Down Syndrome, Social Change and the Fragile Nature of Progress

Down syndrome was first described by John Langdon Down 150 years ago. A child either has or has not Down syndrome and a diagnosis is definite soon after birth, but the experience of having Down syndrome is not static. As with prenatal diagnosis, medical progress has significantly affected those with this condition. The same discipline that substantially decreases the chances of a foetus with Down syndrome being born increases life expectancy and quality of life of the child after he or she is born. This does not mean that the politics of reproduction and of inclusion thrown up by Down syndrome are any less challenging today.

Ilektra Spandagou is a senior lecturer in inclusive education at the University of Sydney. Ilektra reviews Jan Gothard’s book Greater Expectations: Living with Down Syndrome in the 21st Century, which examines valuable insights for parents of Down syndrome children, those faced with prenatal indications of the condition, and those working with people with a disability. Whilst reflecting a history of social change in Western Australia the book also poses important wider questions about where we are, what it took to get there, and what is in the future.

This book has a particular interest as a local history but its relevance is much broader. As Fiona Stanley says in the foreword, it can provide valuable insights and understanding for parents of children with Down syndrome, for parents faced with indication of Down syndrome in prenatal testing, and to those working with people with a disability. The book is important in posing questions about where we are, what it took to get here, and what it is in the future. The struggles and gains of the last 50 years in the provision of services for people with Down syndrome and their carers are to be celebrated and protected

Ilektra Spandagou
Australian Review of Public Affairs
Tuesday 29th May, 2012

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