“Telling their stories”

1. Of organ donors, willing and unwilling: 'Tell them our stories'

From September 2010-March 2011 I was very fortunate to hold a 'Bright Ideas' Visiting Fellowship at the ESRC's Genomics Forum in Edinburgh, in collaboration with the Surgeons' Hall Museum, and the stories that resulted from this work are now available online on the Forum's new Creative Space.

I researched and wrote the human stories of some of the exhibits in the Museum's renowned anatomy collection and, as a contrast, interviewed and wrote the stories of several donors (and potential donors) and collectors of tissues and organs.

You can choose whether or not to donate your body for plastination and exhibition: 'Janet Hyslop' couldn't. You can choose to sit for an artist to have your deformed face painted: 'Mrs Fraser' probably had no choice about her painted plaster 'life-mask'. You can choose to give your blood, your kidney or your eyes - and you may have many reasons for doing so but, whether simple or complex, they will be consequent upon your own humanity and your life and the lives of those around you.

The Gallery in the Surgeons' Hall Museum (photo: Ann Lingard)

 The collections at the Surgeons' Hall Museum in Edinburgh date from the late 17th century and it is impossible not to wonder about the people - the 'patients' as the Collections Manager touchingly refers to them - whose organs and skeletons are in storage or on display. For 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 earlier been shocked out of being a detached observer, a scientist/writer carrying out 'research', when I visited exhibitions and museums as 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 Story) helped me to understand why the patients might have been brought to such straits, in hope or fear or ignorance.

It was as a contrast to these stories of past 'donors' that 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 and transplant purposes.

"Are you sitting comfortably?", my Keynote Talk at the Genomics Network's 2012 Conference, Genomics in Society: Facts, Fictions and Cultures, was an attempt to discuss the writer's dilemma in writing these stories'.

2. Of the volunteers from the Lothian Birth Cohorts, 1921 and 1936: 'Lifetimes'

A collaboration with Professor Ian Deary and his team at the Centre for Cognitive Ageing and Cognitive Epidemiology (CCACE), University of Edinburgh, from January 2012. I am having the great pleasure of meeting some of the participants from the LBC studies - older people in their 70s and 90s - and listening to them, and writing their 'stories', as part of the ongoing studies on ageing and cognition in which they are participating. Regular updates will appear on the CCACE site.