Epistemisk urettferdighet og motstand i livet til familier med barn med nedsatt funksjonsevne
Rosemarie van den Breemer
Abstract
In this article I explore epistemic injustice and resistance in structural care relationships between healthcare professionals and families with children with disabilities. I address some of the specific epistemic challenges that these families can face and elaborate on them in light of Fricker’s (2007) framework of epistemic injustice. I argue that families of children with disabilities are doubly vulnerable to testimonial injustice. Negative prejudices like being a ‘lost cause’ or ‘lacking agency’ towards the child can lower his/her status as a knower. However, this can also affect the parent’s epistemic status. Parents are at risk of not being believed by healthcare providers because they are associated with the marked child and prejudged as, for example, ‘overemotive’ or ‘in denial’. Drawing on Foucault’s notion of counter-conduct, I also show how speakers (families) are not necessarily entirely powerless. Even in cases in which they are not believed, they can deploy important strategies of resistance. This focus on counter-conduct can complement Fricker’s framework and make the debate on epistemic injustice more sensitive to the theme of speaker resistance. Furthermore, describing acts of counter-conduct might convince parents that their resistance matters, even if it is not always immediately successful.