Insights from volunteering by Julie

As designers and researchers on the Ongoingness team, we have committed to undertaking volunteering roles. Aside of the personal desire to make a difference and contribute, this is also meaningful in the context of the project. We need to remove ourselves from our normal workplace where we have expertise and a sense of familiarity, and place ourselves in new situations in order to get a different insight from what we are used to or what we might believe. When working with participants we also need glimpses into their daily lives, the challenges faced and the highs and lows that they may want to discuss with us during the project, particularly if we have no personal experience that we can draw from. This may be in various settings- care homes, hospices, charity support lines. And not least because it is a way of offering help and support to those who are at a difficult point in their lives, at a more simplistic and naïve level than we offer as academics.

For a few months now I have been volunteering at a local Marie Curie Hospice. I have found it such a humble and yet vital experience to have an appreciation of the inpatient ward through a different lens. I already know the hospice well. As a practising and academic interior designer, I’d previously been on a walk-about with an architect who had been involved with the design of the original hospice and continues to be involved with upgrades and modifications responding to the changing environment of hospice care. I know the architecture and interior layout and the reasons behind the decisions made. As a former doctor, I can understand the daily activities of the medical team and the needs and desires of the patients. However, when undertaking the more basic task of serving tea and coffee on the morning round, you take on a deeper understanding and see things from a different perspective. It allows you to observe silently yet respectfully: the staff, the patients, the visitors, the room layouts, the choice of furniture, the impact of medical equipment, the lighting, the views internally and externally. Nobody really bothers you. You can move around without urgency or deadline. And you begin to realise perhaps unexpected things:

“John likes a weak tea with a splash of milk and one sugar”… The domestics know exactly what everyone drinks.

I have previously collaborated with JDDK Architects on a research initiative which is ongoing, examining hospice design and whether the initial design process and the resultant building continues to respond to current-day requirements and promotes patient well-being.

Ian Clarke, one of the former directors, questioned how we can design for the intangible qualities of hospice care, such as compassion, empowerment, trust and empathy. In order to answer questions like this we have to be able to appreciate how end-of-life care is given and received from all aspects and in this volunteering role, I am starting to get a sense of how and where this might happen.

Written by Julie

 

 

Clarke, I. (2009). Design and Dignity. Retrieved from: http://hospicefoundation.ie/wp-content/uploads/2013/04/Ian-Clarke-Design-Dignity-Essay.-October-2009.pdf

Inspiration

I met some wonderful academics and filmmakers at the AHRC Workshop: ‘Connecting or Excluding? New Technologies & Connected Communities, in Glasgow last week. Thank you to Andrew Prescott and Keri Facer for the invitation. Helen Manchester gave a keynote about her research on the Tangible Memories project and Parlours of Wonder and I was lucky to also have some rich discussions with her separately. We shared some of our similar experiences of how people living in care homes find ways to ‘place themselves in age’ – meaning that because the care home is a complex environment, that is at times more a workplace than a homely one, people living there often find personal ways to adapt to this. This chimed with work that I’ve done with Sian Lindley and it was fascinating to hear Helen speaking about her experiences.

The work of Michele Aaron and Briony Campbell in the research Life:Moving Digital Technology and Human Vulnerability: Towards an Ethical Film Praxis was astonishing. They introduced and screened a number of the films at the workshop and this, for me, set such an important tone for the whole 2 days of presentations, discussions and thinking about what it means to support self through digital technologies and what an ethical praxis is in challenging contexts like end of life. Through the project collaboration between researchers, photographer and film-maker and hospice patients the power of film was explored to “communicate the meaningful and honest experiences of those affected by terminal illness.” The work was supported in part by the John Taylor Hospice, University of Birmingham and the AHRC.

There are so many things to say about this work – and also the stunning film made previously by Briony – The Dad Project There is a beauty in each of the films and once I’ve digested the work further I’ll write again about them as there are some incredibly significant things for us to consider on the project and as we start to work in depth with people ourselves.

Helen, Michele and Briony have agreed to act as critical friends to the Ongoingness project and I’m looking forward to their perspectives on what we are developing and the rich conversations to come.

Written by Jayne

Ongoingness team meets Mary Mackey

The wonderful Mary Mackey visited us and shared with us her master’s research/art practice which speaks very beautifully to continued relationships and working with and through objects to sense-make in contexts of bereavement. She interviewed 5 women about their evocative objects. She made us wonder what makes an evocative object and gave us glimpses of what is meaningful for people who experienced the loss of a beloved person.

The outcome of her project was an art exhibition where she exhibited her responses to her participants’ stories. A beautiful collection of screenprints and objects. Mary transferred us to a very personal space where repetition, loving and being connected was present.

Written by Nantia

A day out at Seahouses

A few weeks ago I had the opportunity to meet a lovely family with a member that is in the later stages of dementia. In collaboration with Silverline Memories, the Charity that provides “places to go and things to do” for people living with Dementia in Newcastle & Gateshead, James, myself and Dean (our driver) took the family on a tour at Seahouses (a village north on the Northumberland coast). I was helping James to capture the day through photographs, audio and 360-degree videos. The initiative was part of James master’s project that focuses on designing for enriching lived experience for people with dementia and improving social contact with community members through the design of personalised interactive media experiences.

