The Living History Project: Tracking the Changes in the Lives of People with Disability 1981 -2002

Quibell R¹*, Wilson E¹

1. Scope Victoria, Nunawading, Victoria, Australia

The International Year of Disabled Persons (IYDP) was held in 1981. Its aims emphasised full participation in society and equality for people with disability. The 21st anniversary of IYDP in 2002 raised questions about what change had been achieved in this period. Despite significant societal changes in this period, including deinstitutionalisation, community living, integration, and anti discrimination legislation, little data has been available to understand the direct experience of those living with disability. This research mapped the lived experiences of 22 people with disability and 17 parents of people with disability in Victoria during the period 1981-2002. The research focuses on the positive, negative and lack of changes experienced in the lives of people with disability as identified by them and their parents. A range of enduring themes also become apparent. These include continuing social and economic marginalisation, uncertainty and fear about future well being, and feelings of powerlessness accompanied by experiences of bullying. Parents identified themes of scrutiny and loss of privacy; uncertainty and fear about their child’s future; powerlessness; emotional, mental and physical exhaustion and turmoil. On the positive side, participants commented on increased feelings of belonging and support in the varied communities with which they identified. The findings point to significant problems and barriers to achieving integrated changes on the ground resulting from changes in the policy environment. Most of the changes experienced were not simple ‘before-and-after’ differences, but were cyclic, fragmented and often represented policy or technological development impeded or undermined in practice by lack of resources.

Click here to view the full paper