"Out of the Shadows": The Transformation of Epilepsy Stigma in Mahenge, Tanzania, 19th–20th Century

Abstract

The 1997 "Out of the Shadows" campaign, led by the International League Against Epilepsy (ILAE), the International Bureau for Epilepsy (IBE), and the World Health Organisation (WHO), sought to improve the well-being of people with epilepsy worldwide by combating stigma. However, the campaign treated stigma as a uniform problem, ignoring the local social and historical contexts in which stigma emerged and operated. Drawing on oral life histories, illness narratives, and in-depth interviews with 23 informants from four villages in Mahenge, this paper examines the root causes of stigma as well as the transformation of stigma brought by increasing inter-community interactions and the growing pressures of the money economy during the colonial period. The study found that in the pre-colonial period, both men and women with epilepsy faced stigma as the Wapogoro believed both sexes could transmit the condition through reproduction. During the early colonial period, however, many men migrated to distant villages, married, and fathered unaffected children, revealing that paternal transmission was rare. At the same time, the colonial money economy placed new pressures on men to earn cash wages. Consequently, the root cause of stigma for men shifted from reproduction to a poor economic base. Women, by contrast, continued to experience stigma based on the belief that women transmit epilepsy to their children and that seizures incapacitate them from performing daily gender roles. These findings demonstrate that the 'Out of the Shadows' campaign's assumption of uniform stigma is contextually incomplete. Effective intervention against stigma requires building on local knowledge relating to epilepsy accumulated over centuries.