Within A Forest Dark in the ESRC Festival of Social Science at Eastbourne's Towner Art Gallery

It was my privilege to join international experts in infectious diseases on stage at Eastbourne's Towner Art Gallery on Tuesday evening with as part of the Brighton and Sussex Medical School's outreach event in the ESRC Festival of Social Science. The event was organised by Dr Gem Aellah, Research Fellow with the Social Science for Stigmatising Skin Diseases Foundation.

With Addisu Tsegaye, Dereje Wonde, Jackie Cassell, and Jo Middleton at the Q&A at the Towner on Tuesday 8.11.2022. Photo by Esther Garibay

This event comprised two screenings. The first was a film of a workshop performance of a short opera, Within A Forest Dark, about the experience of transition to care home, losing one's way, while keeping one's humanity - but then experiencing an infection called scabies. This short opera was conceived by Prof Jackie Cassell, with a libretto devised by Peter Cant, music by me (Ed Hughes) and tested in the ACCA on a single day with a mix of three amateur and two professional singers. It opens up a methodology of artistic transformation of everyday testimony - as a means to conveying important information while also carrying the emotion and experience, what it feels like to be human in other words.

The second was a documentary called 'The Agony of the Night' by independent Ethiopian filmmaker Eyerusalem Kassahun from the 5S Foundation, which captures testimonies from people affected by this condition and the health workers treating them. Dereje Wonde, a PhD researcher from BSMS and lecturer of sociology at Bahir Dar University in Ehtiopia, has been doing ethnographic work to explore scabies incidence and management in rural communities, including among the religious students potrayed in the documentary. He was present at the Towner to introduce the documentary and discuss questions raised by this important film.

Gem introduced the event by pointing out there are commonalities between Eastbourne and Ethiopia. Although very different the opera workshop and the documentary also share the idea of using an unusual approach to get across what it feels like to be a human in a particular place and time - what it feels like to have this disease, in two very different corners of the world.

Jackie contextualised the opera screening by introducing herself as an infectious disease control specialist whose interest in scabies was sparked when she worked as a junior doctor in Eastbourne. An old man was brought in because he'd slit his wrists due to the terrible itching he'd been suffering. The ward realised he had scabies and treated this. Jackie thought it was a one-off until some years later was working as a public health trainee and noticed it occuring in carehomes. The infection can be quite difficult to understand if you are additionally experiencing degrees of dementia. In care homes touching is an important part of daily contact. So Jackie ran an exhibition in Canterbury about her research, at which she spoke to many people - including about their experiences as patient, relative, doctor and carer. It was after this that Jackie approached me about creating an opera as an unusual way to communicate research and important information.

I've written operas for professionals but also due to work with Mahogany Opera Group, and Peter Cant - the writer, director and theatre maker, I've worked with young people and children. I was immediately captivated by the idea of setting words spoken by people coming from very different perspectives addressing the same challenges - on transition to care home and the experience of scabies. This included Joy - a carer who recalled the difficult experience of being treated herself as a child. And a Junior Doctor, whose words on the difficulty and courage needed to call an outbreak - spoken with a combination of professionalism and a powerful sense of the human dilemma, which itself makes the sense of stigma that persists very real. Peter Cant came up with a powerful dramatic sequence, by mixing the contemporary testimony with images from medieval literature including Dante (Canto 29 from the Divine Comedy) and Chaucer (The Pardoner's Tale). These created sudden cuts or switches between really modern words and these ancient images which transcend the centuries. The workshop was a while ago - and I wish we could have done more - but I've always remembered the power of setting words simply and following the natural rhythms of the speech - and that is affecting and can help to share the emotion and the experience behind what's going on.

It was an event that reminded one that finding unusual ways to communicate important messages on public health can be effective, as well as conveying the human experience and dilemmas for all involved including professionals, families and patients.