Windows of the Soul: Co-creating artworks to understand visual impairment

Siegfried is a vitreoretinal fellow at Moorfields Eye Hospital and an Honorary Senior Research Fellow at UCL. He had ten years of medical training and clinical practice under his belt before embarking upon a research career. As a second-year PhD student in the Institute of Ophthalmology in the faculty of brain science at UCL, Siegfried took up the opportunity to explore how engagement might enrich his research. He talked to Siân Aggett, who wrote this blog, about how engagement worked for him.  

Siegfried’s research explored how eye scans, like those you might get from a high-street optician, could become an valuable tool for the early diagnosis and prediction of general health conditions, in particular, dementia, heart attack and stroke. By scanning the blood vessels at the back of the eye, “We’re essentially seeing a window to the rest of the body” Siegfried explains. His engagement work was inspired by his patients. 

“People would come in with drawings, or they’d come in frustrated because they couldn’t articulate what they were seeing… everyone experiences visual change in a different way!” – Siegfried

It was these drawings that led Siegfried to the idea of involving artists. He wanted to create an exchange between patients’ subjective experiences and the outside world. He had given formal talks and conducted patient surveys before but felt the urge to move towards something more collaborative. He wanted to learn more about public engagement.   

“Medics might present to the public or perhaps college feedback on a research study because they’re submitting something to the ethics board. That’s important but arguably not as deeply impactful and meaningful as something collaborative.” – Siegfried

An idea emerged through conversation with UCL’s central engagement team and with his peers. A co-created arts exhibition which could ignite conversations about the lived reality of living with sight impairment and loss. 

His department publicised his project and another researcher, Caroline Kilduff, who had been thinking along the same lines got in touch. She planned to bring professional artists and visually impaired patients together to co-create artworks. 

Caroline and Siegfried brought together a team of volunteers which included visually impaired artists, patients, and other professional artists. Siegfried and Caroline both invited patients into the project and advertised for participants through various charities such as Fight for Sight and the Macular Society. Consultants in Moorfields Eye Hospital heard about the project and also got in touch. 

“They were like, ‘Oh, I have a patient who is really interested in art, and she often shows me her paintings!” – Siegfried

Eventually, the works made included Braille art, traditional painting, print work, tactile work, icons, sound art, prose, and animation. Together they communicated multiple subjectivities (both visual and emotional) from people living with visual impairment. Plans were made for an exhibition. It was 2020, however, and the Covid outbreak threw a spanner in the works. Still, Siegfried was not derailed and took the project into a digital space where visual works could sit beside people’s personal stories, written and audio. 

“I think blind people making art subverts a damaging presumption that if you can’t see, you can’t engage with visual practices. Yes, we can – let us show you.”  – Maud Rowell, Journalist, Writer and Visually Impaired Contributor to Windows to the Soul

Understanding the value of the project, Siegfried’s supervisors helped him access support: 

“When you’re doing a project about something like visual impairment and art, it is amazing how generous people are with their time or with resources.”  – Siegfried                

His PhD subsidiary supervisor, Jugnoo Rahi, introduced him to the director of Bloomsbury Festival who provided the means to do what Siegfried had originally intended, to show the works in a physical public space. Bloomsbury Festival provided a venue, ushers and curation expertise as well as marketing. Another supervisor introduced Siegfried to a start-up organisation called ‘Loft Digital’ which built a website for the project at no charge. This supervisor also helped him to access another small grant from the Wandsworth Arts Council, which funded a second exhibition which they ran in Vauxhall in summer 2022.  

Siegfried feels that he learnt a lot through delivering this project which he would not have developed focused solely on research. This includes skills such as project management, managing partnerships, grant writing and evaluation. Challenges were learning opportunities. He is now more experienced in commissioning and contracting artists. He also now thinks more deeply about issues of equity in what he does. 

“Rationing the funding support we give to ensure everyone has equal opportunity to engage is really difficult.” – Siegfried

Siegfried’s clinical practice and research have also benefitted through having engaged with patient stories.  He reflects more sensitively on his approach in clinical interactions having heard stories from people’s childhood. “The words we say in the clinic can be quite isolating”, he shared. One patient artist created an audio piece, inspired by his experiences in the eye clinic as a child when he was losing his vision.  

“Every time he came to the eye clinic, people would say, ‘Can you read this letter on the chart?’ He’d never been able to read any letter from the chart and repeatedly being asked reminded him of the severity of his sight loss. If someone had just looked at his notes, they would have never asked him that question.”  – Siegfried

Siegfried believes that not only has his career benefitted from his project but that not having engaged would have had a negative impact. 

“If I hadn’t done Windows of the Soul it would have quite negatively affected my research career!”  – Siegfried

He continues to liaise with participant patients around his research, “They are a great soundboard for getting a public opinion about the idea of using eye scans and understanding the potential shortcomings.” As well as this he has now written three or four grants research grants, each with a required element of public engagement embedded in it. He is confident that these were of a far higher quality and more meaningful than anything he would have proposed before this hands-on experience.  

Visit the Windows of the Soul website to find out more about the project and visit the online exhibition.

Visit Siegfried’s UCL Profile.

This blog was written by Siân Aggett.