All this changed when Anne decided to share her family's experience of mental illness in a major newspaper story. There was little public discussion of schizophrenia in those days, and much misunderstanding and prejudice associated with the condition. The article had a big impact. Anne received many letters from other families affected, thanking her for speaking out. She also received a letter from Dr Margaret Leggatt.
‘Marg wrote the most wonderful letter saying it’s obvious you’re having a very difficult time, do you want to meet up? And it was the beginning of a long friendship that remains,’ says Anne.
‘It was out of that meeting that we talked about setting up a group of people to see what things we could do together that would be really helpful.’
The two women agreed on the need for a national campaign to raise awareness of mental illness. They approached prominent business people to fund the campaign.
‘These were well-established business people who had never talked about the fact that any of their children had a serious mental illness because they were ashamed of it,’ says Anne.
As the campaign grew momentum, with advertisements on billboards and television, Anne recalls that many fellow journalists were aware of discrimination and fear surrounding mental illness but found it difficult to cover.
‘I tried to get the press involved in a more helpful way. On one page you’d have a piece about schizophrenia with the problems well presented, but the lurid illustration was guaranteed to get people running away in fright.’
During this time Anne and Marg organized a public meeting at Sydney’s Teacher’s Federation Hall, inviting as many people as possible.
‘Even for someone like me, who was operating pretty openly as a journalist on these matters, it wasn’t easy to get people to come along.
‘I remember it was a filthy, stormy night and we thought nobody would turn up but it was packed to the rafters.’
As the group began to openly talk a young man who had been sitting at the front, playing with bits of string, suddenly stood up and said, “My name is Simon Champ and I have schizophrenia”.
‘An enormous sigh went around the hall and then everyone applauded him,’ reflects Anne.
Anne says the memory still brings tears to her eyes because Simon was the only one brave enough, despite the stigma, to disclose his mental illness.
‘That was the beginning of another round of openness in society.’
After the death of Anne’s son, Jonathan, at age 24, Anne wrote a memoir about him and the effects of his illness on her family. The compelling and heart-rending story, Tell Me I’m Here, became a bestseller and went on to win Australia's Human Rights Non-fiction Award in 1991.
‘Jonathan became a pathfinder for people with mental illness,’ says Anne.
Even though there is more research on mental illness, treatment, and community care these days, Anne says there is still more work to do in helping people living with mental illness lead a fulfilling life.
‘It’s a basic need that all of us have – we want to feel valued, we want to enjoy ourselves. We never allowed people with a mental illness to have their own humanity and that is what is changing.’
Anne Deveson died in December 2016. Read SANE CEO Jack Heath's tribute.