In today's climate of consumer consultation in the development of client sensitive hospital and community based services, some voices have remained silent. Among this group are disabled children and young people, who receive professional care in a climate of 'in their best interest', firmly based on notions of abnormality and the inherent tragedy of disability. New paradigm childhood research and the social model of disability provide the theoretical framework for this qualitative study into the health and health care experiences of disabled children and young people. Both approaches demand a flexible and participatory approach in order to challenge the traditional relations of research production. Twenty young people aged 9-18 years met with the researcher up to four times, with a choice after the initial meeting of individual or group meetings. All had a physical disability, some also had communication or learning difficulties. Conversations with the young people covered a range of topics. The obvious ones related to hospitals, appointments, splints and therapy. About what it is like having a carer. Commonly held assumptions that hospitalisation is a significant feature of disabled childhoods is challenged by the data, appointments however reflect an ongoing surveillance. The young people spoke of experiences of empowerment and of powerlessness within a triad of parent:professional:young person. Concern that many treatments are an experiment and that outcomes are hard to balance with the pain and inconvenience of surgery or therapeutic devices raises questions regarding professional versus young person's definitions of success. It also demands debate regarding how much remedial intervention is enough. This is a difficult issue in a medical and social climate that idealises normality, but normality is not often an option. Health care constitutes only a narrow perspective of health and made up only a part of the discussion. It is the day to day health experiences that are more prominent in the lives of participants than intermittent professional services. The young people showed a recognition of factors that contributed to their health and sense of well being. Commonly the talk was about living in a world that considers them as different and the effect that has on them. These young people are making links between racism and their own disability experience, however they have no contact with disabled adults, some with no other disabled young people and no understanding of disability history or politics. This lack became even more evident when the participants talked about who understands what their life is like, of role models, realistic aspirations and dreams for quiet moments. School issues raised concerns such as equity in access, being different, having to prove oneself, limited school sport involvement and issues of friendship and teasing. One very powerful finding is that just like anyone else they are all different but that stereotypes of disability limit the lives of disabled young people and influence the responses of other people to them. This demanded from the researcher an interaction with the different experiences and responses to experiences of participants or risk creating another, albeit different stereotype. / thesis (PhD)--University of South Australia, 2001.
| Identifer | oai:union.ndltd.org:ADTP/173433 |
| Date | January 2001 |
| Creators | Bricher, Gillian |
| Source Sets | Australiasian Digital Theses Program |
| Language | English |
| Detected Language | English |
| Rights | © 2001 Gillian Bricher |
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