My presentation contains many images from my PhD Delineating Disease: a system for investigating Fibrodysplasia Ossificans Progressiva that were not presented to the public for reasons I will discuss.
Drawing hidden truths
How do you show disease in a way that reveals new insights, is clear, informative, is understandable to members of the public as well as to medical experts, and yet remains respectful to the subject? And what if this research is also set within the context of the medical museum where processes of preparation and display must also be considered?
In an artistic research PhD, a system using drawing as a valid research methodology to investigate a rare disease was developed. It presented a breadth of experiences of a disease called FOP and also revealed the disease within the context of museum conservation and display. The activity of drawing was shown to both initiate the act of looking and evidence the journey of understanding taken during this process. It involved actually spending time in the presence of people and objects, and forming relationships. This commitment maintained dignity and respect for people and objects, and the drawings were seen to be informative and sensitive. Drawing was used not merely to record, but as a participatory activity. Evidence showed the research revealed new insights, confirmed medical opinions about the progression of the disease and presented a far greater breadth of experiences of FOP than previously seen.
But the impact of this research also had unexpected consequences. Certain drawings were not included in the exhibition that formed part of the final research exposition, as they were deemed unsuitable. Medical experts were ‘shocked’ by drawings presenting the methods involved in preparation of donors with the disease. These processes integral to the research, hidden behind the scenes of the museum, were not what the experts had expected to see.
But the greatest impact was on the people with FOP. I was completely unprepared for their reactions when they saw drawings of the disease. Their responses to being drawn were positive. They appreciated someone looking at them without staring, spending time with them, bothering to see them. Despite having seen their own X-rays, CT scans and read medical books, when they saw other drawings of FOP they were shocked. Unlike medical imaging, which requires training and experience to ‘read’, they ‘understood’ the drawings and felt their clarity revealed the hidden, terrible truth. They acted like a mirror. Conversely, they also felt it was vital the research was shown to make people aware of this rare disease. The responsibility of this is something that has weighed heavily on me. Despite the research being seen to be valid, insightful and useful, it also had unseen consequences. What form of exposition should these contentious elements take, should they be shown at all?