Becoming a-death through creative community practice

This is my presentation at AARE 2016 at MCG. It was part of a Symposium made up of Margaret’s PhD students:

Disruptive thinking through creative methods: Innovative research projects from the Space, Place, Body group

  • Angela Foley: Intimate material: Artful beyond words in the ‘posts’
  • Sarah Crinall: What is (the) matter-with-data?: The creative practice of blogging Space, Place and Body research
  • Abby Buckley: Becoming a-death through creative community practice
  • Sue Collins: Where is the waist of time: Finding the fulcrum
Angela presenting at AARE 2016

Angela presenting at AARE 2016

Sarah presenting at AARE 2016

Sarah presenting at AARE 2016

Abby presenting at AARE 2016

Abby presenting at AARE 2016

Sue presenting at AARE 2016

Sue presenting at AARE 2016

Becoming a-death through creative community practice

Powerpoint slides here

Slide 1

I have changed the title of my presentation. Instead of saying becoming-death I have changed it to becoming-a death. This happened after I was drawn in and excited by Pauliina Rautio’s keynote last week which shifted my thinking about my PhD research around death.

She referred to “a life” as being “bound to a single experience of individual consciousness … defined by the existence of a single organism. But no being survives on its own. No being survives or leaves “a life” without being sustained by another organism.”

I have adapted her thinking about “a life” to “a death” allowing me to shift my thinking about death to explore it as both a personal and a collective act, sustained by a multitude of energetic influences, in the human and more than human worlds, across dimensions of space-time-matter reality. It’s astounding how the relational-positioning of one small word – ‘a’ – can hold so much insight and change the way we think.

  1. Who has seen a dead body?
  2. Keep your hand up if you have washed and dressed a dead body?
  3. Who knows how many days a dead body can be kept at home?

Dr Peter Anderson asked us some questions during his Tuesday Morning Keynote which I have adapted.

Ask yourself:

  • How do you feel about death?
  • What do you know about death?
  • Where did you learn it?

There are not many opportunities to know human death in our Australian culture. Where is human death in our normal everyday life? When was the last time you came across a dead human body as you went off to work? We have not experienced mass deaths from war, starvation or natural disasters. People are living longer.

Our focus – personally, culturally, socially, ecologically – is on LIFE. How many times have you heard about death at this conference?

ABS tells us: 24 million people   |   160,000 deaths/yr (0.6%)   |   300,000 births/yr

About every 3 minutes someone dies in Australia. Where? We don’t see it.

It’s tucked away in Intensive Care.

The Grattan Institute conducted research in 2014 and found that 80% of us die in institutions and only 20% of us die at home yet 80% of us want to die at home. Clearly there is an issue here to be investigated.

Slide 2 – model

I’m going to locate my research using Ken Wilber’s Integral Theory 4-quadrants model. It allows us to view any issue from 4 worldviews that exist simultaneously in the present moment.

  1. The left side represents our inner subjective view.
  2. The right side represents the exterior material world.
  3. The top band represents the personal
  4. The lower band represents the collective.

Applying this model to what’s happening right now, the UL quadrant represents what’s going on for me right now in my inner world – my thoughts, emotions, values and beliefs. No one else can know this except me.

The UR quadrant is what I look like to you right now – you can observe my behaviour and measure my heart rate and brain waves.

The LL is the collective WE in this room – we are a group of educators with a shared interest in poststructuralism.

The LR represents the systems we are in – one of which is the conference system although Sue commented yesterday on the intricate systems around us for the mass serving of serving alcohol.

The title of this slide is “Sedimented Ontology & Epistemology”.

I love this word “sedimented” to describe our fixed ways of being and knowing the world. Pauliina used it in her keynote last week to describe our “Settled ideas and lived constructs and understandings of what it is to be human, to be an individual defined by the construct of species.”

Before 11:20am on Wednesday 4 April 2012, 4.5 years ago, I was living my life in what Pauliina calls a “sedimented ontology”.

