Discussion paper

Shut out: The experience of people with disabilities and their families in Australia

11 Aug 2009

Once shut in, many people with disabilities now find themselves shut out. People with disabilities may be present in our community, but too few are actually part of it.

This discussion paper asked people with disabilities and their families, friends and carers to identify the main barriers to their full participation in the economic and social life of the community.

In late 2008, the Australian Government released a discussion paper asking the community to respond to a series of questions about their experience of disability (see Appendix A). The consultations were intended to inform the development of a National Disability Strategy. Reflecting the Australian Government’s commitment to social inclusion, the aim of the National Disability Strategy is to ensure that people with disabilities have the opportunity to fully participate in the economic, social and cultural life of the nation. Developed by the Commonwealth in partnership with state and territory governments, the National Disability Strategy offers an unprecedented opportunity to articulate a clear vision and to marshal resources towards the achievement of common goals. It will galvanise and direct coordinated action between all levels of government to close the gap between the lived experience of people with disabilities and the rest of the Australian community.

More than 750 submissions were received in response to the discussion paper, more than half of which were from individuals and the remainder from a range of organisations (see Appendix B). This overwhelming response from ordinary Australians, so often excluded from the process of policy development, is an important indication of the depth of feeling among people with disabilities and their families, friends and carers. They have long called for change. Now they want to see it.

More than 2,500 people also attended consultations in capital cities in every state and territory of Australia, as well as in regional and remote areas (see Appendix C). These sometimes fiery, often sad and occasionally funny meetings provided unique insight into the day-to-day struggles of Australians with disabilities.

All direct quotes in this report are drawn from the submissions and material obtained during the consultation process. In some cases identifying information has been removed to ensure anonymity, but otherwise all quotes preserve the original words of the writer or speaker.

While the issues raised were many and varied, a clear picture emerged from the consultations and submissions. People with disabilities may be present in the community but most do not enjoy full participation in it. Discrimination and exclusion are frustrating features of daily life. People in wheelchairs cannot access the public facilities taken for granted by others in the community, such as playgrounds, swimming pools, cinemas, restaurants, hotels and cafes. Children with disabilities find themselves excluded from local kindergartens and schools. Qualified and competent candidates for jobs are rejected because of their disability. People with mobility aids have difficulty regularly accessing public transport. People with various disabilities are unable to access the aids, equipment and technology essential to their daily functioning, and are unable to access the support required to get them out of bed in the morning.

The general public believes much has changed in the past 30 years. And it is true that important gains have been made. But the prosperity of recent times has not been shared equally. People with disabilities feel forgotten. The tales told in the submissions are heart-wrenching and distressing. Page after page tells of suffering and despair. There is also enormous frustration and anger at a lack of progress after so long.

But there were also tales of survival, of immense personal strength and determination. Again and again, people with disabilities and their families, friends and carers demonstrated their resilience. These were tales of success. Many people demonstrated considerable courage in telling their stories in submissions and at public consultations. Their willingness to reveal personal details in such a public manner was an indication of their deep desire and determination to see change.

Many people described their lives as a constant struggle—for support, for resources, for basic necessities, for recognition. Over and over participants made the comment that it should not require such extraordinary effort to live an ordinary life.


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