Acclaimed author Jan Carson introduces A Little Unsteadily into Light, her new anthology of short fiction (co-edited with Jane Lugea) exploring the depths and breadth of the dementia experience.
Coming up with a title for our anthology of dementia-inspired fiction was never going to be an easy job. Almost 65,000 people in Ireland currently live with a dementia diagnosis. Most of us have had a personal connection. It can be hard to capture this complex experience in words. Books about dementia often over-emphasise memory, forgetting and loss in their titles. While memory problems and language confusion are often associated with the illness, dementia is an umbrella term for over a hundred different cognitive conditions each with its own set of symptoms. Every person with dementia has both a unique experience and unique response to their condition. In trying to pin down an anthology title we wanted to reflect how diverse dementia stories are.
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Listen: A Little Unsteadily into Light - Jan Carson talks to The Brendan O'Connor Show
I've spent years working as an arts facilitator specialising in dementia engagement. I’ve also journeyed through Alzheimer’s with close family members. I’ve watched many people live extremely well with dementia. I’m thinking of the Singing for the Brain group I co-led for several years, our dementia-friendly cinema club and dozens of dance and movement workshops where the joy was so thick, it was practically running down the walls. I’d regularly leave these spaces feeling better about myself and the world. I’ve also seen people with dementia contribute so much to society. Organisations such as Dementia NI -who assisted us with the research project which spawned this anthology- create platforms for people with dementia to share their stories, raise awareness and foster community. Writers like Wendy Mitchell have worked tirelessly to ensure first-hand accounts of living with dementia are increasingly available. In my own neighbourhood, which is dementia friendly, we’ve had people with dementia volunteer at our arts festival, greeting everyone with a warm welcome as they arrive at events. Encountering so many people who live bravely and brilliantly with dementia has removed a lot of my preconceptions and fears about the illness. When positive stories like these are more highlighted, the stigma associated with dementia is lessened and more people seek early diagnosis, accessing vital treatments and support.
However, I’ve also experienced the darker side of dementia. It can be an absolutely devastating illness. It impacts both the person with dementia and their loved ones emotionally, financially and physically. If I’m being honest, I’ve found it harrowing to watch friends and family members struggle with memory loss, communication and the dozens of different symptoms associated with their dementia. For all the wonderful programmes and opportunities which now exist, it would be wrong not to acknowledge that most people find it devastating to be diagnosed with an illness for which we don’t have a cure yet. In speaking and writing about dementia, we are always walking a fine line. We want to bring hope and emphasise that each person living with dementia remains a unique and vital human being, deserving of respect and dignity. We want to celebrate those who are living well with dementia. But we also have to be honest in how we speak about dementia and this means we cannot shy away from recording the harsher realities of the condition.
These stories try to disrupt perceived notions about dementia. In their diversity and authenticity, they honestly record the dementia experience with all its complex highs and lows
We hope we’ve managed to maintain this balance in this new anthology. The fourteen short stories included were written by some of the best writers currently working in Ireland and the UK. The collection sprung from a recent AHRC-funded research project based at Queen’s University Belfast. Over the last few years, a team of researchers lead by my co-editor and linguist, Dr Jane Lugea explored how dementia is depicted in the minds of fictional characters. We focused on contemporary novels such as Elizabeth is Missing by Emma Healy and Still Alice by Lisa Genova. Reading groups, which included social work students, carers and people with dementia gave us essential feedback on how these fictional depictions resonated with their lived experiences. All the writers commissioned for this anthology not only had access to the research findings but also a personal experience of dementia. Their stories come from a place of deep insight and an ethical commitment to recording a narrative which is not their own with the highest degree of accuracy and respect.
The stories in the anthology are diverse in both subject matter and tone. They go some way to addressing existing biases and gaps. I read almost 100 examples of dementia fiction during our research and was shocked to discover an overwhelming prevalence for white, female, elderly, middle-class dementia narratives. Some of the stories are really funny. Some are quite dark. Some of the characters are likeable. Some really aren’t. It should go without saying, people with dementia are just like everybody else, by which I mean, a pretty mixed bag. Above all, these stories try to disrupt perceived notions about dementia. In their diversity and authenticity, they honestly record the dementia experience with all its complex highs and lows. We hope that seeing the world through the eyes of a character living with dementia might facilitate a better understanding of the illness, fostering awareness and even empathy in readers, challenging harmful stereotypes.
Eventually we managed to pick a title, A Little Unsteadily into Light. It’s taken from stage directions in Samuel Beckett’s play Krapp’s Last Tape. In my reading I came across few examples of writing which better explores the dementia experience than this short piece of drama. Here, Beckett, who in his early career visited psychiatric wards, where he’d undoubtedly have encountered patients living with dementia, manages to capture the humour, pathos, profundity and confusion of trying to maintain an understanding of yourself as memory and language erodes. I think the phrase "a little unsteadily into light," is both a helpful and accurate summary of our writers’ attempts to strike that fragile balance between hope and honesty. These words also capture the idea of living as well as possible with dementia. Arguably, they speak to us all. For aren’t most human beings simply doing their best to move a little unsteadily into light?
A Little Unsteadily into Light is published by New Island