Slide 3 – car crash

Then this happened. Under that olive-drab tarp is the dead body of my 22 year old son – Robbie. Mezirow calls this a “disorienting dilemma”; the catalyst in his transformative learning theory. Transformation happens when there is a permanent and irreversible change. Robbie is dead. That is as permanent and irreversible as it gets. I crossed a threshold into the liminal space where an ending meets a beginning; bursting with possibility. What will the transformation look like?

This is what our death system looks like for sudden death in a car crash. LR

Where am I in this photo?

What am I experiencing? UL

What is my behaviour? UR

Where is Robbie’s tribe? LL

What is happening simultaneously in these other quadrants?

I didn’t know Robbie was dying in that car crash.

He was in Newcastle and I was in Adelaide.

But as I later worked out, at this moment I was having a very real larger-than-life experience. It was an entanglement of time and space and energetic matter of some sort. But I have learned to be cautious about who I talk to about this experience. I leave myself open to being ridiculed, patronised and not taken seriously.

Pauliina encouraged us last week to look for the Platypus’s in our systems. When Platypus’s were first seen they were considered a hoax by Scientists because they did not fit into a category of the socially constructed species system. This experience is my Platypus. It was very real. I wanted to use my Masters in Education – Social Ecology to explore this experience with Margaret as my supervisor but the Ethics Committee said an emphatic No!!. This experience remains a platypus in both our death system (LR) and our culture (LL) yet research is showing that 50% of us have these experiences in their various forms around the threshold where life ends and death begins. At the Sydney Death and Dying Festival I went to on 19-20 Nov, Dr Michael Barbato, a Palliative Care Doctor of 30 years, author, speaker and researcher suggested it was more like 90%. These experiences are transformative and healing.

The experience I had, and many others have had at that life-death threshold; is considered fantasy by our culture (LL) and our systems (LR).

This both frustrates and intrigues me and is where I want to ultimately be located with my research.

Slide 4 – model

At the moment of Robbie’s death my sedimented ontology was more than deconstructed – it disintegrated – and in its place was a vacuum. I could no longer be in this world and know the world in the same way I had before Robbie died.

So this became my question and still is today:

How can I be in this world without Robbie?

I actually had no idea how to respond to Robbie’s death. No one in Robbie’s tribe did. We were culturally impoverished around death. Death is not in our everyday life in Australia. So when it rushed into our lives with the unexpected sudden death of Robbie, a vitally alive 22 year old, it took us all by surprise. In our ignorance, the death system (LR) efficiently did its thing and we remained disconnected from the process. I would do things so differently knowing what I know now.

Just a generation or 2 ago we used to care for our dead collectively. The body was lovingly washed and dressed by family and then laid out in the front parlour for visitors and buried in the earth. WE (LL) have outsourced death to the global corporations of the medical, insurance and funeral industries (LR). They will not give this profit and power up easily. Think for a moment about some of our body disposal practices – embalming with carcinogenic chemicals, burying bodies separated from the earth in concrete and metal, burning bodies using non-renewable fossil fuels and generating carbon emissions. Crazy stuff! But that’s a whole other topic!

I have many stories about this period but I will jump ahead and say that I have turned to philosophy to enable me to think deeply about my experiences and the PhD process gives me a framework in which to do this. I am blessed to have Margaret and Tonia Gray as my supervisors. So seeing I could not explore my Platypus experience in my PhD, Margaret suggested I focus on the community engagement work I had started doing.

In my quest to learn more about death – personally (UL), culturally (LL) and systemically (LR) – I started coming across a plethora of community-generated activities that have appeared in the last 5 years, designed to engage people with death in their everyday lives using everyday activities. I felt I needed to be part of these activities – that they would help me in my quest to find a new way of being in this world without Robbie. There were none of these in my community so I started facilitating them as a participant-facilitator.

These activities had confronting names such as Death Café, Before I Die Wall, Dying To Know Day, Die-alogue café. Each time I ran an event I was worried no one would come. What I found was that no matter what size venue I used, it was always full. I realised people want to talk about and engage with death but there are few spaces in our culture or systems to do this. So these activities are the focus of my PhD research project.

I am therefore located in the left hand side. As a participant-facilitator-researcher I will be using auto-ethnography as my methodology.

I am exploring the life-death binary and how to re-empower community around death, dying and bereavement so post structuralism will assist me theorise my thinking.

