Exploring the educational experiences of children and young people with non-syndromic cleft lip and or palate in the west of Scotland

Historically, society has developed and presented the concept of ‘disability’ in negative terms. This in turn led to the identification of individuals/groups with some medical conditions as ‘different’ from the general population. However, this theory has more recently been challenged by the narrative of inclusion which has contributed to questioning the term ‘difference’ and has replaced it with ‘diversity’. Young people with cleft have previously been identified in society by their ‘difference’ due to speech and appearance issues. Existing literature, largely from medical professionals, suggested that young people with cleft underachieve. Studies to date have been mainly carried out using quantitative methods. These investigations suggested a number of areas of challenge – primarily linguistic, cognitive, self-concept and concerning the expectations of others. In contrast, this research set out to attempt to understand more deeply the reasons for the suggested underachievement using qualitative research methods to explore the social and educational lives of young people with cleft at three different stages in their development. This research found that the narrative of underachievement among the young people with cleft involved in the study did not follow the pattern expected as it emerged from the medical literature. Overall individuality characterised the learning trajectory of the young people with cleft. All young people were making progress in their learning albeit at their own speed and as appropriate, with support. The experiences of learning at clubs/associations was more inclusive than those at school where no support was required and there were different expectations of adults supporting learning in clubs and schools. Labelling was a contentious issue but in individual cases this had negative consequences which were counterbalanced by friendship circles often formed at nursery school. This study highlighted teachers’ lack of knowledge of this medical condition and its potential consequences for educational experiences in individual cases and a lack of interpersonal and inter-agency communication. This study therefore challenges the deeply integrated societal stereotypes of young people with cleft. It highlights the importance of listening to children’s voices and offers suggestions to both educational and medical professionals for improving the experiences of the young people concerned