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

Abstract

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.<br />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 /

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

“…Fundamentally, these experiences are about children at risk of discrimination and prejudice in society and about the various fields in which parents are enabled or disabled to care and act on behalf of their disabled children (Ferguson 2001;McKeever and Miller 2004). In the light of recent studies pointing to the ways in which parental perspectives contribute to the social fund of knowledge (for example, Rapp and Ginsburg 2001), parents can no longer be viewed merely as passive recipients of care and in need of social support (Van Hove et al 2009). Dynamic social constructs within experiences of transition to parenthood in cases of young children identified with a label are increasingly studied (for example, Goodley and Tregaskis 2006;Goodley 2007;Clavering, Goodley, and McLaughlin 2006).…”

“…However, few authors critically examine parents' stories. Here we use them as a lens with which to uncover the meanings of parenting of a child identified with a label (Isarin 2001;Read 2000;Van Hove et al 2009). 'It provides the opportunity to examine spaces of social interaction that are both intimate and public in which impairment is produced and made meaningful' (Kelly 2005, 184).…”

School counsellors’ beliefs regarding collaboration with parents of students with special educational needs in Flanders: Parents as partners or opposites?

“…As a consequence, parents of SEN students in general, and ethnic minority and low SES parents of SEN students in particular, often experience a lack of control over their child's school career, can hold negative feelings about the school and avoid contact with school professionals (Lamb, ; Tucker, ). At the same time, school counsellors have reported their frustration with these parents because they do not follow their recommendations and sometimes label them as ‘annoying’ (Van Hove et al ., ). In previous research in Flanders with ethnic minority and low SES parents of SEN students, these parents did not feel they had been treated differently compared with parents of majority groups and were satisfied with the school‐internal and school‐external student guidance.…”

“Tell Me About Your Child, The Relationship with Your Child and Your Parental Experiences”: A Qualitative Study of Spontaneous Speech Samples Among Parents Raising a Child with and without Autism Spectrum Disorder, Cerebral Palsy or Down Syndrome

“…It is also interesting to notice that although parents of children with a NDD described more empowering experiences than parents from the reference group, these experiences might be particularly motivated by confrontations with societal boundaries or deficit discourses (e.g., exclusion, injustice, stigma, accessibility, ethics of prenatal screening), instead of being volitionally motivated. Within these confrontations, parents take on a "battler role", fighting for equal rights regarding diversity and support (Altiere & von Kluge, 2009;Van Hove et al, 2009). "Being a Parent": a Transformative Process Parents' perspectives highlighted that parents grow and evolve in their position as a parent.…”