Illuminating Loss: a study of the Capacity for Artistic Practice to Shape Research and Care in the Field of Inherited Genetic Illness

Donachie, Jacqueline (2016) Illuminating Loss: a study of the Capacity for Artistic Practice to Shape Research and Care in the Field of Inherited Genetic Illness. Doctoral thesis, Northumbria University.

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Abstract

Contemporary art is seen as an effective way of communicating complicated science to a range of lay audiences, particularly in the context of medical research. This is the premise of ‘sciart’. However this rationale can limit the cultural significance of artworks by overstating their illustrative capacity, an outcome that severely reduces the creative endeavour of the artist.

Based on the first-hand experience of an artist whose career has engaged with the opportunities afforded by ‘sciart’, this study seeks to address the illustration problem by exploring new methods of working across art and science that challenge representations of the inherited neuromuscular disorder myotonic dystrophy, a condition which affects one in 8000 adults in the UK. Hazel, a film made by the artist with the participation of eleven women affected by the condition, is placed at the centre of this as a case study. Pioneering work with the UK Myotonic Dystrophy Patient Registry facilitated recruitment, and it is this process that forms the unique contribution to knowledge of the research.

By illuminating the multiple loss experienced by families struggling with physical and social decline, this research offers a practical and theoretical image of the capacity contemporary artists have to shape research into myotonic dystrophy. The study will argue that this capacity is more ambitious than illustration, more extensive than the communication of family insights. Thus it can embrace a much-needed form of research leadership that is built upon an artist’s scope to say powerful things by withholding information. In addition, the employment of feminist literature on ageing and appearance, and sociological research into the decline and isolation of affected families, helps define the particular form of leadership that can arise through extreme personal circumstances.

As pressures on services increase, cross-sector influence becomes increasingly important and this thesis and body of practical work explores the future impact of contemporary artists taking a lead in shaping research agendas in the genetic sciences.

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