Epilepsy is one of the most common neurological diseases in Sweden. It is a chronic condition of the brain that causes a permanent tendency to epileptic seizures. The diagnosis requires at least one and often several seizures, but the illness trajectory may or may not contain recurrent epileptic seizures (Zelano 2021). Approximately 80,000 people live with epilepsy in Sweden (70,000 adults and 10,000 children), and every year, 4,000 adults and 1,500 children are diagnosed with the disease (Specialpedagogiska skolmyndigheten 2022; Socialstyrelsen 2019). On a global level, at least 50 million people live with epilepsy (WHO 2020). 

People with epilepsy experience social exclusion and are stigmatised (Henning et al. 2021; Baulac et al. 2015; Bautista et al. 2014; Kerr 2012). International research has shown that stigma and discrimination is experienced as the most, or one of the most, difficult aspects of having epilepsy (Jacoby et al 2005; Fisher et al. 2000). Research on Sweden has shown that unemployment is higher and wages lower for working-aged people with epilepsy than for the general population. This is true regardless of educational level and whether the epilepsy diagnosis was made before or after completing studies (Andersson et al. 2020). Svenska Epilepsiförbundet (The Swedish Epilepsy Association) was started in 1954. Since the start, one of the main tasks for the patient organisation has been to counter stigma, and to work for decent living conditions, education and paid work for its members and other persons with epilepsy. 

The 1950s is described in research as the decade of the medical breakthrough. Regarding epilepsy, it was then that the chemical transmission of signals in the brain became accepted knowledge. During this period, more drugs to make people seizure-free were developed, which meant that the medical community's understanding and knowledge of epilepsy increased. At the same time, society's understanding of people with epilepsy remained limited (Ringarp, 2019). Despite changes in the 1950s, not least through the formation of patient organisations, the view of the so-called deviant or feeble-minded person with epilepsy persisted for a long time. Over time, there was a change in the perception of the ´feeble-minded´ and ´epileptics´. One such example is the change of name ´feebleminded’ to ‘mentally retarded’ in the 1954 law (SFS 1954:483). In the late 1960s, two important changes took place. 1967 saw the establishment of the right to education for children with mental retardation. To provide education for these children, special schools were developed that could include primary education as well as training and vocational schools (SFS 1967:940; SOU 2004:118). In 1969, the marriage ban for people with epilepsy was abolished and, at around the same time, it was decided that epilepsy institutions would be phased out (Lennerhed & Ringarp, 2019). Instead of living in institutions, patients would move out to their own homes, outpatient care or nursing homes in their own region. Those in need of continued support would be transferred to nursing homes for the mentally retarded, while those who were not considered mentally retarded would be transferred from other epilepsy centres to Stora Sköndal and Erstagården for a transitional period, to be cared for regionally over time (Lennerhed 2022).

Drawing on extensive source material, our paper analyses the outreach activities to reduce stigma undertaken by the patient organisation the Swedish Epilepsy Association around 1950-1990. The paper discusses to what extent the Swedish Epilepsy Association can be understood as a trading zone that took part in determining the direction taken by Swedish epilepsy research in a time and place characterised by a changing welfare state (Galison 1999; 2010). We also discuss how we can understand the knowledge production on access to education for people with epilepsy in Sweden. We believe this is important not least because research shows that still today stigma and discrimination is experienced as the most, or one of the most, difficult aspects of having epilepsy (Jacoby et al 2005; Fisher et al. 2000). Epilepsy-related stigma contributes to psychological distress, reduced self-esteem and self-efficacy, and decreased quality of life (Herrmann et al. 2016; Newton et al. 2012; Jacoby 2002). For this reason, a study of patient organisation outreach and societal change is also of great importance for current epilepsy research. Question that will be discussed are: How did the Association organise its work to draw attention to the stigma experienced by people with epilepsy? Did they co-operate with other associations? Who was active in the organisation?