”Det er godt sådan i det hele taget at kunne sige, hvad man vil og ikke vil” – Børn med funktionshæmning og deres refleksioner omkring deltagelse og indflydelse på eget liv

Abstract

When it comes to children with disabilities and their reflections on participation and influence intheir everyday lives, there is very little research. The study has a phenomenological-hermeneuticapproach and participatory methods over time. Together with three children aged 9–12 the studyexplores their experiences of participation and influence in their everyday lives based on article12 in the UN Convention on the Rights of the Child. The children’s reflections are connected to therecognition theory of Axel Honneth. The children believe that it is important to be able to expresstheir own opinion and to have influence and that the main preconditions are a sense of feelingsecure and believing in oneself. At the same time, they are well aware of possible factors, whichcan affect their participation and influence, such as their own disability or the surroundings, towhich they relate. The study finally discusses how the relational approach to disability may relateto the children’s experience of recognition and ensuring their right to have a say.

Recognition and Capability – Prerequisites for Empowerment for Children with Disabilities?

“…When looking at research studies concerning children with disabilities and their views and experiences with participation and influence, the children most often express that they don't have a say or only are involved in small decisions (Andersen & Dolva, 2015;Stafford et al, 2003;Young et al, 2006). However, some studies have identified that the children accept and/or understand why it is so and adapt to it (Andersen et al, 2019;Coyne & Gallagher, 2011;Stafford et al, 2003). Meanwhile, studies show that children with disabilities state that it is important to be able to express one's opinions (Andersen et al, 2019;Cavet & Sloper, 2004;Mårtenson & Fägerskiöld, 2008;Stafford et al, 2003).…”

“…However, some studies have identified that the children accept and/or understand why it is so and adapt to it (Andersen et al, 2019;Coyne & Gallagher, 2011;Stafford et al, 2003). Meanwhile, studies show that children with disabilities state that it is important to be able to express one's opinions (Andersen et al, 2019;Cavet & Sloper, 2004;Mårtenson & Fägerskiöld, 2008;Stafford et al, 2003). However, some children with disabilities believe that it is more important to be recognized rather than being the one in charge of decisions (Andersen et al, 2019;Coyne & Gallagher, 2011;Stafford et al, 2003).…”

“…Meanwhile, studies show that children with disabilities state that it is important to be able to express one's opinions (Andersen et al, 2019;Cavet & Sloper, 2004;Mårtenson & Fägerskiöld, 2008;Stafford et al, 2003). However, some children with disabilities believe that it is more important to be recognized rather than being the one in charge of decisions (Andersen et al, 2019;Coyne & Gallagher, 2011;Stafford et al, 2003). The children understand that they need surgery, physiotherapy etc.…”

“…The balance here is difficult, since the children, at the same time, see themselves foremost as children and not as disabled. Other factors may be that some children have experienced a lack of understanding and of being excluded from their surroundings along with physical limitations in their environment creating barriers for participation, speaking one's mind and having influence (Andersen et al, 2019). Retrospective studies and literature support these statements, showing that adolescents with disabilities wish that they had had more opportunities to feel part of a peer community and perhaps not spend as much time on treatment (Grue, 2019;Smith & Traustadóttir, 2015).…”

“…This view is therefore still greatly influenced by the medical model of disability where the focus is on trying to "repair" the impairment, rather than acknowledging the complex interaction between child and surroundings, as well as recognizing and appreciating the child first. This is the case despite the fact that several studies show that children with disabilities see themselves foremost as children (Andersen et al, 2019;Gustavsson & Nyberg, 2015;Smith & Traustadóttir, 2015). In this way, children with disabilities may therefore be in a different framework than children in general and theory concerning this may need further exploration and alterations.…”