Czy da się wyleczyć zespół Downa? Odnajdywanie sprawczości w systemie biomedycznym przez rodziców osób z zespołem Downa
Journal Title: Zeszyty Etnologii Wrocławskiej - Year 2016, Vol 25, Issue 2
Abstract
Can you treat Down syndrome? Gaining agency by parents of children with Down syndrome This article aims at discussing experiences and agency of parents whose child was diagnosed with Down syndrome. It is based on a two-year fi eldwork research in large cities in Poland that included in-depth interviews with families and discourse analysis of Internet sources. Down syndrome is one of the most common genetic disorders, caused by the presence of a third copy of chromosome 21. Due to the genetic nature of the disorder, there is no known cure for DS. The access to different kinds of information (mostly on the Internet) gives parents an overview of possible “treatments” for DS. In this article, I examine choices made by parents, especially mothers who consider Down syndrome not a genetic, but rather a metabolic disorder which could be “treated” to a certain degree. Parents decided to medicate their children themselves and looked for physicians who would prescribe drugs and conduct a therapy suggested by them. Treatments varied from application of cerebrolysin (drug for dementia), to vitamin supplements and diets. Although the treatment decisions made by this group of parents are not the mainstream, there is a growing trend of medication of children with Down syndrome in Poland. I argue that treating a child using unpopular methods allows parents to regain agency, fi nd autonomy within the biomedical system, and re-define the roles of expert and patient.
Authors and Affiliations
Anna Chowaniec-Rylke
Keywords
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- EP ID EP180957
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