Category Archives: media representation

In Conversation…..

On Tuesday 18th May, 12.30-13.30 GMT, I’ll be in conversation with the head of Barbican and Community Libraries, Carol Boswarthack.

I first met Carol after her book group asked me to chat to them after they’d read my book, Somebody I Used to Know. It was after that, that she invited me to speak to the City of London Libraries.

You can even send in a question for Carol to ask me if you wish! Just scroll down the Eventbrite page until you see ‘Contact’ and that will open up a box where you can contact the organiser.

Hope some of you can join us. .The event is free and you can sign up here on Event Brite to join us.

Talking about the role of Fiction in Dementia on Woman’s Hour….

On April 1st, my partner in writing, Anna Wharton released her first fiction book, ‘The Imposter’.

I’d helped Anna with the dementia element in the book and also a piece about gardening! So I was thrilled when she asked me if I would be on Woman’s Hour with her. We had a pre meet with the another Anna from the show who chatted to us about the session on the programme. She also told us that my good friend Prof Jan Oyebode would also be on it with us discussing from an academic viewpoint. 

So we were on live last Wednesday…we had to log onto the Zoom at 09.15 to check sound and to check our connection etc and then stay logged on until transmission time which was 10am. 

Last time I was on Woman’s Hour it was for the release of my book with the lovely Jane Garvey but Jane left a few months ago so the interview was with Emma Barnett, her replacement……

Anyway, our section starts around 15 minutes into the programme….hope this works for everyone and you enjoy it…

https://www.bbc.co.uk/sounds/play/m000tshn

Hallucination video available to watch until midnight UK time

Not sure if this will help many people but for those who didn’t manage to see this afternoons showing of ‘Hallucination’ by the wonderful Suki Chan, Suki has allowed me to share the video until midnight tonight, UK time, after which it will disappear from view….

We had a wonderful event this afternoon spoilt by the Hackers that cam in at the end and abruptly finished the session.

it was lovely to be on screen with Suki again.

anyway I hope some of you get a chance to watch it during the few hours it’s available ….

Todays showing of ‘Hallucinations’

There seem to have been a blip on Friday where some of you didn’t receive my blog, including me!! So I’m not sure if you will get this one or not 🤔 but it’s a reminder for all those who have booked tickets to see this showing, especially if abroad, that UK clocks moved forward 1 hour last night. Hopefully you’ve all had an email from the organisers if you booked, but just in case…. the clocks going forward also mean I havn’t a clue what time to set my blogs to be published as Word Press isn’t a UK based web site, so I’m going to set it for 09am and see what happens 🙈….anyway, fingers crossed this works today…..

For a few years now, I’ve been involved with the amazing creative artist, Suki Chan. We’ve done lots of filming in and around my home. On Sunday 28th March at 4pm -5pm, there is a showing of the video ‘Hallucinations’ featuring myself and Pegeen O’Sullivan. That’s me in the picture looking out over the paddock opposite my house

I was able to give you all a preview once, and here’s another single day only when the video will be able to be viewed before a big exhibition at Bluecoat (Liverpool) next Spring, which I hope to attend! .

Here’s what it’s all about:

HALLUCINATIONS is an immersive journey into the personal experiences of two people who are living with dementia, juxtaposed with the perspective of two carers.

The film reveals intimate details that convey how dementia changes perceptions – resulting in hallucinations, altered experiences of time and sense of identity.

The 2 channel video installation invites us to enter into the reality of Pegeen O’Sullivan, the daughter of Irish novelist, Liam O’Flaherty, who currently lives in a care village in North West of England and Wendy Mitchell, who wrote her first book, after being diagnosed with young-onset dementia at the age of 58.

The film transports us to their interior worlds, their personal journeys and perceptions of reality. We are offered an insight into Wendy’s daily coping mechanisms in her home – photos adhered to the door of cupboards so that they can be identified as cupboards rather than protrusions from the wall.

Old memories when recalled appear as present reality, dead relatives reappear in their homes; what would be unsettling for people without dementia, may in fact bring comfort and security for those with it. The intimate perspectives, dilemmas and hopes for the future, revealed in HALLUCINATIONS, offer a fresh and startlingly honest investigation of what it feels like to have dementia.

The Islington tunnel, a grand piece of Victorian architecture, becomes a visual metaphor for the dementia journey.

How do mind-altering diseases such as dementia de-stabilise our understanding of reality? And conversely what does this tell us about our own understanding and perception of reality?

HALLUCINATIONS was filmed in Belong care village in North West England, Wendy’s home and the canals in London.

The textured soundtrack is composed by Dominik Scherrer, winner of the 2014 Ivor Novello Award.

HALLUCINATIONS was commissioned by Science Gallery Rotterdam and Bluecoat, funded by Arts Council England. Research and development supported by Where the Arts Belong, a partnership between Bluecoat and care provider Belong, funded by Arts Council England and The Baring Foundation.

HALLUCINATIONS is the second film from CONSCIOUS, Suki Chan’s multi-platform project bringing together the diverse, subjective perspectives of scientists and ordinary people, whose stories unwrap layers of thinking and preconceptions about individual and collective consciousness.

