Digital Activism in Kenya
Moving from the digital center to the digital periphery of Long Covid experience
I was struck by the digital activism of Long Covid patient activists since they surged in their collective pursuit of knowledge, recognition, and innovation in 2020. The story here was novel not only because of who they were but also because of what they were doing. I describe the story of who drove patient activism in the United States in my open access article “Long Covid and the Rise of Digital Patient Activism”. I wrote:
“It was the first time a patient activist had taken control of naming a new health condition through wide-reaching and effective digital activism. This type of activism became a defining feature of the Long COVID experience, providing online portals where members of an emerging movement could organize and share information. Building on the history of previous health movements and drawing on the knowledge of longtime patient activists, the Long COVID movement has cultivated a community and forged a unique solidarity that has fundamentally shifted how this health condition is perceived among patients and the public alike. Even so, challenges remain with gaining understanding and recognition of the condition, effective treatment, and insurance coverage of non-medical treatments that do work.”
While writing this work, conducting 150 interviews, and working on my book Invisible Illness, I was also in close contact with dear friends and colleagues. Dr. Edna Bosire was at one time a mentee who has become my close collaborator and friend. Located in Nairobi, Kenya, we have conducted several projects together. For instance, when I was doing research for and then writing by book, Unmasked, Edna decided to conduct a comparative project in her hometown of Eldoret, Kenya, which you can see here and here. For this work, we worked with the wonderful Lucy Kamau. When I shared my research findings from the US on Long Covid, Edna suggested we conduct a similar project in Nairobi, and Lucy again became a crucial research collaborator on this project.
We also reached out to Dr. Nora Kenworthy, a longtime collaborator and friend who has written extensively on health politics. Nora’s recent wonderful book, Crowded Out, disentangles the complexities of for-profit healthcare that leaves people to make sense of their medical bills through crowd-funding. Nora recently started thinking more about digital spaces for Long Covid dialogues, which dovetailed nicely with this work.
Our collective think brings together my research on Long Covid on the US with Edna and Lucy’s research in Kenya, with Nora’s broader thinking about digital communities globally. We found that these global digital communities are truly powerful but don’t look the same everywhere. This research was published in Globalization and Health, entitled: “Digital Activism in Kenya: Moving from the digital center to the digital periphery of Long Covid experience”. Take a look at this work if you’re interested in the global ways in which ideas and information about health and healing have penetrated social medial and digital communities.
In this article, “we tell a story about digital activism in Kenya, starting with international conversations that became extremely localized. We use the case study of digital experiences of people in Kenya, a context where people have sophisticated digital lives but are reliant on hierarchical and exclusionary global information networks, to describe Long Covid online networks’ connections, hierarchies, and barriers. In this way, for more digitally peripheral Kenyans, the concepts and constructs of Long Covid remained somewhat out of reach, or out of touch, with their perceptions of, and experiences with, lingering post-viral symptoms following COVID- 19. We argue that most Kenyans may be engaging with digital networks from different places of geographic, cultural, linguistic, and technological power, possibly cultivating divergent idioms, interpretations, and experiences of the post-viral condition. This case study, then, exemplifies not only social networks at the digital periphery but also the complexities situated within the periphery itself, which is at important social nodes, connected to the digital center.”
ABSTRACT
Digital activism around Long Covid has reverberated around the globe, as patients, researchers, and clinicians worked together to understand the chronic condition. However, Long Covid networks, much like other social networks, have hierarchies and barriers that can impede equitable access. In this article, we examine how the global digital center and periphery shape how people with Long Covid connect to networks to learn about their illness symptoms, diagnoses, treatments, and experiences. We introduce case narratives of two Kenyan women—one elite Nairobian who was connected to the digital center and another middle class woman who connected with her through a peripheral digital community—to describe how elite patients were engaged at the digital center, and non-elite patients were engaged in the periphery with digital and non-digital connections through which they cultivated other social networks to communicate, share, and experience their illness experiences. The Kenyan case study introduces a context where people have sophisticated digital lives and are engaged in global information networks. Yet, we argue that some Long Covid patients’ experiences are impossible to divorce from the digital activism that has drawn together a remarkable global patient community, causing a ripple effect on how people define and experience the self and illness throughout the world. We conclude that many Kenyans may be engaging with digital networks differently and from different places of geographic, cultural, linguistic, and technological power, possibly cultivating divergent idioms, interpretations, and experiences of the post-viral condition. This demonstrates not only how social networks function at the digital periphery but also the complexities situated within the periphery itself, which is at important social nodes, connected to the digital center.