsibility to share my experience with all of you and I want you all to ask yourself two questions:

1: What do you want done with your body when you die?

2: Have you told your next of kin?

Asking these questions can open us up to really human and loving conversation.

Snook are working with Cassie Robinson to determine how we go about  making a difference in this space. This weekend’s conversations confirmed our thoughts around the massive need for people-centered thinking around end of life services. There are several areas in particular such as the transition between paediatric to adult care, the learning about death in education and the absolute basic need for practical information. There are also issues and problems around the role of intimacy in health and and how services are joined up, after all there is no shared languages or rituals. And of course it isn’t all about services or design, but the fundamental human nature of it and how we share that as a culture, letting go and making room for new.

The one theme that cropped up time and time again for me over this weekend was storytelling. The anecdotes tell the truth in suicide – statistics and numbers don’t tell the truth because we learn through stories. Every single thing death throws at you there is a story somewhere proving you can do it. There are stories about making or doing – where a 93 year old train driver tells you his life lesson is to fight for what you believe in.

We need to find a relaxed way to talk about the things that unite us. What about the relationship the media has with death? The way the Hebden Bridge suicides were reported was simple not acceptable! Designers might not think of themselves as a storytellers, but in many ways, they are. The success of a designers work is dependent upon how well we tell the story and narrative of our process to the world and this is just one example of where I think the skills of designers link up with this space. Are death services seen as public services? it would appear the answer is no – they are seen has either charitable or money-making with little in between.

Do you know people doing good work in this space? Do you have a story you would like to share? Do you want to join us in looking at death with curiosity? Send me an email at lauren (at) wearesnook (dot) com