Strange country: explorations through the territories of motherhood and child disability : consisting of an exegesis (60,000 words) and a creative work of memoir (40,000 words)

In this thesis, I explore the country of motherhood and child disability through research and creative practice. The 60,000 word exegesis investigates the stories that are told about mothers of children with disabilities. In the first part, I examine the ways in which these mothers are represented in the academic discourses of social science, philosophy and disability studies, and how these narratives both inform and are informed by dominant socio-cultural scripts, such as those found in the media. In Part Two of the exegesis, I turn to questions of self-representation. I delve into the ways mothers - and fathers - of children with disabilities narrate their own stories, and negotiate their own identitles and those of their children, in their autobiographical writing. The 40,000 word creative work, selections from a memoir of my own journey through this strange country, consists of a collection of stories, essays, reports and dreams about my daughter, myself and our relational others, held together through the metaphor of the mosaic. As research, this work inquires into the way prevalent social scripts, research, other parental narratives, and lived experience combine, interact, interfere, and sometimes collide in the formulation of story. In this thesis, I explore the country of motherhood and child disability through research and creative practice. As the mother of an adult daughter with a severe intellectual disability, my lived experience underlies this work at the deepest level. To interrogate this territory, I have had to distance myself from its normalising processes, and so re-make it as ‘strange’. The 60,000-word exegesis investigates the stories that are told about mothers of children with disabilities. In the first part, I examine the ways in which these mothers are represented in the academic discourses of social science, philosophy and disability studies, and how these narratives both inform and are informed by dominant sociocultural scripts, such as those found in the media. A current of marginalisation flows through much of this discussion, relieved by possibilities offered by feminist care ethicists, in particular the work of Eva Feder Kittay. In Part Two of the exegesis, I turn to questions of self-representation. I delve into the ways mothers – and fathers – of children with disabilities narrate their own stories, and negotiate their own identities and those of their children, in their auto/biographical writing. Drawing upon relevant scholarship (Couser, Frank, and others) to analyse a sample of fifteen texts (solo works by mothers and fathers, as well as anthologies), I explore issues of generic expectations, authorship and entitlement, emplotment strategies, and the ethics of writing about one’s own vulnerable child. A major consideration is to what extent these parental authors challenge – or comply with – prevailing representations. Of particular concern also is the effect of gender: how the stories told by mothers and fathers differ, and why those told by fathers have garnered more attention in both the public and academic spheres than those by mothers. The 40,000-word creative work, selections from a memoir of my own journey through this strange country, consists of a collection of stories, essays, reports and dreams about my daughter, myself and our relational others, held together through the metaphor of the mosaic. As research, this work inquires into the way prevalent social scripts, research, other parental narratives, and lived experience combine, interact, interfere, and sometimes collide in the formulation of story.