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

Frank Kolkman

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I’m sharing this work from Frank Kolkman because it has given me much pause for thought in relation to our ongoingness project and the potential use of technology to support people in relation to mortality. The Dezeen article uses phrases and terminology that perhaps sensationalise the piece and aren’t the way that I’d talk about mortality (i.e. Kolkman calls the piece an ‘Out-of-body experience simulator’ but it is written up as a ‘Death simulation machine’) – and there is something very interesting more broadly here about the way that cultural commentary and documentation talks about death that this plays into – but the piece itself seems to have a far more nuanced, open, ambiguous and gentle approach to gaining a personal perspective on your own mortality.

https://www.dezeen.com/2017/11/23/frank-kolkman-outrospectre-near-death-experience-virtual-reality-technology-robots-health/

posted by Jayne

D4H Keynote

Screen Shot 2018-10-01 at 14.07.18It was an honour to be asked to give a keynote at the 2018 Design4Health conference in Sheffield in September. Helen has already talked about some of the amazing research being presented there – it was a fab event – and I’ll write another post about the work of Gavin Munro as I enjoyed that so much. Here are a few photos, slides from my keynote and amazing live drawings from Sarah Smizz — Thank you @smizz!

Written by Jayne

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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

Design4Health: Our impressions

Design4Ongoingness

Lab4Living recently held the Design4Health Conference in Sheffield. We welcomed 160 delegates from over 20 countries. It’s always inspiring to see and hear from people in both disciplines (design and health) who are talking the same language. I noticed an increase in presentations around dementia and end of life this time round and have pulled out a few titles here:

  • Designing for playfulness through compassion: design for advanced dementia
    Cathy Treadaway – CARIAD, Cardiff Metropolitan University
  • Evaluation or anecdote: understanding the impact of design. Gail Kenning – University of Technology Sydney, Cardiff Metropolitan University, Eindhoven University
  • Designed with Me: Dementia’s Creative Communities
    Euan Winton – Imagination, Lancaster University
  • Staying in touch as partners – creating islands of normality for couples living with dementia. Sonja Pedell – Swinburne University of Technology
  • Clothing and dementia. Exploring the lived experience.
    Rebecka Fleetwood-Smith – University of West London
  • Designing person centred products for people living with dementia
    Stephen Reay – AUT University
  • Understanding Meaningful Relationships for Families Living with Dementia in Long-term Care. Angelsea Saby – OCAD University
  • Designing a better visit: Touch-screen apps for older people living with dementia and their loved ones in residential care settings. Sonja Pedell – Swinburne University of Technology
  • Life Cafe – A Co-Designed Method of Engagement
    Helen Fisher & Claire Craig – Lab4Living, Sheffield Hallam University

Abstracts and full papers can be found at www.design4health.org.uk

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One presentation that particularly stood out for me was in the ‘Democratization & Design’ strand and was titled; Design With Care – From Art to Applied Design to Income Source, presented by Laila Cassim – RCAST, Tokyo University. Cassim’s paper explores ‘how the linkage of creative activities by disabled people and the strategic use of co-design methods and inclusive processes can enable new forms of financial independence and social empowerment for people who would otherwise have difficulty gaining mainstream employment’.

It was the co-design methods, that gave people a sense of purpose and agency that really resonated with the Ongoingness project, as well as the fact that they were creating beautiful objects that might one day outlive them but leave their mark on the world; it made me think about Ongoingness through Art.

Cassim also included an inspiring example of using peoples experiences and stories as coping mechanisms through the co-design of a card game called Karuta. The card game was also designed and produced by the same group of individuals who had shared their experiences of mental health. We hope to engage in similar methods during our project, the process of designing beautifully personal objects with individuals is as important, in creating a sense of Ongoingness, as the outcome.

Posted by Helen

Conversations about dialogicality and the notion of ongoingness

Jayne and I have been working on a spectrum of ongoingness – drawing from ideas that we’ve all had in group meetings and beyond as a way to aim to see an overarching conceptualisation of the notion of ongoingness. One of the main points we discussed was whether the ideas that are emerging in our project are dialogical (read Wright and McCarthy) or not – also how reflective or reflexive they are. The debate on reflexivity is rich and nuanced, and there are different ways of looking at it. We refer here to Paul Hibbert’s definition that reflection achieves some learning but the learner is the “same person” afterwards – reflexivity achieves learning but also leaves the learner changed as a result (read more). So (very crudely!) we could say that reflexivity is reflection + self-change.

We contacted Pete Wright and John McCarthy to discuss our thinking.  Our conversation focused on how the “surplus of seeing” of the other (see more on Bakhtin) would play out in terms of a dialogical encounter between self and a deceased other, or to-be-deceased self and other.

Does biological death or death of self represent the final loss of all potential because we can no longer enter into dialogical encounters?
Or is that the point of ongoingness to help others continue to find new ways of seeing surplus in the self (e.g. in me) of creating me?

Their input has been hugely insightful and useful. We are now weaving all the threads together and developing further our thinking on what the spectrum of ongoingness looks like.

Books/papers we are reading in relation to this focus

Dialogism and dialogicality in the study of the self

Mikhail Bakhtin: Creation of a prosaics

The rituals pleasures and politics of cooperation

Mortality as Framed by Ongoingness in Digital Design

Taking [A]part. The Politics and Aesthetics of Participation in Experience-Centered Design

Written by Nantia