Whispers in the Dark: A Critical-Creative Exploration of Lived Experiences of Myalgic Encephalomyelitis (M.E) and Long Covid Based on a Collaborative Audiobook Listening Practice
Jackson, Arlene
Abstract
This thesis is composed of two parts: a novel, Dear Listener, and a critical commentary. The latter traces my qualitative autoethnographic research project involving people who share my diagnosis of Myalgic Encephalomyelitis (M.E), a chronic, multi-system disease with no definitive prognosis.
Through an asynchronous research practice, we listened to the audiobook of Joshua Ferris’s (2010) novel The Unnamed, with a view to examining how new knowledge may be gained by investigating the listening and making-meaning process of individuals with sensory and cognitive disorders specific to M.E; how that knowledge may influence narrative structure and narrative style in the creation of a new work of fiction and in what ways this may challenge ableist and normative assumptions.
To identify subjective reactions to The Unnamed (2010), participant responses were contextualised around Havi Carel’s (2019) text Illness: The Cry of the Flesh, wherein she advocates for a phenomenological approach to illness.
The creative response, Dear Listener, is a contemporary literary novel set in Glasgow; influenced by participants’ experiences of their illness as complicated by a medical, social and gendered contestation of M.E. Centring three women, the novel’s structure of alternating chapters follows the tidal form of our illness narratives, moving back and forth in time to portray the characters’ lives before illness, during diagnosis and as they move towards acceptance, after converging at an audiobook listening club where they foster a new community founded on adaptation and resilience.
The creative and critical elements of this thesis align to represent lived experiences of M.E as undeniably linked to the social, cultural and political, offering an original contribution to the fields of literary studies, critical disability studies, literary disability studies, cultural disability studies, the medical humanities and feminist theory.
Web | Thesis: Manchester Metropolitan University | Text will be available on: 31 March 2028
Jackson, Arlene
Abstract
This thesis is composed of two parts: a novel, Dear Listener, and a critical commentary. The latter traces my qualitative autoethnographic research project involving people who share my diagnosis of Myalgic Encephalomyelitis (M.E), a chronic, multi-system disease with no definitive prognosis.
Through an asynchronous research practice, we listened to the audiobook of Joshua Ferris’s (2010) novel The Unnamed, with a view to examining how new knowledge may be gained by investigating the listening and making-meaning process of individuals with sensory and cognitive disorders specific to M.E; how that knowledge may influence narrative structure and narrative style in the creation of a new work of fiction and in what ways this may challenge ableist and normative assumptions.
To identify subjective reactions to The Unnamed (2010), participant responses were contextualised around Havi Carel’s (2019) text Illness: The Cry of the Flesh, wherein she advocates for a phenomenological approach to illness.
The creative response, Dear Listener, is a contemporary literary novel set in Glasgow; influenced by participants’ experiences of their illness as complicated by a medical, social and gendered contestation of M.E. Centring three women, the novel’s structure of alternating chapters follows the tidal form of our illness narratives, moving back and forth in time to portray the characters’ lives before illness, during diagnosis and as they move towards acceptance, after converging at an audiobook listening club where they foster a new community founded on adaptation and resilience.
The creative and critical elements of this thesis align to represent lived experiences of M.E as undeniably linked to the social, cultural and political, offering an original contribution to the fields of literary studies, critical disability studies, literary disability studies, cultural disability studies, the medical humanities and feminist theory.
Web | Thesis: Manchester Metropolitan University | Text will be available on: 31 March 2028