During our tour at the Seahouses, we visited Grace Darling’s museum to find out about the life of a brave woman who rescued 9 people from the sea in 1838. Through her personal objects and a stunning model of the lighthouse we were transported in time and learned about the local history. Throughout the day, John struggled to communicate verbally but he was playful with his two daughters and on our way back to Newcastle, he told his wife how much he loved her. At that moment I realised he was enjoying his time with us.

Posted by Nantia

Analogue vs Digital – Stories from GriefCast

I’ve been listening to GriefCast (https://www.acast.com/griefcast) to better understand how people experience grief and how technology has positively and/or negatively affect people at different points in their journey after the loss of a beloved one. Based on the first 11 episodes, here are my thoughts.

Losing someone feels like…

At various points during the episodes, host and comedian Cariad Lloyd describes losing someone like ‘you’ve had a couple of layers of skin ripped off’ or it’s like ‘you’ve had the table cloth pulled from underneath you’. People can become hyper sensitive for example the noise of a train can be overwhelming.

Just knowing I have it is enough

On occasions, guests have talked about the digital footprint of the person that’s died and how knowing it’s there is a comfort; ‘just knowing it’s there is sometimes enough’. However some people simply ‘can’t bare to read the messages yet, and the voice notes will be harder’.

Video might be harder to watch

Cariad’s Dad died before the birth of text and email, so the only digital content she holds is a Dictaphone recording that can’t really be played anymore because it’s so old. ‘I definitely didn’t listen to that dictaphone for a long time, you’re just dealing with such rawness and pain that it takes a while’. The family later found a video of Cariad’s dad when he was a child which seemed to upset her, ‘seeing the cinefilm, that was a real… having not seen him move for so long, a moving image, I did find it really… I think it did help that it was a person I didn’t recognise, because he was 8. OK, it’s really upsetting but I don’t really have a connection to that person’ (Episode 3, 38mins)

I could touch it!

Jon Harvey later comments on the qualities and comfort of letters and photographs ‘it’s tangible isn’t it, there’s something about old school technology’ (Episode 3, 38mins)

He was everywhere in the media, but not the person I remember

In Episode 11, Amy Hoggart talks about losing her dad who was a journalist ‘a weird experience for me is that Dad was a journalist… and he was very slightly in the public eye’ … ‘it was in the news the next day, and we were really sensitive to it but it felt like it was everywhere’ … ‘there were pictures of him and he used to be quite chubby and always laughing… suddenly we were given lots of images of him which were almost unrecognisable because that’s not who we’d been with for ages. And it was actually quite nice to see that no one else will know what it was like at the end.’… ‘There were some bits I found hard, like there was a piece on Radio 4 that I’d not known was going to be on – I did not like hearing his voice, other people don’t have to deal with that. And we were watching the news and there was TV footage of him, and that was horrible’ … ‘You have no control, unless you live in a bubble you’ll just hear them all the time.’

Amy goes on the explain the comfort of printed media that she saw around her father’s death, ‘the print versions, I found comforting […] it felt like other people missed him, that felt special. I also liked that we didn’t have to tell anyone, everybody knew.’

Analogue vs Digital media

This episode (11) is really interesting in terms of technology and grief. Cariad talks about being an ‘analogue griever’ – her father died before the digital really hit off, ‘it’s much harder for me to dig out those pictures’ whereas for Amy ‘it’s just a click away so it’s really tempting, I think I’m more desensitised to it because it’s so available […] I do wonder about the even more digital age where people are on twitter etc […] I guess it keeps them present’.

Posted by Helen

Moira Ricci’s photographs: A dynamic relationship with her mother, after her death.

‘Well I hear the music, close my eyes, feel the rhythm, wrap around, take a hold of my heart’ (Ora sento la musica, Chiudo gli occhi, Sento il ritmo che mi avvolge, Fa presa nel mio cuore) and 20.12.53-10.08.04 are works made by Italian artist Moira Ricci created between 2004 – 2009 following the death of her mother. ‘Well I hear the music…’ is a video piece created from home video footage taken by Ricci’s mother of her at dance recitals as a child and 20.12.53-10.08.04 comprises a series of photographs from Ricci’s family archive each featuring her mother over the course of her life. Ricci altered each photograph to add herself into the image – always at the same age, as an adult, and always looking at her mother. Ricci’s craft has enabled her to manipulate the photographs to create a realistic inclusion of her own image to the variety of different qualities of photograph that make up the work.

Ricci describes the works as a response to her mothers death stemming from her need to both remove the image of her mothers’ dead body from her mind and also to “carry on an external dialogue with (her) mother” (Ricci 2011) – firstly by seeing through her eyes (through the video footage taken by her mother) and secondly by placing herself within photographs of her mother to try to warn her of the accident that would lead to her death. The gaze is central to both pieces; in reference to 20.12.53-10.08.04 Ricci states “I always look at her as I need to tell her about the accident that is going to separate us. You can see from my gaze that I already know what will happen. Unfortunately I remained trapped in the picture, but at least close to her” (Ricci 2011). This body of work we know took place over five years (2004 – 2009) suggesting an ongoing-ness, a developing dialogue and possibly what Silverman and Klass refer to as a continued process of negotiation and meaning making.

Posted by Jayne