A new book by Murdoch University Associate Professor Jan Gothard looks at the varied attitudes and approaches which together make up the rich experience of living with Down syndrome in a changing society.
Greater Expectations – Living with Down Syndrome in the 21st Century is based on more than 60 personal interviews and supported by scholarly research. It has just been launched by Fremantle Press to mark the 25th anniversary of the Down Syndrome Association of Western Australia and International Down Syndrome Day.
Jan, whose daughter Maddie has Down syndrome, said her own experience was fundamental to the book.
She said: “Until Maddie was born, disability was an invisible area to me. Our family’s experience opened my mind to disability and made me aware of what some of the issues are for other individuals and families. The book as a whole is framed around these issues because we’ve lived them – which is not to say the issues are always the same for every family. This book is based on more than 60 personal interviews for that reason.
“For all of the people I interviewed the main focus was doing the best thing for their child. It is the person you love; and disability is just another aspect of that person.”
Jan said being exposed to the world of disability through Maddie had changed her. “As an academic, I was aware of disability as a dimension of social difference, but it was only when my daughter was born that that world really opened up to me,” she said.
“I think that living with Maddie has taught me to be more patient and tolerant, and to recognise that academic, employment or sporting achievements are no way to measure someone’s worth, if indeed you have to evaluate people at all.”
Jan is hoping the book will be read by people outside the Down syndrome community. She said: “I think the book will be relevant for people who have experienced living with Down syndrome and with disability more generally, but to me this book is about a larger social question. It is about inclusion, and inclusion is a two-way process. People with disability are fighting for their right to be included, but the rest of society has got to be prepared to open doors.
“So I hope this book will be read by people who don’t yet think about disability – and make them think about it.”
All author royalties generated from the sale of the book will go to the Down Syndrome Association of Western Australia.