You can book tickets free for the showing via Zoom, on Eventbrite following the link below. I’ll be there too speaking. The music is hauntingly beautiful…..I adore all of Suki’s work, but just love this…

https://mailchi.mp/fe3bf1b7899a/suki-chan-hallucinatons-screening-march-28?e=%5BUNIQID%5D

A conversation for the NI Science Festival…..

Some weeks ago, or it could have been months, who knows 🙄….I was asked by Belfast born novelist, Jan Carson if I would take part in the Northern Ireland Science Festival. The bonus would be that it was also include my partner in writing Anna Wharton.

It was to be a conversation around our writing my book together, Anna’s imminent brilliant new fiction book ‘The Imposter’ , which includes a clear element of dementia and is full of twists and turns…and how literature depicts people with dementia. Some of you, I know have seen this as you booked on line for the free event, but here it is for those who missed the interview.

This is the blurb about from their web site…

“In this much anticipated conversation, Belfast-based novelist Jan Carson will chat to Wendy about her experience living with and writing about dementia, alongside author Anna Wharton who helped co-author Wendy’s memoir and has recently published her own debut novel, The Imposter in which she further explores the theme of dementia. Queen’s University Belfast based linguist, Dr Jane Lugea will also be joining the conversation to talk about her AHRC-funded research project exploring how writers represent dementia in their fiction. 

We are delighted to bring together three inspiring women for an important conversation about how dementia can be written about with dignity, hope and imagination.

anyway, you can watch the interview by clicking on the link below – make a cuppa and sit and enjoy…..

https://www.nisciencefestival.com/e21367-somebody-that-i-used-to-know-with-wendy-mitchell

Two BBC films side by side – and the new way of talking…

Gosh, this year couldn’t have been any different could it? Last year I’d promised myself I would talk to different groups of people, widen my awareness raising. I adored walking into an event, no one knowing me, people ignoring this faceless person or scrutinising my every move, unsure whether to approach me or not. Obviously the person who’d ask me would settle me down, get me a cuppa, make sure I was ok. But then once I’d spoken, the room immediately became a friendlier place. People smiling, coming up to speak. I loved to see that transition in their minds eye of someone with dementia before I spoke and then afterwards. 

But all that has gone. Apart from, I’m still being selective in the groups I speak to, but this time via the barrier of zoom. The ones I can remember are the lovely North West Women’s Institutes, Essex Social Workers who were willing to listen and learn, an Investment Company where Sally Magnuson interviewed me and I imagine many more long forgotten.

But there was so much missing. The atmosphere, the anticipation, the journey but the one thing that saddens me most each time is the ending. Yes people are kind in their thanks but then what? No conversations, no smiley faces, no cuppa teas. Just a blank screen devoid of all human contact. I tell myself it’s all we’ve got at the moment so carry on because there’s no other way. And of course I can’t type the detail as I’m on screen on my ipad. The detail of each lost.

I think one of my favourites of late, apart from the ones being with playmates, has to be one I gave to my favourite species – students. This time Covid worked in my favour, as they were Canadian students, so zoom had allowed me to speak across the waters. Cathy Farrow is a Twitteroo like me and asked if she could email me. I hadn’t noticed she was a lecturer in Canada so was delighted when she asked me to speak to her class of Health Care staff who would be going out into Care Homes and people homes to provide care, many of whom would have dementia. She’d seen the film me, Keith Oliver, Veronica and Christopher Devas had made back in 2015 for the BBC and had regularly shown it to students. What she hadn’t realised, was that we made an update on our change 3 years later. So I was able to send her that copy too. Obviously these are now out of date but the first allows you to see when when first diagnosed and still working. Then 2 or 3 years later the more hesitant me in my new home. The zoom went to plan but once again , the silence at the end was deafening…

Anyway,  it’s these I thought I’d share again today. I know I’ve shared them before but as proved above, not everyone had seen them……The first being from 2015 and the second link from 2018….

And the second…

https://www.bbc.co.uk/programmes/p05zqw0m

Two things to watch, one to listen to……

The first was put together by West Yorkshire and Harrogate Health & Care Partnership and is about Advanced Care Planning. As well as my own views, there are the views of many others. The theme from everyone being: 

Death is as natural as living. We plan for the birth of children why not our death?

That;s me and my lovely daughters at the beginning 😍

This second one was recorded by the lovely Philly Hare from Innovations in Dementiia and features myself and playmates Keith Oliver and Chris Maddocks. The aim of the piece was to describe our vision of the Social Care Future. What the future would have to look like to enable us to live with dementia in a way we wished.

And finally a pod cast interview I did for the American Marianne Sciucco who is a founder member of AlzAuthors.

The podcast is called Untangling Young Onset dementia and is a series of interviews with authors who have written about dementia in their lives…Mine was episode 1, so if you scroll down on the page you should see all the current episodes….

