Delineating disease : a system for investigating Fibrodysplasia Ossificans Progressiva

This thesis explores a particular method of drawing which I describe as delineation. This is seen here to be a phenomenological activity. Its application within the setting of a rare congenital disease called Fibrodysplasia Ossificans Progressiva (FOP) suggests delineation as a viable method of revealing new insight and understanding of this phenomenon in a way that aims to dignify and remains respectful of the subject.

The use of the term delineation in this investigation originates from its use by the 19`s Century pathologist Sir Robert Carswell. It has been developed here to mean a drawing system that is realistic and based in observation. Unlike a scientific model, the activity of delineation is presented from the first person point of view and focuses on relationships that develop between delineator and object; and delineation and viewer. The emphasis is on coming to understand a phenomenon through the activity of drawing it.

In this thesis I show delineation as a way to record experiences continuously throughout the duration of an encounter, with focus on unique visual experiences as opposed to generic archetypes. Relevant detail is emphasized without additional embellishment or alteration of information, offering clarity to the understanding of the delineator and the viewer.

Collaborative workshops with medical illustrators and archaeologists were undertaken to understand differences and correlations between related practices. Evaluation included engagement with clinical experts, patients and a variety of informed individuals to establish an understanding of value in and consequences of the practice of delineation. A portable compendium of 66 delineations was created consisting of museum samples, living patients and the bodies of two donors undergoing processes of preparation for display. This has provided useful additional insight into FOP and has added evidence to support clinical studies concerning areas of ossification in a form that can be easily accessed and added to by future researchers. This inquiry shows that the activity of delineation has brought new knowledge to FOP by revealing detail of each specific phenomenon while preserving dignity and respectfulness.