Category Archives: Whatever People Say I Am

Imagining Dementia Futures through the Arts

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When we talk about dementia, it’s often in exacting terms: It’s something that can be eliminated or cured. But the emphasis of the conference Imagining Dementia Futures at University of Manchester (22-25 February) was on how we can support people living with dementia to live meaningfully to the best of their abilities. Speakers imagined a range of future scenarios with a strong emphasis on the arts and were a combination of researchers, artistic practitioners, and, most importantly, people with dementia.

Dominic Campbell’s talk ‘Compassionate Community?: What Culture Might Grow Out from Residential Care’ discussed a project in a hospice where an artist used clay making to bring residents together and from this playful environment, intimate conversations were formed regarding mortality. Campbell is a cultural producer with an impressive CV who explained how he started out making costumes for carnivals and from this learned the value of transformative experiences and how these principles can be applied to active ageing and our perceptions of residential care.

Embodied experience was a recurring theme that drew many of the talks together. Ezinma Mbeledogu, who lectures in fashion, discussed how putting on clothes, such as a Sari, was evocative for her Windrush elders, leading to discussions on identity, race, and belonging. Joanne Knowles discussed how reminiscence projects such as football nostalgia groups and Men’s Sheds have helped men come together through a shared interest and wanted to apply these principles to female magazine reading groups, using Jackie and Just Seventeen as a means of triggering memories of adolescence. This particularly resonated with me as I remember the excitement on a Saturday morning when the postman delivered copies of Eagle, Beano, and Just Seventeen to my siblings and me. We were so excited we would sit by the front door from 7am, eagerly awaiting that magic hand to push print media through the letterbox.

An audience member commented that as memory becomes more challenging and words more confusing, music, clothing, and play become ever more important in forming connections.

Daithi Clayton

The talk that inspired and surprised me the most was by an American transgender nonbinary person called Daithi Clayton. Daithi, who has dementia and is 70 years old, discussed how AI bots were helping them to live a fulfilling and meaningful life by providing a personalized form of conversation and connection. They then gave us a live example, sharing a conversation with the AI Bot about an evening they spent together watched John Waters films. I commented that the conversation with the AI felt a bit formulaic and lacked authenticity, and Daithi explained this was a ‘family friendly’ version they had played, and that the rabbit hole went a lot deeper if you tweaked the settings! Daithi oozed charisma and I imagine could convince anyone of anything. But there was a real urgency to their talk in terms of developing these types of adaptive technologies, especially given the recent change in American government. Daithi is American Irish and lives in Belgium.

My talk was on the comic ‘The Knowledge’, created as part of the Whatever People Say I Am series with Thinkamigo Digital. Each comic challenges stereotypes and attempts to put a human face to statistics and is built on academic research whereby I read dense reports and papers and extract the key points that shape the narrative of the comic. Then it’s a case of finding the human face for the story. This takes as long as it needs to as a story will only show its face when it’s ready. ‘The Knowledge’ was the result of a year of interviews and visits to various care homes.

The comics include contextual essays by the key researcher or participants. This is so that readers can see exactly what has informed the narrative and we can be transparent about our research. If we’re challenging stereotypes, we must be clear about what we base our evidence on. Another purpose of this process is to take complex information and simplify it so that it’s accessible to the people it purports to represent. The contextual essays provide links to the original articles so that readers can go deeper should they require.

I was asked what challenges there were in making a comic about dementia. Well, there’s many, particularly given the vulnerability of the people you are talking to and how this information is used. But the most difficult thing is not being able to include everyone’s story, which is worrying, because you don’t want participants to then feel their lives are not interesting if they are not included.

My mother-in-law mastering snooker rules. Next up, football and the offside rule…

As this was a dementia conference, I shared my own experiences of dementia caring for my 82-year-old mother-in-law. One way we have bonded recently is watching snooker together. She enjoys the repetition of red-black-red-black and shouts out the score for each ball.  My fiancé has given up her career to be a 24-hour carer for her mum and so I am also conscious that while I was here giving the talk, she was one of the 5.8 million unpaid carers in Britain unable to leave the house.

The Imagining Dementia Futures conference was organised by MaoHui Deng, Sarah Fox, Kate Maguire-Rosier and Réka Polonyi, and hosted at the Martin Harris Centre for Music and Drama at the University of Manchester.

Comic exploring student experiences of lockdown

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The latest comic in our Whatever People Say I Am series explores student experiences during lockdown. This video includes some of the interviews that helped identify themes for the comic.

For the past couple of years, I’ve been working on a comic about student experiences during lockdown. The idea was to create a space that would provide a creative outlet for students and as a means of building community during a difficult period of their lives. This is important to me, particularly in academia, where too often research does not involve the people it purports to represent.

This was done in a variety of ways, but I’ll focus on one for now. I contacted Catherine Adams who runs a third year PR and Journalism course and provided her students with a client brief to work on as part of their assessment. For this, they created a one-minute promotional video and interviewed a student during lockdown. The original intention of the interviews was to have them appear in a block of flats on a page in the comic. You would see the drawing of inhabitants and then click on the still to generate the vox pops. But this didn’t work out for a variety of reasons.

The interviews served an important purpose still in that they helped identify key themes students were experiencing during lockdown which then helped inform the narrative of the comic. There were lots of other focus groups and interviews with students, but more of that another time.

I wanted to do something with the original interviews as these were important first-hand accounts of the pandemic. But the overall quality wasn’t good enough. This is because the interviews had been shot in different ratios, and in different styles – some included music and others included subtitles. This meant I couldn’t edit them together into one short video as it looked disjointed. Instead, I found some pictures of old TVs and ipads on Pexels and put the clips inside of them. This helped differentiate between the varying content styles and gave the video better production values. Now instead of looking like something cobbled together it looked like each clip had been filmed for a specific picture (see below). I then included shots from the comic to break up each interview and to demonstrate how the viewpoint had informed the narrative.

Image by Anete Lusina at Pexels.

I’m really happy with the end result, particularly as all of the students who helped produce the interviews now have a tangible outlet for their work and have a more meaningful presence in the project.

Watching these interviews again, I’ve noticed lots of new details that I didn’t pick up on at the time, such as the nervousness of the Cypriot student and her inaccurate view that most students are asymptomatic. There is no scientific evidence that a student is asymptomatic but perhaps it was reassuring to think this during the pandemic because stories of younger people suffering side effects was rarely discussed. For example, the first findings from the world’s largest study on long covid (NIHR) has found that up to one in seven children and young people who had COVID-19 may have symptoms linked to the virus 15 weeks later. Lead author Professor Sir Terence Stephenson, from UCL Great Ormond Street Institute of Child Health, said: ‘There is consistent evidence that some teenagers will have persisting symptoms after testing positive for SARS-CoV-2. Our study supports this evidence, with headaches and unusual tiredness the most common complaints.’

The comic exploring student experiences of lockdown is called Degrees of Isolation, a title suggested by David Belbin. The artwork is by Lauren Morey, an NTU Creative Writing graduate who worked on it during the final year of her degree. It is currently with Paul Fillingham who will be designing the cover and giving it the necessary digital makeover so that it can be read on our website. It should be available in December 2022.

The comic will be published on our website soon at whateverpeoplesayiam.co.uk