Working with a wonderful video artist……

I’m not sure how long I’ve been working with Suki Chan, feels like I’ve know her forever. She’s visited my home a few times, each occasion recording inspiring footage for the her work and my words to go with the images…I must have written a blog about each of her visits. I so enjoy working with her because of the uniqueness of the completed work as you will see from the video….but it is only viewable for 1 week starting today…

We had some wonderful news the other day, as this particular piece, entitled Hallucinations, will be viewable for one week only starting today – and then it will be exhibited physically in the gallery at Bluecoat (Liverpool) next year – with the full project CONSCIOUS  (including the new film we are making now, Fog in My Head).The music chosen by Suki had me mesmerised and felt perfect for the piece. We’ve been working on another one that will be released next year too….here’s one photo she took of me looking out of my front window towards the old paddock…hidden by the leaves this time of year…..

There’s also an elderly lady, Pegeen O’Sullivan, the daughter of Irish novelist, Liam O’Flaherty, also on the film and is adorable. She also no longer as fear, so I instantly  felt an affinity with her…

It’s 15 minutes long and I love it….you can watch and listen here…..

https://vimeo.com/384579441

You can either read about it via clicking the link http://www.sukichan.co.uk/Hallucinations.html

or for those who don’t like clicking links, here’s the words…

HALLUCINATIONS is an immersive journey into the personal experiences of two people who are living with dementia, juxtaposed with the perspective of two carers.

The film reveals intimate details that convey how dementia changes perceptions – resulting in hallucinations, altered experiences of time and sense of identity.

The 2 channel video installation invites us to enter into the reality of Pegeen O’Sullivan, the daughter of Irish novelist, Liam O’Flaherty, who currently lives in a care village in North West of England and Wendy Mitchell, who wrote her first book, after being diagnosed with young-onset dementia at the age of 58.

The film transports us to their interior worlds, their personal journeys and perceptions of reality. We are offered an insight into Wendy’s daily coping mechanisms in her home – photos adhered to the door of cupboards so that they can be identified as cupboards rather than protrusions from the wall.

Old memories when recalled appear as present reality, dead relatives reappear in their homes; what would be unsettling for people without dementia, may in fact bring comfort and security for those with it. The intimate perspectives, dilemmas and hopes for the future, revealed in HALLUCINATIONS, offer a fresh and startlingly honest investigation of what it feels like to have dementia.

The Islington tunnel, a grand piece of Victorian architecture, becomes a visual metaphor for the dementia journey.

How do mind-altering diseases such as dementia de-stabilise our understanding of reality? And conversely what does this tell us about our own understanding and perception of reality?

HALLUCINATIONS was filmed in Belong care village in North West England, Wendy’s home and the canals in London.

The textured soundtrack is composed by Dominik Scherrer, winner of the 2014 Ivor Novello Award.

HALLUCINATIONS was commissioned by Science Gallery Rotterdam and Bluecoat, funded by Arts Council England. Research and development supported by Where the Arts Belong, a partnership between Bluecoat and care provider Belong, funded by Arts Council England and The Baring Foundation.

HALLUCINATIONS is the second film from CONSCIOUS, Suki Chan’s multi-platform project bringing together the diverse, subjective perspectives of scientists and ordinary people, whose stories unwrap layers of thinking and preconceptions about individual and collective consciousness.

A revisit to a podcast I made for the Guardian…..

I was looking through my blogs the other day and came across this one, one of my favourites as I’m in conversation with my lovely partner in writing, Anna Wharton. It was soooo nice to hear us chatting together that I thought I’d share it again…..I forgot to look at when we did it but it must have been 2/3 years ago… I think…..🤔

 

I’ve had some wonderful opportunities to promote my book through sources that would have been out of my reach if it hadn’t been for my wonderful people at Bloomsbury

Released on Tuesday was a podcast made for the Guardian with Claire Amitstead featuring me and my partner in crime and now amazing friend Anna Wharton. We were in conversation about how we wrote the book. It was lovely to hear Anna’s voice as we live at opposite ends of the country so I only ‘hear’ her voice in my head through our daily whatsapp chats.

The conversation also stresses that the book is about so much more than dementia. It’s about life and life choices when we’re faced with difficult situations in our life.
Link below. The first 15 mins is Neurolgist Jules Montague explaining dementia and then it’s us…

https://www.theguardian.com/books/audio/2018/feb/20/do-our-memories-make-us-who-we-are-books-podcast

A Recording I made recently…..apparently…!

Whenever things like these make an appearance on Twitter, of recordings I’ve made, I listen to them as if for the first time. I have no recollection of recording this, but it’s certainly me…I don’t know when or where we were or who the people were..but it’s clearly my voice, my words, words I’ve said a thousand times before….

From the blurb on the web site, it appears I recorded this outside the  village pub in the garden. It’s a series of podcasts called ‘Dementia and Me’, recorded to highlight the individual experience of people affected by dementia, and I’m just one……there’s many other good ones…..

It’s so strange having no recollection of something that apparently I recorded quite recently.

You can listen to it here…..it starts off generally and then comes my interview…..

https://www.bbc.co.uk/sounds/play/p080pw7q

 

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