How fragile is the nature of progress with Down syndrome and social change, asks Ilektra Spandagou in the Australian Review of Public Affairs.
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 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.
Read more in the Australian Review of Public Affairs (40).