Inclusive Education (PDF)

conditions.

So, in this chapter, we explore the views of a male and a female adolescent who have to live with a potentially disabling, terminal condition. We examine the impact of the illness on them, with particular reference to feelings of alienation and isolation resulting from the illness and from absences from school as a result of repeated, significant periods of hospitalization. Our task in this chapter is to allow the students’ voices to tell of their concern about having a specific chronic illness in terms of their growth, development, interaction with peers, and progress and life at school.

A Personal Profile

Part of our justification for selecting and categorizing our participants on the basis of a medical condition can best be seen in the work the authors do. We both work for the largest and most respected paediatric hospital in Australia.

Jeff Bailey: I am a Professor of Special Education and currently hold a joint appointment with the University of Western Sydney, Nepean and the Royal Alexandra Hospital for Children. At the Hospital, I am the Inaugural Director of a new research centre established in 1996—the Children’s Hospital Education Research Institute (CHERI). I have an extensive background in education and particularly in working with children and adolescents with disabilities and learning difficulties. An educator and psychologist by training, I have been a teacher, school principal, special education consultant and academic. My doctoral training was in a university affiliated research centre, the Cincinnati Center for Developmental Disorders. Attached to the Children’s Hospital and the University of Cincinnati, this experience gave me insight into the importance of taking a comprehensive, transdisciplinary view of children’s problems and developments. Recognizing the need to treat children as children, I realize, nevertheless, that to provide the most effective services to children with disabling conditions, it is essential to embrace a wide range of perspectives and disciplines.

Belinda Barton: As Coordinator and Research Associate I was the second appointment to CHERI. I am a psychologist in training, with an honours degree in psychology. My previous research undertaken at other hospitals has been in the areas of depression and anorexic individuals. I have also spent some time working in a refuge, counselling female adolescents who, as a result of past unfortunate experiences, have a number of emotional and behavioural difficulties.

CHERI: The mission of our research institute is to conduct studies into medical, psychological and developmental problems associated with children’s health, especially in relation to the interface between health and education. For this reason, and as CHERI has a particular advocacy role for children with disabling conditions not typically dealt with in ‘special education’, the selection of cystic fibrosis as a representative illness for consideration as an inclusion challenge, is logical and important.