Naming the Invisible Patient: A Historical Dilemma

Aisling Shalvey reflects on the historian’s struggle to honour individuals represented in medical archives

The job of a historian is to be selective; choosing sources that reinforce your point of view, with issues that can be succinctly explained and problematised, and that can be resolved through one’s train of thought. But what happens to the sources that cannot yet be explained, that are left out? To the sources that are complicated, confusing, and unresolved? What about the duty of care we have to tell the stories that have been as of yet untold? What happens when, in choosing our sources carefully, we alter the narrative by excluding the difficult sources that are not so easily explained?

I recently finished my PhD, and like all new doctors, the weight of the words that had to be cut out to make the word count was heavy. In particular, there was one case that was not included in my thesis that stayed with me. My thesis focused on paediatrics during National Socialism in the Reichsuniversität Straßburg, and encompassed patient records from paediatrics, pathology and psychiatry. I intended to tell the story of the patient’s experience as far as possible, given archival constraints. I compiled databases and case records, and reunited pathology specimens with their names, humanising their experience 80 years after they were relegated to just a number in a medical journal. The experience was inspiring, therapeutic, and exhausting, and it gave me great confidence that I was able to right some of the institutional damage done by retaining human tissues from Nazi research. I imagine most historians can see where this was going, but the one case that kept me awake at night is the one case I could not name.

There was one newborn infant, hidden at the back of the attic with all the other specimens. I was the first person to see him, and to pick him up (in a jar of formalin) in 80 years. His entire body was intact and perfectly preserved, his little arms folded so as to fit in the jar, with a Y shaped incision on his chest indicating his fate post mortem. The top of his head showed the blonde wispy hairs typical of a new baby, but the top of his skull was opened to investigate what appeared to be hydrocephalus. His eyes were open, but sunken, and his cleft mouth was slightly pursed. Overall, he looked like he was sleeping, and didn’t seem to have been unwell. I expected to go to the archives and find more information on this infant, say his name, identify his parents, maybe find some information about his siblings, or on which street his home would have been had he lived long enough. The business card sized note attached to the jar simply indicated that he lived for five days, then died of hydrocephalus. In place of a name, he was known as 429/42. I searched every archive I could think of to find this number, to reunite his autopsy record with this jar, and hopefully then reunite this baby with the name his parents gave him. I spent two years searching for his name, but to no avail. In my thesis I listed all the specimens I had identified, presented the stories of children from the clinic, and was congratulated on how extensive this work was. But I never included this unnamed baby; I was disheartened at my inability to find his story, even though logically I knew that I couldn’t find records that weren’t there. I hoped in my viva that they wouldn’t ask me about unfinished work, or disappointments in my research, as this unnamed baby was the only thing I could think of. My viva came and went, and nobody asked me about it, as I had never mentioned it.

Even after my viva, this baby was still on my mind, to such an extent that I felt I needed to hear from other historians what they thought. Did other historians have similar experiences? Was anyone else disappointed at the limits of patient identification, which is such a seemingly small, but is in fact, such an immense task? I brought this case to the Northern Network for Medical Humanities Research conference this year, and the response was truly overwhelming. I realised that I was not alone in feeling an emotional affinity to some of these cases, and for feeling protective and disheartened when this aim of naming didn’t go to plan. Some of the reflections that came about as a result of this conference made me realise that the effort in naming patients, and telling their stories, is a constant battle that can’t be resolved within the temporal confines of a thesis. The catalogues that contain the names of individuals were created by the perpetrators, and they can only reflect the ideology in which they were created. As such, names of very young children, those without family members to care for them, the old, or the underprivileged are often not mentioned at all. This is not the fault of the historian, but it is the responsibility of the historian to bring these cases to light, even when they cannot be given a name.

Our responsibility lies in telling their stories, respecting their desire to be anonymous or known, and most importantly putting their experience into writing. Choosing to not write about these issues can result in gatekeeping, retaining these cases exclusively for those in the academy leads to defining what the appropriate response is.  Images, although often intended to be illustrative, can be performative, or used in voyeuristic ways. The image itself can be political, and has to be interrogated just as rigorously as a written source would. But in denying the reader an image, are we denying them an emotional connection to a case? When I saw the face of the unnamed baby, it had much more of an impact than simply seeing the case number on paper. In viewing these cases as exclusively medical, we deny the personal aspect, and perpetrate the inequalities that led to the transformation from individual person to medical statistic in the first place. At this conference there were examples shared from across the globe, with examples from different areas of expertise and historical eras. It truly seemed like everyone who had encountered this problem of the patient voice/patient experience and naming the patient were similarly impacted. In teaching historiography then, I believe we should not only focus on the big names that taught us these integral theories, and important processes on how to conduct this history in an ethical way, but to illuminate the emotional attachment that the historian develops to these unresolved cases. Following this conference, it appeared to me that I was not alone in thinking about these individuals, the difficult, unsolved, complicated cases, nor was I alone in being emotional about these people whom I felt I had failed in being unable to name them. As historians, it is our responsibility then, not only to be truthful and ethical in dealing with such complicated sources, but also to speak honestly about our experience when this doesn’t go to plan so that others can be prepared for the complexity of naming, or indeed, not naming.

 

Aisling Shalvey is currently working as a postdoctoral researcher and project coordinator at the German National Academy of Sciences (Leopoldina) on brain research during National Socialism. She recently finished her PhD entitled ‘History of Paediatric Treatment at the Reichsuniversität Straßburg (1941-1944)’ at the University of Strasbourg, for which she was funded by the Fondation pour la Memoire de la Shoah as a research fellow. Aisling continues to research the pathology specimens and paediatric cases from the Reichsuniversität Straßburg as a member of the historical commission for the Reichsuniversität Straßburg; this research group’s findings will be published later this year. Twitter: @ashshalvey

Leave a Reply

Your email address will not be published.

This site uses Akismet to reduce spam. Learn how your comment data is processed.

%d bloggers like this: