Mensen met een handicap: over medicalisering en sociologisering

Binnen de academische wereld heerst heel wat controverse ten aanzien van het domein van ‘disability studies’. Globaal kunnen twee benaderingen van disability worden onderscheiden: individuele en sociale modellen. Individuele modellen situeren de oorzaak voor het verklaren van een handicap binnen het individu; het medisch model vormt hier een sprekend voorbeeld van. Activisten van binnen en buiten de academische wereld hebben veel kritiek geuit op liggende sociale verklaringsmechanismen voor SEGV. In deze bijdrage wordt het concept van fundamentele sociale oorzaken van ziekte, geïntroduceerd door Link en Phelan (1995), van een sterkere sociaaltheoretische basis voorzien. Een belangrijk aandachtspunt is de positie van deze fundamentele oorzaken binnen het “structure en agency-probleem” van de sociologie. Vervolgens worden de fundamentele oorzaken preciezer omschreven als “relationele sociale systemen van middelenallocatie”. Centraal staat het betoog dat een zorgvuldige conceptualisering van de fundamentele sociale oorzaken noodzakelijk is om ze te kunnen identificeren. Dit wordt aangetoond aan de hand van twee voorbeelden

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status: publishe

Saving deaf children? Screening for hearing loss as a public interest-case

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The roller-coaster of experiences: becoming the parent of a deaf child

When early testing indicates a hearing loss, parents find themselves on a roller-coaster of experiences leaving little time or space for reflection. This study is based on interviews with families in the Flemish region of Belgium, one of the earliest in the world to introduce universal neonatal screening for hearing loss. Starting from a phenomenological approach, we explore parents' accounts of their experiences in order to uncover the meanings of early parenting of a child identified with a label. Soon after birth, these parents encounter a different world in which intertwined discourses construct parenthood with a deaf child. During the process of becoming a parent, representations of deafness as impairment were omnipresent. In contrast to a medical and technological perspective that insists on the need to intervene as fast as possible, it is argued that the private and social implications of rapid intervention require explicit consideration

Working with mothers and fathers of children with disabilities: metaphors used by parents in a continuing dialogue

Within this article we will introduce some metaphors as they were developed and used by mothers and fathers we worked with: the traveller, the warrior, the builder of bridges, the discoverer, the trainer/teacher, the in-between-er, the manager... We will position these metaphors as tools parents are using in their confrontation with normalising discourses of disability and education. In this sense mothers and fathers of disabled children can be seen as 'parents on the margins' from whom we can learn a lot about parenting in general. In that sense the metaphors we will present can be situated as a meta level parents present in their continuing process of reflection on their living together with their children with disabilities.Nous presenterons, dans le cadre de cet article, quelques-unes des metaphores developpees et utilisees par les peres et meres avec lesquels nous avons travaille: le voyageur, le guerrier, le batisseur de ponts, l'explorateur, l'entraineur/le professeur, l'intermediaire, le manager... Nous considererons ces metaphores comme des outils que les parents utilisent dans leur confrontation avec les discours normalisateurs sur le handicap et l'education. En ce sens, les peres et meres d'enfants handicapes peuvent etre vus comme des 'parents a la marge' aupres desquels nous avons beaucoup a apprendre en termes d'education des enfants en general. Les metaphores que nous presenterons peuvent, en ce sens, etre situees comme un meta-niveau que les parents presentent dans leur processus permanent de reflexion sur la vie commune avec leurs enfants handicapes.<br /

Pediatric cochlear implantation: a qualitative study of the parental decision-making process in Flanders, Belgium

Factors contributing to parents' decision when they choose between cochlear implantation (CI) and traditional hearing aids for their child were examined. The subjects were children with severe/profound hearing loss, born 1999-2001, registered in the universal neonatal hearing screening program in the Flanders region of Belgium. Qualitative data collected retrospectively from parents were subjected to thematic content analysis. In their responses to professional advice, parents were segmented into 3 groups: (a) those whose primary considerations were the importance of oral language development and the relative potential of CI and traditional hearing aids; (b) those for whom alternative factors (e.g., medical risks, ethical issues) were paramount, even in the face of professional advocacy of CI; (c) those who followed professional advice against CI. The researchers conclude that care professionals should be sensitive to the impact of their advice and other factors in parental decision making