Dr. Ziegler’s collection slide collection concerning the Uganda Cancer Institute includes pictures that seem to be out of place. On first sight it looks as though they were made by tourists visiting Uganda for its national parks rather than by medical staff working with a groundbreaking research institute.
In this post Marissa Mika shares an excerpt from the book she is currently writing about the history of the Uganda Cancer Institute. Her words form a stark contrast with the richness of Uganda’s natural beauty. But these realities existed, and in slightly other versions still exist, alongside each other even though they may not often be framed together and therefore seem to be part of different worlds.
… we know better…
All the photographs with black frames in this blog post are scans of slides made around 1970.
In June 1971, approximately six months after Idi Amin’s January coup, the Uganda Cancer Institute’s assistant administrator Tom Tomusange went on a “patient safari” to follow up on patients who had failed to keep their appointments at the Institute. Driving a Volkswagen Beetle, Tom went eastwards, past the banana gardens, sugar cane fields, and tea bushes. He drove through Jinja, over the Owens Falls dam road that harnesses the power of the Nile River for electricity, and into the flatter lands of eastern Uganda, where papyrus and swamps dominate the landscape until the road curves northwards into the green hills of Tororo and Mbale town, at the foot of Mount Elgon—coffee cultivation country. Upon arriving in the east, “the car was producing queer noise from the engine, and so I took it to Mbale Prudential Garage who cleared the carbulator [sic],” Tom wrote in his visit report. After solving his vehicle problems, Tom spent the next twelve days visiting village homesteads, mainly to meet with the families of young children with Burkitt’s lymphoma, who either needed to come back to the Institute or who were in danger of being “lost to follow up.” He also hoped to track down the reasons for the deaths of several patients who had not survived their cancer treatments at the Institute.
In the late 1960s, when Aloysius Kisuule and Dick Morrow first piloted patient outreach and follow up methods to study Burkitt’s lymphoma epidemiology and treatment outcomes, Kisuule noted that a lot of village outreach was about “making friendship”. If parents could not trust Kisuule or feel at ease with him, they would be inclined to hide the child, or simply refuse to go to Kampala. Persuading a father to allow mother and child to travel to Kampala for experimental care could take days of negotiating with families and village chiefs.
After Amin’s coup in 1971, the work of “making friendship” entailed not only the social savvy of fieldworkers to negotiate with reluctant families who feared blood taking, hair loss, or not fitting into the everyday habitus of Kampala city life. Fears of the cancer ward commingled with rumors of violence occurring along geographical and ethnic identity lines. Eager to separate themselves from mounting political chaos, many villagers and families associated with long term care at the Lymphoma Treatment Center retreated to the daily work of cultivation on their quiet shambas. And yet, patients and their caretakers still made pilgrimages to Kampala for serum draws, clinical exams, and follow up photographs up until the NCI stopped funding patient cohort outreach between 1977 and 1978.
Patient follow up relied on politically savvy fieldworkers like Tom Tomusange. We see that Tom’s patient outreach work took on the quality of convincing the families of patients that not only is the medical care meant to “help” and ensure that patients get well and stay well, but that Kampala was still safe and navigable, even for Ugandans living in Lango and Acholi areas in northern Uganda. Tom’s labor involved ongoing maintenance—of vehicles, of social relationships with patients and their families, and of reliable maps of where patients lived, which were carefully marked on patient follow up reports. These ongoing maintenance efforts ultimately determined whether or not these patients would be included as data points in cancer survival charts, and in some cases, whether or not they would return to Kampala for another round of chemotherapy. Being a medical man also granted Tom greater mobility. Soldiers at roadblocks were willing to let Tom through without a scratch largely because he was able to produce papers that showed evidence of him working at the Uganda Cancer Institute. “If you told them that you were doing medical work,” Tom recalls, “the soldiers would let you move more freely throughout the country.”
We are still working towards the exhibition ‘Staying Alive – Documenting the Uganda Cancer Institute‘, that coincides with the 50th anniversary of the institute. Be welcome at the opening of the show on August 18th, or during the following week during the opening hours of Afriart Gallery off Kira Road in Kamwokya.
An additional note from Marissa:
I had the absolute joy of driving around with Tom in 2012 on a different kind of safari. We were following up with his friends and colleague who had worked at the UCI in the 1960s, 1970s, and 1980s. I just heard that Tom passed away last month. I am sorry that he will not be joining us at the opening in person. His work and his courage live on.