Narratives of Health, Life and Illness

Janet Mathieson reviews the one-day workshop ‘Narratives of Health, Life and Illness’ which took place at Wellcome Collection on 27th September 2019, jointly hosted by Wellcome Collection and the Consortium of the Humanities and the Arts South-East England (CHASE).

 

‘Narratives of Health, Life and Illness’ brought together twelve ECRs with a range of research interests from within the field of Medical Humanities. A unique selection of materials held by Wellcome Collection was examined across the three sessions, triggering lively debate and discussion about the unconventionality of illness narratives; finding (or imposing) narratives in artworks from a psychiatric institution; and how lived experiences of illness differ from medical dialogues. The day ended with a hands-on activity in which all participants embraced the opportunity to create a zine. (A chance to view the ‘Misbehaving Bodies’ exhibition after lunch, was also a fantastic complement to the day.)

Jane Hartshorn (University of Kent) provided an informative overview of the genre of illness narrative in her initial presentation on ‘Non-linear Narratives of Sickness.’ Traditional narratives, Hartshorn argued, with their easy logic, hope, and resolution, do not befit stories of chronic illness; illness demands a rethinking of narratives, new narratives. The chaos of living with chronic illness is better told through fragmented, plural and contradictory narratives. This was an apposite lead-in to an examination of a series of artist’s books which narrativise illness in innovative ways. Under the guidance of Elma Brenner from Wellcome Collection, we were shown, amongst others, Alexandra Georgiou’s 40598449, a powerful textile-based record of the artist’s experience of cancer and chemotherapy, the clothes she wore to treatments having been sewn together to resemble a book. A collection of Darian Goldin Stahl’s artist’s books were also particularly striking; these delicate, tactile works bring together scientific images and the artist’s sister’s lived experience of multiple sclerosis, highlighting the alienation that scans and diagnosis can bring to a patient and her loved ones.

Darian Goldin Stahl, Tiny Spots, Intalgio, toner, and encaustic, 4.4″ x 10,” 2015. Images courtesy of the artist.

Daniel Shipsides (University of Essex), introduced us to the life and work of Edward Adamson in the second session: ‘What narratives are portrayed in the paintings of the Adamson Collection?’ From 1946 to 1981, Adamson, foremost an artist not a psychiatrist, encouraged the inpatients at Netherne psychiatric hospital to produce artworks as therapy, many of which are now held in Wellcome’s archives. Little is known about some of these remarkable works and their respective artists, but a gallery of such works, anonymously displayed, invited us to consider what narratives could be read. The exercise was eye-opening, not only for the revelatory quality of the artworks – the portentousness of a baby in utero floating in red amniotic fluid for instance – but also for inviting us to question, in a Barthesian vein, how relevant prior knowledge of the artists might be and whether the judgements that we made about use of colour, style and content (for example) were rooted in our knowledge of origin of the paintings. What could be read into our own artworks, were we to produce some? As neither psychiatrist nor artist, am I qualified to interpret? Were these works meant to be viewed by others’ eyes? The therapeutic nature of art and its benefits was not disputed but some ethical considerations arose.

What is health? The final presenter Francesca Govia (University of Essex) posed this simple question, with no simple answer, in her presentation: ‘Defining Lived Experiences of Illness’. If, according to the World Health Organisation, health is ‘a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity,’ how many of us would deem ourselves healthy? So often, black and white definitions do not allow for grey areas, the complexities of being human, of what it is truly like to be ill or well. To prove this point, we were then given a diverse range of materials to look at on the subject of endometritis, each item approaching the condition from a different angle. Whether an academic thesis, with its focus on research and scientific data, pamphlets from a society set up to support sufferers decades ago or an individual’s vlog about the pain of the condition today, all texts play a part in understanding illness. Medicine offers one version of the illness and lived experiences another. Looked at in isolation, no one version provides an adequate insight, instead somewhere inside their collective arc we get closer to the truth of what an illness is, if indeed such a truth exists.

In the final session, a Zine Workshop led by Zara Carpenter, we were shown a variety of examples of zines (handmade magazines) about invisible illness. Deceptively simple in appearance, zines can pack a punch, can enlighten. Carpenter demonstrated how to make a zine, and then armed with scissors, stamps, coloured pens and inks, we set about making a zine on themes of our own choosing. It was pleasurable and rewarding to lose oneself in this activity, and at the end of the day we all had something physical to take away in addition to the mental stimulation.

There is certainly scope for further events like this in the future, events which dually provide access to rare materials and a generative exchange of ideas with archivists and researchers.  Thank you to Wellcome Collection, to CHASE and to all the presenters.

*****

After fifteen years teaching at both at home and  internationally, Janet Mathieson is studying for a PhD in Creative Writing at the University of Essex; she is seeking to create a new discourse about cancer, narrativizing this disease through the prism of a carer.

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