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Abstract
This thesis explores the quality of life of the first generation of people with spina bifida to reach adulthood. The inquiry was conducted from the social/political approach to disability. From this perspective, disability is viewed as a matter of equality because the problems associated with having a disability are caused by barriers within the social environment. This human rights-based approach underlies much current Australian legislation and government disability policy. The research question was: do adults with spina bifida in New South Wales have the same quality of life as other adults in New South Wales?
Quality of life was examined using a framework incorporating objective and subjective measures of quality of life, and the relationship between them, in thirteen domains of life. The role played by values was also explored. Qualitative and quantitative data were collected. Results from structured interviews with a stratified random sample of 117 adults with spina bifida were compared with the results of postal surveys from 180 Technical and Further Education students. 1991 Census data was also used for comparison.
People with spina bifida were found to be disadvantaged in every area of life studied, being in the lowest categories of quality of life: 'adaptation' or 'reluctant adaptation' for nearly all domains. In this situation the spina bifida group had significantly lower objective life conditions than the comparison group, yet were as satisfied or more so, with these circumstances, having adapted their expectations downwards. Qualitative results revealed that people with spina bifida suffered high levels of discrimination, social exclusion and isolation. They wanted jobs, leisure opportunities, relationships and to form their own families. Having little hope of attaining these, however, they had become resigned to their disadvantaged situations.
It is concluded that there is a large gap between current Australian disability policy rhetoric about rights and equity, and the reality for people with disabilities. It is also demonstrated that measurements of quality of life which take into account both objective and subjective indicators and the relationship between them, are vital for service planning and evaluation. Implications for future research, policy and practice conclude the thesis.