In 2023, researchers from University of Liverpool and Liverpool Hope University, in partnership with Chronic Illness Inclusion, Healing Justice London and Lantern Initiative, received funding from the Arts and Humanities Research Council (AHRC), one of 10 grants tied to the 75th anniversary of the NHS. This grant followed on from research funded by a British Academy/Leverhulme Trust grant in partnership with Chronic Illness Inclusion which showed that people with Energy Limiting Conditions (ELC) faced discrimination in accessing health and social care, often as a result of not being believed or listened to. Whilst that project focused on what is wrong in the current system, the AHRC project turned to creative methods to explore better futures of health and social care with (and for) people with ELC. Five artists facilitated creative workshops for people with ELC as part of this project. The creative workshops encouraged people to express ideas of a better future of care for people with ELCs. Workshops involved zine making, creative writing, fairytale writing, drawing, collage and mixed-media. The artists involved were Khizra Ahmed, Khairani Barokka (Okka), Julian Gray, Mish Green and Louise Kenward. The participants in the workshop produced creative work that the artists curated and the artists also produced their own work based on the discussions in the workshops about their own and participants’ experiences and hopes.
Julian Gray produced two forms of art for this project. He curated a published zine called “Another Future Is Possible” containing art work produced by participants in the workshop. Julian said “A particular piece of art I liked from this zine was “A Light Within Reach.” It has a lighthouse and it kind of represents that this person kind of feels out to sea, but then there's also like this light that's kind of drawing them in and giving them hope”. Julian also collaborated with Louise Kenward to create a comic book called “Freedom to Rest”. Louise wrote the story presented in the comic book and Julian illustrated the artwork. The story follows Joy who lives with an energy-limiting condition as she is transported into a fantasy world under the sea, where things are better.
Louise Kenward worked with participants using fairytales to explore a better future of health and social care for people with ELC. This resulted in a variety of tales told through creative writing and traditional fairy tales, from sleeping dragons to the Ugly Stepsisters in Cinderella. Louise said “my art reflects my personal experiences, I use a lot of observational material, photography, writing, seeking to hold a mirror up, a little like my psychotherapy practice when I worked for the NHS”. In addition to the comic book illustrated by Julian, Louise also wrote a fairytale short story called ‘Can You Hear Me Sing?’ which captures the isolation that many with ELC experience, and the hope for better futures through solidarity and being listened to. We asked Louise what piece of advice she would give an upcoming artist and she said “Persistence is key to maintaining an art and writing practice. Just keep going, at whatever pace, and in whatever way that suits your body, mind and brings you joy”.
Khizra Ahmed created an animation film using the art from zines produced by participants in her zine workshops with Muslim women with ELC. The animation looks at diagnosis, reflection on the progress of diagnosis and what the group gained from knowing about their ELC. Khizra also facilitated writing workshops which collated a range of zines about what needs to happen in the future for people with ELC. Khizra said “Storytelling is incredibly important in my practice. I strive to document, collect and archive untold stories and translate these visually for a unique and intimate experience”.
Khairani Barokka facilitated creative workshops with Muslim women that resulted in a collation of multi-media responses by the participants who attended the workshops. The participants were invited to use any medium of art to express themselves, which resulted in imagery, creative writing and abstract drawing. Khairani also produced an original creative non-fiction, which creates an immersive experience through writing and highlights questioning to allow the readers to think. When asking Khairani what barriers they face as an artist, their response was “accessibility and all other structural -isms, lack of understanding of disability justice, lack of belief”, this project is working towards breaking down these barriers and shining a light on disability justice.
Mish Green created a 45-minute audio performance piece called “Rx: Medicine from The Cripothecary”. This uses extracts from discussion with participants in the creative writing workshops that Mish ran as part of the project, and the title of the piece came from one of the participants. Relating to DaDaFest’s theme for the festival, we asked Mish what created rage in the industry for them. They said “I feel rage at how many of our big budget arts institutions still don’t have basic things like step-free access to their main stages. The message is clear in those places: disabled people are not the creators, the makers, the instigators, the performers. We’re welcome to sit quietly in the dark and clap, or at best have our work shared in the side spaces and round the edges”.
If this blog speaks to you, DaDaFest has given us the opportunity to share this work in the March festival. From the 8th March, join us online to look at the Gallery of art completed for The “Imagining Better Futures of Health and Social Care with and for People with Energy Limiting Chronic Conditions project” https://dadafestinternational.github.io/ELC/
And, if you are keen to find out more, meet the artists online on the 17th of March between 12pm - 2pm for a round-table discussion to explore better futures of care for people with energy-limiting conditions, building on rage from inadequate care.
Book tickets here: https://www.eventbrite.co.uk/e/imagine-better-futures-for-with-people-with-energy-limiting-conditions-tickets-1247567992449?aff=oddtdtcreator
The project was led by Professor Bethan Evans at The University of Liverpool, working with Dr Morag Rose (University of Liverpool), Dr Ana Bê Pereira (Liverpool Hope University), independent researchers Dr Aaliyah Shaikh, Dr Alison Allam, and Dr Anna Ruddock, Dr Stephanie Davis, Healing Justice London, Chronic Illness Inclusion, and Lantern Initiative. Everyone in the team has their own experiences of disability and / or chronic illness.