Slide 5 – Data 4Cs

I am interested in how engaging with everyday activities while vitally alive can change people’s ideation about death.

I will facilitate 3 community-engagement activities that use the ordinary, everyday activities of crochet, conversation, construction and craft.

Slide 6 – Fibre of ‘a life’ and ‘a death’

This is a personal project I will do at home – maybe with my daughter. We still have all Robbie’s things in his room, not sure what to do with them. I heard about this arts based project in Tasmania where 2 artists were spending a few hours in various cafes teaching people to make string from everyday objects. One of the artists then crocheted her own shroud from the string she made.

I am being drawn to creating yarn from Robbie’s things and then crocheting a shroud for him and me which can be used as a blanket in the meantime.

The data that will emerge from this process will be many things including journal entries, photos, conversations, the balls of yarn and the finished crocheted artefact.

Slide 7 – Death Cafe

A Death Café is where “people, often strangers, gather to eat cake, drink tea and discuss death. The objective is ‘to increase awareness of death with a view to helping people make the most of their (finite) lives’.  A Death Cafe is a group directed discussion of death with no agenda, objectives or themes. It is a discussion group rather than a grief support or counselling session.”

I have facilitated a few of these now in different towns and venues and noticed they attract mainly middle aged women – like me. The photo is of the most recent Death café I ran in the Barossa Valley SA. I find that curious and will explore that more in my research. That one brave man you see is my wonderful, supportive husband.

The everyday activity is conversation – catching up for a chat over coffee – who knows where the conversation will lead and what insights emerge.

Slide 8 – making the coffin

Men’s Sheds have started making coffins that can be used as bookshelves or wine racks til needed for burial.

I am keen to use this activity in my research as a pilot for a social enterprise in my community.

My vision is for people who want a coffin to be involved with building and decorating it themselves or with their family and friends.

The slide on the screen is the lid of Robbie’s coffin. It was signed as one long continuous message by everyone who came to our home to decorate his coffin.

A few days after Robbie’s death a Funeral Director sat at our kitchen table and took me through his coffin catalogue. That exercise left me feeling that there was a strong correlation between our love for Robbie and the amount of money we spent on his coffin. Robbie was studying his Masters in Architecture with a focus on sustainable, biophilic design. He needed a coffin to match his values.

A Cardboard coffin was not strong enough for pallbearing. So I requested a plain wood coffin. The Funeral Director became increasingly uncomfortable. He said the only thing he could offer was a “pauper’s coffin” with plain unvarnished wood. I said that was exactly what we wanted.

Slide 9 – decorating the coffin

It was just going to be my daughter and I who would decorate the coffin. But then people heard about what we were doing and we started receiving emails from around the world with photos and letters to print and stick on.

We decided to have an open-house day for people to come to our home and decorate the coffin.

It was an amazing emergent event with a steady stream of people the whole day. We had Triple J playing in the background and photos of Robbie around the place. Some people actively decorated, others just sat or stood quietly. Some people stayed all day, others came and went quickly. Some people came in reticently not sure if they were about to see Robbie in the coffin.

After the last 2 weeks of festivals, conferences and workshops I am realising my research design uses only human-centric activities focussing on human death in our everyday urban lives.

I am now thinking about activities that I can create that broaden the focus to de-centering the human and include death in the more than human world.

Slide 10 – Lost or Found?

I think about the language we use around death.

People tell me they are “sorry for my loss”

I didn’t carelessly lose my son; he died in a car crash.

Our focus is on what we lose when there is an ending like a death. What about we seek out what we can find in that liminal space of possibility between an ending and a beginning?

I am finding ‘a life’ because I am becoming ‘a death’.

Robbie is still very much involved in both.

The binary of life-death seems to disintegrate in this liminal space of becoming.

A new ontology and epistemology is emerging for me.

It makes me ponder that maybe WE (LL) can learn to live together by learning how to die together. Nothing brings people together like death.

Imagine becoming “a life” by collectively becoming “a death”.

Maybe in that liminal space where life becomes death becomes life is where we need to be looking for the answers to our questions. Let’s find a place for the platypus in the death system.

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