From 2010-2011 I was a ‘Bright Ideas’ Visiting Fellow at the European Genomics Forum (EGF), University of Edinburgh. My aim was to explore and write factual or fictional accounts of some of the people whose tissues and organs came to be publicly exhibited in the Surgeons’ Hall Museum, Edinburgh.
As a contrast to these stories of past ‘donors’ I felt it was important to find out more about the way in which we now treat donation and collection of organs and tissues, for both teaching, research and transplant purposes. The stories of the people who responded are recorded in the EGF archive.
The great anatomy and pathology collections were initially intended as aids to teaching, but their purpose has changed with time (see the perceptive article, ‘Making sense in the pathology museum‘ by Dr Steve Sturdy, formerly EGF’s Assistant Director). The collections at the Surgeons’ Hall Museum (SHM) in Edinburgh date from the late 17th century and it is impossible not to wonder about the people – the ‘patients’ as Andrew Connell, the then Collections Manager, touchingly refers to them – whose organs and skeletons are in storage or on display.
These exhibits were ‘donated’ by human beings, each of whom had a life, perhaps in a town, on a farm, perhaps with a family and friends; or perhaps he or she was ridiculed and despised.
I had previously been shocked out of being a detached observer when I visited exhibitions and museums researching background material for my novel, The Embalmer’s Book of Recipes: at the Museum Vrolik in Amsterdam, the clatter of coffee cups being laid out for a conference, the loud talking and laughter of men repairing the heating ducts, the bright lights and chrome and glass of the display areas, suddenly clashed agonisingly with the contents of the jars – late-stage foetuses and neonates, each with some developmental or genetic abnormality. These specimens were once, briefly, sentient beings, brought into the world by their mothers, women of all ages and backgrounds, privileged or poor, who may or may not have had the sympathy and support of family or friends.
And so began my need to explore and write the stories of some of those people whose tissues and organs came to be publicly exhibited – in this case, in the Surgeons’ Hall Museum, Edinburgh.
Some of these ‘specimens’ were certainly obtained without the patient’s consent, and Andrew Connell’s musings (see “The Curator’s Reflections” ) helped me to understand why the patients might have been brought to such straits, in hope or fear or ignorance.
I was further helped in my hunt for information by Laura Brouard at the Lothian Health Services Archive in the University Library; by staff at the National Library of Scotland; and by Anne Carroll, archivist at Perth Library.
It was a special privilege to meet and spend hours talking with artist Joyce Gunn Cairns, who has drawn several of the exhibits at the Museum with great delicacy and empathy and allowed me to include her drawings and words. Poets Christine De Luca and Diana Hendry had also written about some of the exhibits – ‘Janet’ and ‘Andrew’ in particular – and to listen to them talk about their subjects was a great pleasure and gave new insights (and to hear Christine read in the Shetland dialect was an extra treat); they too have been happy for me to include their poems.
Part-way through my Fellowship, I organised a meeting that included a lawyer, a bioethicist, the curators, the poets, scientists, sociologists and writers and we had a very helpful and thoughtful discussion about my research and writing, and its ethical implications.
Finally, in February 2013, the EGF organised a well-attended ‘Tell them our stories‘ event for the public in the University’s Anatomy Theatre. The SHM’s Curator Andrew Connell and I both presented illustrated talks; poet Diana Hendry read her moving poem about ‘Andrew’, and actor Michael Flett gave an excellent and very funny reading of ‘Caesar’s story‘ (an extract from my ‘The stories of Janet and Caesar‘)
Steve Sturdy, 2006, Making sense in the Pathology Museum, in Anatomy Acts: how we come to know ourselves. Eds Dawn Kemp & Andrew Patrizio; Birlinn.