About the Connecting Narratives project

The ‘Connecting Brain Tumour Narratives’ project was a Leverhulme-funded artists residency, with me (Immy Smith) as artist in residence at Portsmouth University’s Brain Tumour Research Lab. The aim of the residency was to;

  1. use art to investigate, illustrate and connect brain tumour stories; both of patients, family members, and carers affected by brain tumours, and research scientists in the lab
  2. broaden the horizons and enhance the skills of both artist and scientists, through interdisciplinary research.
  3. study the imagery and objects important to different people involved in brain tumours and their research, looking for connections and sharing their narratives with a wider audience

Links; Brain Tumour Research - UoP Brain Tumour Lab - Leverhulme Trust

Ink patterns made with scientists in the lab, & with participants at public events

Artwork from the 'Patterns of Mutation' exhibition

Why brain tumours?

Brain tumours are a uniquely difficult form of cancer to treat; access to our brains is constrained by our skulls, and the brain is something no-one can do without or replace! Brain tumours are highly variable - they may contain different populations of cells, some of which can be very resistant to treatment. Cancerous cells in a brain tumour may infiltrate surrounding brain tissue, hiding in plain sight, and making the edges of brain tumours hard to find for surgeons. The consequences of this can be devastating for patients and their families.

Despite brain tumours being the most common solid tumour of childhood, and the leading cause of cancer death in adults under 40; research into brain tumours receives a very small proportion of total cancer research spend. Brain tumours are under-funded and under-studied. How can we investigate the unique nature and challenges of brain tumours with art? How can we help raise awareness and illuminate the human stories behind these cancers? How can we share our hope for the future as well as the stark reality facing people affected by brain tumours? Those are the questions that drove this interdisciplinary residency.

 

Making large scale ink patterns based on cellular rules

Working with brain tumour patients & families

In this project we received ethics committee approval to enable me to work with patients, their friends, & family members. I approached asking for patient’s memories as if we were asking for a blood or tissue sample. We treated the stories I collected with the same confidentiality, care, and rigor that is applied to biological material; just the method of collection and expected output were different to most research in the lab. I think the ethics committee and the project participants appreciated that.

All the brain tumour patients and family members had a very strong sense of purpose in sharing their stories. They own their narratives, sometimes very fiercely, and want to use them against brain tumours and their devastating effects. Patients and family members want to be heard, and identified – everyone was offered anonymity, no one took it. Really, I was a translator for them in this project. Art is another means of disseminating their stories, and their urgency in trying to address the lack of funding and resources for brain tumour research. This is not a job for anyone with a big ego… I feel humbled by the strength of the people I have met, and proud to help them share their narratives. But they are not my stories. I just drew them. All the pages from the Connecting Narratives book, which contains artwork from patient, family, and scientist's stories, are in the slideshow below.

 

The pages of the Connecting Narratives book

 

Working with scientists

In working with scientists daily in the brain tumour lab, I felt the privilege I gain from being interdisciplinary - I'm a scientist with a PhD in neuropharmacology, as well as an artist - very strongly. It can be difficult for scientists to trust that an outsider being in the lab won't accidentally be detrimental to their experiments, which often take weeks or months to set up. The fact that I have laboratory experience made it easier for lab staff to trust me; I've felt the pain of a science PhD that involved cell culture, so they knew I wasn't about to jeopardise their work, however inadvertantly, through a lack of knowledge of lab procedures. Nevertheless, I very much treasure their trust in allowing me to make art at the bench, and their willingness to join in and experiment in a new way with new materials - ink, pencils, and patterns!

 

Giving scientists a view of the studio; two workshops for scientists; making giant ink patterns using a webcam to help scientists see the process

Working with scientists; the 'Ugly Objects' experiment

In 'Ugly Objects', we explored what is considered ugly or unpleasant. PBTRC staff didn’t want me to use images of brain tumour cells under the microscope in art for public exhibition – because they look beautiful. Scientists really wanted me to show brain tumours as ugly. But what exactly is ugly? In their minds, staff separated brain tumours from their patients and considered them distinct from the person. Different & unpleasant entities, killer diseases. But how to make them ugly, when ugliness is subjective and can be hard to pin down? Everyone agreed ugliness is not actually a property of how people look, and nobody wanted to suggest patients themselves were ugly. But is ugliness as a feeling even possible to portray?

The art below represents some of our output from this experiment. We did not reach a conclusion on how to best pin down the feeling of ugliness the scientists described. But perhaps that was part of the value of this part of the residency; art can help tackle subjective concepts that are hard or impossible to measure, and problems that may not have a neat resolution. We can explore the human experience of brain tumours, and working in research, more fully when we use both art and science to approach it. Art and science give us different yet complimentary tools to explore, describe, investigate, and understand diseases - and the ways we try and find treatments for them.

 

Ugly Solid Objects - from the Ugly Objects experiment