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Students with Osteogenesis Imperfecta: A Comparative Intergenerational Study of Inclusive Participation in New Zealand schools.

Osteogenesis imperfecta (OI) is a genetic condition commonly known as Brittle Bones. The purpose of this study was to listen to and document the experiences of those with OI to investigate if there were barriers to inclusive education for students with osteogenesis imperfecta (OI). Persons with OI are often small in stature, have limited strength and varying degrees of mobility. Adventurous behaviour or everyday activities may result in fractures. Often in the world of disability the focus is on the medical condition rather than the personal experiences of those with the condition. This study provided an opportunity to articulate the personal experiences of the participants. In this study two specific aspects of educational experiences were examined. The first aspect explored was the way students managed physically within the educational setting, while the second aspect examined how students coped emotionally. Five major questions were used to determine if special education policies have affected the quality of inclusiveness for students with OI in New Zealand classrooms over a period of forty years. These questions examined what barriers exist in the past and whether the same barriers still exist within today's educational setting. The questions investigated what or who may be the cause of these barriers and what possible effects these barriers might have on the student The present situation was compared with the past and finally how might these barriers be overcome was investigated. This qualitative study focused on three individuals, each representing a different generation. The participants exemplified a particular phenomenon, specifically the daily school lives in New Zealand of those with OI. The difficulties these students faced were explored through semi-structured interviews to encourage the three participants to voice their individual experiences. All three participants gave freely of their thoughts in an articulate, thoughtful and open manner, sharing both their positive and unpleasant experiences. This study revealed that some New Zealand schools have yet to implement recent inclusive education policies set out by the Ministry of Education. The three participants identified barriers to inclusive education from their own personal perspectives. The physical environment of school presented challenges. Distance between classrooms and assembly halls and accessibility to the playground, ramps and toilet facilities created difficulties for students with OI who did not walk independently. Attitudes of parents, teachers, and the wider school community impacted on the self-attitude of students with OI. Over-protection, fear and anxiety were identified as unintentional attitudes that placed limitations on participation of meaningful activities and added to student feelings of isolation and difference. Lack of knowledge of the medical and psychosocial aspects of students with OI could account for the continued barriers imposed by some teachers. Barriers do still exist in some New Zealand schools for students with osteogenesis imperfecta. Improved access could result in more participation. More participation could allow for an improved quality of social interaction and thus result in greater focus on the person and less focus on the disability. Collaboration between all school staff, parents and students with OI is essential to minimise barriers and maximise academic and social opportunities.
Type of thesis
Holmes, H. J. (2007). Students with Osteogenesis Imperfecta: A Comparative Intergenerational Study of Inclusive Participation in New Zealand schools. (Thesis, Master of Education (MEd)). The University of Waikato, Hamilton, New Zealand. Retrieved from https://hdl.handle.net/10289/2467
The University of Waikato
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