Beyond Walls fellowships: Susana Cámara Leret
The Creative Research Artist Fellowships were created as part of the Beyond Walls programme of Art and Therapeutic Design at the new Royal Hospital for Children and Young People, Edinburgh. Susana Cámara Leret was one of the three Fellows. Throughout her fellowship, Susana researched health ecologies and the process of olfaction, from the remarkable ability of Joy Milne, who can diagnose Parkinson's Disease by smell alone, to exploring how fragrance on a molecular level can trigger memory.
Susana was the Design Fellow and has worked across art and design for the past ten years. She said, “My interest is in the overlap between science, art and technology. A lot of the work I develop is done in collaboration with research institutes and academics within the various disciplines. I explore the questions of what health is and how we deal with illness, especially chronic illness. I’m particularly interested in exploring these questions in relation to organoleptic properties (acting on, or involving the use of, the sense organs). I have worked with smells and the link to memory previously and carried this on during the Fellowship.
“I wanted to explore the issue that care is something that exists ‘beyond walls’. With my work on smell molecules, I was exploring how people related to them in and outside the hospital environment. The collaboration with the Neuro-Radiology team in DCN resulted from an anecdote. They told me how they insert a glue-like substance into the brain. They do this in stroke sufferers because it blocks the knot causing the problem in the arterial vein. It redirects the blood from the problem area. The patient’s body metabolizes the compound which affects the smell of their breath. Dr Peter Keston said he thought it smelled like artichokes and one of the nurses can't eat asparagus at home because it makes her feel as if she’s back on the ward!
“It’s this connection, what I call a ‘hyperlink’, between smells and memories or associations which allows for lateral thinking in a way I find fascinating. You might be smelling the same molecule but your reaction might be completely different to someone else because you have your own specific ‘paired’ memories and emotions. These are completely dependent on context and environment.
What fascinates me is that each smell is composed of combinations of molecules, meaning that one particular molecule can be found in many different smells in completely different contexts. The molecule released on the patients’ breath is shared with seaweed, bacteria, algae and lots of vegetables when you cook them. The Neuro-Radiology team call it the ‘onyx’ smell because the glue has a contrasting black colour in the imagery.
I was able to follow one of these procedures and I collected both the breath of the patient and the radiologist. I used balloons. I then used these breaths to create a series of glass vials. I’m interested in creating some kind of reflection of the breath or smell, a way to see the invisible, so I’m made metal stands to hold the vials and provide a reflection of the glass.
Fortuitously, I was part of an art-science symposium with Joy Milne, the woman who can smell Parkinson’s, and Alison Williams, artist and researcher who has Parkinson’s.
I was introduced to Joy by Dr Tilo Kunath at the Centre for Regenerative Medicine because I’ve been exploring the smell of Parkinson’s as part of the Fellowship. Joy and I immediately connected and we would do smelling exercises. There was a BBC documentary called The Woman who can Smell Parkinson’s about Joy and there’s a moment where I’m featured doing smelling exercises at the City Arts Centre.
Through Joy I met Alison and that took the work into a completely new direction. Joy can tell what stage the disease is by the different scent and by the time it reaches level 5 she can no longer smell the person, only the disease. We discussed the idea of ‘body talk’ and how the body communicates through the senses. Alison was keen to try and lessen the effect of the symptoms through diet and exercise. I provided a hospital suit and Alison wore this when she exercised. We cut up the suit and, with the help of Matthew Pauley at Herriot Watt University, distilled the sweat. I liked the idea of exploring what remains and what’s left behind – is what we distilled Alison, the Parkinson’s or both?
We came up with the idea of Three Suits, one suit representing the traditional medical process, the second representing the process of fragmentation and distilling we did, and finally the last one where Alison and Joy took control of the process. Joy embroidered her perception of the five levels of Parkinson’s onto the suit. Alison embroidered her narrative about the disease but she turned the suit round so that the back became the front, like a symbol of her trying to control her own body. These suits became like a ‘platform’ or shared framework where we could discuss and explore. It was the experience of a patient who is living through the progression of the disease and a person who can decipher that progression through smell, but who was also the carer for her husband who died of the disease. It was the unofficial story which does not appear in the case-notes.”
