As an activist for the rights of people with a disability Rob McNamara was living proof that having a severe disability need not be a barrier to an active and fulfilling life. Rob lived his life in the community and relished every moment of that existence. He was a son, brother, uncle, friend, student, colleague, lover, husband, father, sports fanatic and passionate Collingwood supporter - he was never defined solely by his disability.
Rob was diagnosed with muscular dystrophy as a child and he was not expected to live to adulthood. He died at the age of 47. For much of his life he used a wheelchair to get around and relied on various forms of ventilation. He depended on assistance from others for his physical needs.
Thanks to his mother's determination to ignore the medical 'wisdom' of the day and follow her own instincts instead, Rob lead a very ordinary life - something denied to most people with disabilities of his generation. Rob grew up with his family, attended regular primary and high schools, gained a degree in sociology from Monash University and went on to work in the human services field. He had a busy social life and a wide circle of friends, and experimented with sex, drugs and rock 'n' roll. He moved out of home and lived in a series of shared households before settling down to life with me - 'marriage, a house in the suburbs, a mortgage and a dog'. When our son, Tim, was born Rob had fulfilled all his dreams that had once seemed unattainable.
The richness of Rob's life in the community was made possible through the support of many friends, volunteers, support workers and sensitive professionals. But in all ways Rob gave as good as he got. He was warm and open, wise and welcoming - his friendship enriched the lives of those around him. By the same token he never put up with injustice or condescension.
Concern for social justice and the aspirations of other people distinguished both Rob's personal and public life. He was prominent in the disability rights movement for several decades and worked extensively in the community services and disability areas. He was one of the prime movers in the establishment of Australia's first attendant support service (now known as DASSI), the forerunner to programs now operating Australia-wide. His vision and passion for change were recognised in 1990 when he was awarded an Order of Australia for services to people with a disability.
This book was a labour of love. His own father died when he was very young and Rob always regretted not having known him and his life story. Being aware that he may not be around to tell Tim himself, Rob was determined to write his story so that Tim would know his dad. He had also wanted to write a book about the politics of disability. Rob being who he was, the two inevitably became interwoven in this warm and personal, but also very political, story of an extraordinary ordinary life.
Cath McNamara
June 2005
