When early testing indicates a hearing loss, parents find themselves on a rollercoaster 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.
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.
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.
New-born screening programs for congenital disorders and chronic disease are expanding worldwide and children "at risk" are identified by nationwide tracking systems at the earliest possible stage. These practices are never neutral and raise important social and ethical questions. An emergent concern is that a reflexive professionalism should interrogate the ever earlier interference in children's lives. The Flemish community of Belgium was among the first to generalize the screening for hearing loss in young children and is an interesting case to study the public justification of early interventions for families with deaf children. This article uses a critical lens to study the archive of the government child healthcare organization in Flanders in order to uncover underlying constructions of childhood, deafness, and preventive health. We focus on two interrelated themes. The first is the notion of exclusion of the human factor through the mediation of technology. The second is the idea of deafness as endangering a healthy development, an impairment that can nevertheless be treated if detected early enough. It is argued that, since deafness cannot be viewed as a life-threatening condition, the public interest which is implicitly defended is not the rescue of deaf children rather the exclusion of otherness.
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