Den svære balancegang mellem hypervisibilitet og usynliggørelse i livet med epilepsi: Hvordan kan kreative metoder belyse de særlige udfordringer for unge med epilepsi?
Authors: Hougaard Naja Berg , Rosenberg Charlotte 
Published: September 2022

Artiklen undersøger, hvordan kreative metoder kan bidrage til at belyse, hvordan unge med epilepsi navigerer i deres hverdagsliv og praktiserer agens. Vi har et særligt fokus på, hvordan kreative metoder kan bidrage til at igangsætte forandringsprocesser for unge med epilepsi. Artiklen er baseret på et forskningsprojekt med 12 unge med epilepsi (17–25 år) samt 13 af deres betydningsfuldeandre (fx forældre, kærester etc.). Inspireret af kritiske og transformative kvalitative perspektiver (Vianna & Stetsenko, 2014; Stetsenko, 2020) undersøger vi, hvordan forandringsfokuseret hverdagslivsforskning bidrager til at skabe praksisforandringer. De kreative elementer i projektet består af inddragelse af en tegneaktivitet i interviewformatet (Bagnoli, 2009), dagbogsbilleder fra de unge projektdeltagere (Restler & Luttrell, 2018; Rasmussen, 2017), poetiske repræsentationer (Hølge-Hazelton, 2002; Krøjer, 2002; Rosenberg, 2013; Wulf-Andersen, 2011) samt afholdelse af en læringscirkel (Kildedal, 2014). Artiklen belyser, hvordan kreative metoder kan belyse de unges komplekse hverdagsliv. En af de centrale udfordringer, som de kreative metoder er med til at pege på, er, hvordan unge med epilepsi er udfordret af en svær balancegang mellem på den ene side at opleve at blive set udelukkende for deres epilepsi (hypervisibilitet), særligt i sundhedssystemet, og på den anden side slet ikke at blive set i forhold til de udfordringer, der knytter sig til epilepsien (usynliggørelse), i fx uddannelsessystemet.
English abstract
The difficult balancing act between hypervisibility and invisibility: how can creative methods illuminate the specific challenges for youth with epilepsy?This article explores how creative methods may help shed light on how young people with epilepsy navigate their everyday life and practice agency. We have a particular focus on how creative methods can contribute to instigating processes of change for young people with epilepsy. The article is based on a research project involving 12 young people with epilepsy (age 17–25) and 13 of their significant others (e.g. parents, partners, etc.). Inspired by critical and transformative perspectives (Vianna & Stetsenko, 2014; Stetsenko, 2020), we explore how change-focused research in the context of everyday life contributes to making changes in practice. We first explain how we understand epilepsy through the lens of a critical and dynamic concept of functional diversity. The creative methods used in the project include the use of a drawing activity during the interview (Bagnoli, 2009), diary photos from the young participants (Restler & Luttrell, 2018; Rasmussen, 2017), poetic representations (Hølge-Hazelton, 2002; Krøjer, 2002; Rosenberg, 2013; Wulf-Andersen, 2011) and a learning circle (Kildedal, 2014). The article explore on how creative methods may help shed light on the complex everyday lives that the young people lead. One of the central challenges illustrated by the creative methods is that young people with epilepsy navigate between, on the one hand, experiencing being seen only for their epilepsy (hypervisibility), especially in the healthcare system, and on the other hand not being seen in connection with the particular challenges associated with epilepsy (invisibility), e.g., in the educational system.