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Has stigma changed? The image of epilepsy in literature. An essay

  • Peter Wolf
    Correspondence
    Address: Dag Hammarskjölds Allé 5, 1.tv, DK – 2100 Copenhagen, Denmark.
    Affiliations
    Danish Epilepsy Centre Filadelfia, Dianalund, Denmark

    Postgraduation Programme in Clinical Medicine, Federal University of Santa Catarina, Florianópolis, SC, Brazil

    Vilnius University, Faculty of Medicine, Institute of Clinical Medicine, Clinic of Neurology and Neurosurgery, Lithuania
    Search for articles by this author
Published:October 22, 2022DOI:https://doi.org/10.1016/j.yebeh.2022.108921

      Highlights

      • Stigma is one of the severest burdens for persons with epilepsy.
      • Literature provides insights into societal attitudes.
      • Traditionally, epilepsy often appears in literature in stigmatizing ways.
      • Newer literature increasingly presents positive characters with epilepsy.
      • First-person narrators, electricity metaphors, and attractive smells are vehicles of destigmatizing fiction.

      Abstract

      Stigma is perhaps the most important sociopsychological burden for people with epilepsy (PWE), and literature both reflects and influences societal attitudes including stigma. To study how representations of stigma have changed over time could provide interesting insights. Traditionally, often repeated stigmatizing aspects include possession, insanity and crime, the weak, dependent and miserable epileptic, unfitness for marriage and reproduction, unreliability, but also special gifts. Many works present characters with epilepsy as inferior, outsiders, or misers.
      Recently, however, changes became apparent. First, several books addressed and criticized stigmatization of PWE. This was followed by works with positive characters, even role models, both women and men. They are independent, competent, sexually active, and attractive. Some indulge in sports, arts, or advanced technologies. Several are based on first-hand knowledge of people with epilepsy, and some belong to the field of autofiction. Optimistic literary categories like romance or coming-of-age are increasingly met, often with a first-person narrator.
      Whereas traditional epilepsy metaphors often indicate vulnerability, emotional instability, and weirdness, newer literature increasingly uses electricity metaphors.
      These represent power, excitement, and modernity. Another frequent new destigmatizing feature are olfactory auras that create a positive atmosphere.
      Along with comparable destigmatizing features in present popular music, recent developments in literature may represent a parallel to an emerging change in public opinions on epilepsy to which they could contribute an emotional dimension.

      Keywords

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