Jan Carson: When stories about dementia can also be an enjoyable read
Jan Carson edited A Little Unsteadily Into Light with Jane Lugea.
When it came to naming her latest book, a collection of dementia-inspired fiction, Jan Carson turned to Samuel Beckett, whose work is steeped in the themes of memory, ageing and identity.
The title, , comes from a stage direction for Beckett’s play Krapp’s Last Tape. For Carson, the words encapsulated both the attempt to strike a fragile balance when writing authentically about dementia and the challenge of living as well as possible with the condition.
Carson, who was born in Ballymena, Co Antrim, is one of Ireland’s brightest writing talents, with her novels and attracting rave reviews. However, her latest project holds a special place in her heart, inspired as it is by her own family experience along with her long-standing work facilitating arts events and workshops for older people.
There are many forms of dementia — the most common and best-known types are Alzheimer’s disease and vascular dementia. Carson’s maternal grandmother had a ‘long journey’ with Alzheimer’s and two of her other grandparents were also affected by dementia. The lives of most of the anthology contributors have been touched by dementia in some way, says Carson.
One of her aims in the anthology, which she edited along with the academic Dr Jane Lugea, is to address the fear and stigma that surrounds dementia while also banishing some of the misconceptions around the condition.
“I think the fear is completely understandable," says Carson. "Dementia can really eat away at those things that are particularly key to our sense of self, like memory, the need to express ourselves, our independence and autonomy.
"There are some people who are having a desperately difficult time and there are also folks that are living so well with dementia and you don’t want to undermine their ability to persevere. You are always walking that fine line.”
It is also important to remember the moments of joy and humour that can come with the condition, says Carson.
“There were times around my nana’s bedside where we would howl with laughter because she said it exactly like it was. There is a sensibility of using humour as a coping mechanism, which I think is quite healthy. I also find that sometimes even towards the end of someone’s journey with dementia, you can still have these little moments of joy, even when language has gone.”
In her work facilitating arts events and workshops for older people, Carson saw the importance of creative expression in helping those with dementia.
“I did a lot of projects around dance and movement, with people who were non-verbal but when you put music on and held their hands and helped them move, a big smile would come on their face.
"People with dementia have a right to express themselves, a right to enjoy life as much as we can help them do that. It is why I am always a big advocate of funding projects that use arts, music and all of these things to engage with people.”
As a writer, Carson says she is particularly interested in the role of language in dementia and how “playful and creative” it can be. She explains the term 'under-lexicalisation', where people lose their use of certain words.
“They normally lose nouns first and you see repetitive generic words like ‘thing’, as in ‘pass me the thing’, ‘can I have the thing’, but you also see how creatively they use language to get around what they have lost. I had a person I worked with once who had lost the word for glass and she said 'can you pass me the thing that the wetness goes in?’. That is such a poetic beautiful way to explain something.”
What Carson found particularly noticeable in her own research was the narrowness apparent in representations of dementia.
“Your atypical person in a dementia narrative is a white, middle-class, elderly lady who is basically a bit doddery but nice. Having worked in this field for ten years, that is definitely not the only experience I’ve seen."
Carson says they actively sought diversity in terms of gender, class assumptions, and ethnicity. "The ethnicity one was quite hard because different cultures have different responses to ageing and dementia. There are areas of the world where people aren’t writing about dementia yet because there is still a shame and a stigma attached to it.”
She says many creative efforts fall short when it comes to depicting dementia.
“You get these very clichéd, stereotyped depictions of dementia and then some stuff that is out and out wrong. There is also a thing you see a lot in crime fiction, where loss of memory becomes a trope. It is quite demeaning because they are just being used as vehicles for the plot rather than as fully developed characters.”
However, she acknowledges that the 14 pieces included in the anthology are, above all else, ‘brilliant’ stories that aren't bound by the need to be positive or educational.
“We wanted the contributors to write stories that were compelling that just happened to have someone with dementia in it. In the same way that it is ludicrous nowadays to write about Ireland and not have a person of colour or someone who is gay in your book, I have been trying to drop dementia into my work, to normalise it and start a conversation that these people aren’t to be excluded or pushed to the boundaries of our society, they are part of our communities.”
Carson cautions that the stories aren't the depressing reads some might expect. “Some of the stories are quite hard reads but some are really funny, and some are quite dark and chilling. What I get a lot is ‘you are very good, that is a very good thing to do…’
"But we are artists, yes it is lovely to help people and to see the benefits of the workshops but they also fuel me creatively. I am not just interested in dementia because I’m a nice person.”
Ultimately, she hopes that the book will help diminish what she terms the ‘holy cow’ status of dementia.
“I hope people really enjoy the stories but I also hope it challenges some of their assumptions about dementia — that it’s a serious thing and we have to talk about it really seriously. The folks I have worked with in the past, a lot of them, they make fun of themselves. They are able to talk honestly and not pussyfoot around the difficult stuff.
"I don’t think it does anybody any service — whether it is dementia or other difficult issues in society — if we can’t talk about them honestly or with humour and a full sense of ourselves.”
- , edited by Jan Carson and Jane Lugea, published by New Island Books, is out now
