Book review - The Shouted Goodbye by Jeremy Ward
Reviewed by Jim Simpson, NSW CID advocate.
Jeremy Ward's personal memoir of raising a child with a disability, The Shouted Goodbye is the story of his daughter, Mena, who grabbed all of life’s opportunities, and his and his wife's determination that she have a full and inclusive life.
This is a must-read book for anyone who believes in a fully inclusive world for people with disabilities. It should also be compulsory reading for the many teachers, disability workers, bureaucrats and politicians who need to better understand and embrace this vision.
Mena Ward was born with an irrepressible joy and enthusiasm for life. She also had physical and intellectual disabilities.
Challenging all the assumptions and barriers in the service systems of the 1980s and 90s, her parents Jeremy and Margaret fought from the start for a full and inclusive life for Mena. After much thought and study, they spelt out their vision in, as Jeremy describes it in the book, “one simple statement: that Mena would be a valued citizen in her local community”.
“One simple statement: that Mena would be a valued citizen in her local community”.
Jeremy provides a clear and moving account of how he and Margaret worked with Mena to achieve this vision – fully inclusive schooling in a local primary school and then a state high school, a range of real jobs, and Mena moving into her own home. Each step required tenacity, ingenuity and great resilience from Margaret and Jeremy who faced and overcame obstacle after obstacle – battling through bureaucracies, narrow minded and insensitive attitudes and minimal funding.
Mena’s own aspirations set a cracking pace for her parents. Margaret and Jeremy had always hoped that she would have a home of her own in her mid-twenties. When Mena finished school, she announced she was moving out on her 19th birthday! So, her parents set to work to make it happen. And it did! With a mix of support from family, a small amount of funding and Mena’s dinner guests – 25 friends who each took it in turn to have dinner with Mena one night a month – somehow the Wards cobbled together the 24/7 support that Mena needed. It was worth it, Mena “glowed with the love of her own home, where she felt in control, in her own space, safe and secure”.
“Mena glowed with the love of her own home”.
The Wards were greatly assisted by circles of support they formed to advise and guide them through the challenges they faced month by month. Reading this book, you feel you know Mena well – her love of her office work in the city, of her vast collection of handbags and Abba, her emotional intelligence and great sense of humour. Despite her communication impairment, Mena managed to divert a taxi driver to a shopping centre leaving Jeremy frantic when she did not arrive home. He tracked her down to find that she had gone to buy a new watch. She looked at her father sheepishly. When he told friends the story, they said, “Good one, Mena! Go girl!”
As I read The Shouted Goodbye, I fluctuated through many strong emotions – anger, joy, sadness, laughter and deep admiration for Mena’s wonderful spirit and her parents’ absolute determination and resilience. As an Aussie bloke, I hardly ever cry. I shed tears in the last part of the book. Mena died far too young due to a rare degenerative condition. One sign of the success of her parents’ vision was the 400 people at her funeral. Local shopkeepers closed their doors so they could attend.
I have known Jeremy and Margaret through my advocacy work since the 1980s. Jeremy led the establishment of Queensland Advocacy Inc and Margaret was Deputy Chair of the Disability Advisory Council of Australia. They are longstanding leaders in family advocacy in Queensland and beyond. But this book is about Mena and how she grasped and loved all the opportunities that life offers. Mena’s life is a positive challenge for all of us who want a better world for people with disability.
The Shouted Goodbye is available in hard copy and as an ebook