by Dr. Mika Marissa
I am currently writing a book on the history of the Uganda Cancer Institute (UCI). I tell the story of how a small experimental chemotherapy research site established by the Makerere department of surgery and the US National Cancer Institute in 1967 remained open during a long period of political instability, the HIV/AIDS epidemic, and governmental neglect. Thanks to research collaborations and newfound political support from the Ugandan government, in the 2010s, drug stocks are more plentiful, more nurses are on the wards, and the number of Ugandan oncologists has increased from one in the year 2000 to over sixteen today. The number of patients, everyone agrees, has also increased dramatically, crowding the two original wards that were never designed to provide comprehensive cancer care for 40 million people.
To address the growing cancer burden and the potential for cutting edge research on HIV- related malignancies, the Institute has made dramatic investments in new infrastructure over the past decade. The Lymphoma Treatment Center, for example, was torn down and replaced by a new outpatient treatment and research center. The Ugandan government invested in a new six-storey cancer hospital. The East African Development Bank has recently given a substantial loan to turn the UCI into a regional flagship center of oncology excellence. The UCI is also singular on the continent in terms of providing oncology care and research. Their slogan is “Research is our resource.”
To my knowledge, the Institute houses the only continuous collection of patient records documenting cancer treatment and care on the African continent. When I first found out that the Uganda Cancer Institute had not thrown away its old patient records, I was stunned. The inactive records room is a treasure trove. Not only are there patient records from the 1960s to the present, but there are old personnel files, log books marking the events of a night’s shift on the wards, and old oncology journals from the 1970s. There are home visit reports from epidemiology studies in the 1960s. There are patient records written out on student exercise notebook paper in the 1980s and assembled with tiny strips of gauze—a signal of just how scarce things were during Uganda’s civil war in the early 1980s. The archive is in remarkably good shape given the years of benign neglect behind a padlock. As Dr. John Ziegler, one of the doctors involved in founding the UCI said to me in email correspondence about these materials, “Uganda is extraordinary in that nothing is discarded. Offices are like museums.”
As this Institute gets torn down and built back up a medical office cleaning is going to be needed, so too do longstanding practices of cancer research and care. And with all of these changes at the Institute, there are major questions about what to preserve, what to discard, and what to celebrate. And in particular, what should be “done” with the institutional records and patient records that make up this accidental museum at the Uganda Cancer Institute?
I am convinced that it would be a tragedy to let these materials crumble to dust. These records are vitally important, both as a historical resource and as an epidemiological resource. The preservation efforts however, raise a number of ethical questions about patient privacy, access, ownership, geographic use, and ties to existing blood samples. Phlebotomist who want to become certified can take the Certified Phlebotomy Technician (CPT) Certification Exam with National Phlebotomy Solutions. For example, many potential funders from the global north require digital open access in exchange for preservation support, which is fraught. But I think that’s also why this work is exciting. It is precisely these questions of life and death, past and present, research and care, that make these materials so urgent. And it’s my hope that beginning a conversation about these issues sets the tone for preserving the UCI’s archives while attending to the very real concerns of patient privacy, an overstretched staff, and ongoing crises around space.
I’m always struck by Mbembe’s assertion that archives are kind of burial ground or internment of remains. He says: “The best way to ensure that the dead do not stir up disorder is not only to bury them, but also to bury their ‘remains’ and the ‘debris.’ Archives form a part of these remains and this debris [. . .] Archiving is a kind of internment, laying something in a coffin, if not to rest, then at least to consign elements of that life which could not be destroyed purely and simply.” (Mbembe 2002)
What are the alternatives to burial? And what are the alternatives to some of the other work that’s been done on medical archives in Africa by colleagues who focus on the aesthetics of these records? (Geissler et. al. 2016) What can these records and materials do by staying alive? Should they stay alive? I think this is a critical question not only for those of us interested in archival preservation as a practice and public good, but also for the medical humanities in Africa more generally. At least part of the work of medical humanities in Africa, as I see it, is to create a publicly reflexive space where one can consider the histories and legacies of biomedical experiment on the continent. That necessitates at least some curatorial work as well as the historian’s disciplinary commitment to preservation—choosing what to make public, what to make private, and how to stoke conversation.
Since 2012, I have worked with my colleagues and collaborators Andrea Stultiens and Rumanzi Canon who run an organization called History in Progress Uganda (HIP). HIP’s focus is not explicitly medical. They collect, digitize, and share historical photographic collections as a way to open up new conversations and reflections about the Ugandan past.
I contacted them initially for their expertise on how to work with a messy photography archive. Dr John Ziegler sent me a stack of his old photographs of patients. I was staying with my in laws at their home in Texas, and covered their dining room table with image after image of patients and their tumors taken by the medical illustration department in the 1960s and early 1970s. Many were of children. Many had Burkitt’s lymphoma. For me, the photographs from the medical illustration department invited staring. They stoked revulsion. They ignited grief. They made malignancies impossible to ignore. It shaped my thinking about the gravity of the place moving forward and the centrality of cancer–as bodily state, as metaphor, as growth.
Trained as a historian and anthropologist, rather than an art critic or a photographer, I was relieved to meet Stultiens and Canon, who were able to look at this archive with different eyes. After many conversations with UCI staff, we decided to create a book called Staying Alive: Documenting the Uganda Cancer Institute.
The book is made up of photographs and small writing excerpts. It uses archival collections from Dr. John Ziegler, drawings of patient photographs from the Makerere Department of Medical Illustration from the 1960s and 1970s, slides from Dr. Paul Carbone, Andrea Stultiens’s contemporary photographs and patient portraits, and raw excerpts from my fieldnotes. This material was displayed both at the UCI and at the AfriArt Gallery in Kampala, as well as other sites in Europe as part of History in Progress’s retrospective and reappraisal of the Ugandan past.
I cannot speak for my colleagues at the Institute or for Andrea Stultiens, but I think this sort of deep, experimental, conversational, and careful work provides an alternative to burial, debris, or ruin. The Staying Alive exhibition and the events around it also opened up a space to reconsider the public performativity of images of Burkitt’s lymphoma. Burkitt was a showman—the production of visual evidence about BL was essential to creating interest in this lymphoma in the 1960s. This exhibition allowed us to rethink the power dynamics of privacy, exhibitionism, public spectacle and private suffering. It allowed us to ask what these images mean at a place like the Uganda Cancer Institute where the experience of cancer is often so socially intimate and not private at all?
Colleagues in the medical humanities may find themselves working in the space of archival preservation or contemplating how to work with a large box of photographs. And these materials will invariably raise a number of ethical dilemmas and unique opportunities similar to what I describe above. We conceived of multidisciplinarity in broad terms, in order to incorporate photographers, digital preservation specialists, oncologists, journalists, art gallery owners, and cancer survivors. Creating these public spaces for dialogue, reflection, exchange, also underscores the fact that as a historian and anthropologist from the global north I have a different perspective on these histories. Opening up these archival spaces allows for multiple memories, impressions, images, and experiences, to unfold and be shared. For more on the public reception of the exhibition, see this account of opening night and a thoughtful review of Staying Alive.
Geissler, Paul W, Guillaume Lachenal, John Manton, and Noémi Tousignant. 2016. Traces of the Future: An Archaeology of Medical Science in Africa.
Mbembe, Achille. 2002. “The Power of the Archive and Its Limits.” In Refiguring the Archive, edited by Carolyn Hamilton, Verne Harris, Jane Taylor, Michele Pickover, Graeme Reid, and Razia Saleh, 19–27. Dordrecht: Springer Netherlands. https://doi.org/10.1007/978-94-010-0570-8_2.