A champion for people with disabilities

Most people know Rosemary through the book and the film Annie’s Coming Out. Back in 1975 Anne McDonald was a child with severe cerebral palsy in St Nicholas Hospital, a Melbourne institution for people with profound mental disabilities, and Rosemary was working there as a playleader. Annie couldn’t walk, talk, or feed herself. Rosemary detected signs of intelligence, nonetheless, followed them up, and eventually enabled Annie to communicate by pointing at letters on an alphabet board.

The hospital administration was outraged by any suggestion that it was misassessing residents and fought Rosemary all the way. Eventually Annie asked to leave St Nicholas. It took two cases in the Victorian Supreme Court, but Annie won, and she and Rosemary, along with Rosemary’s equally amazing partner, Chris Borthwick, my work colleague, lived together for the next 30 years.

The book that Rosemary and Annie wrote together, and the film that was made of it, fuelled the deinstitutionalisation movement, and St Nicholas Hospital was closed, followed by most other similar large institutions across Victoria and eventually around Australia.

What sticks with me is that when Annie was admitted to St Nicholas in 1964 at the age of four she weighed 12 kilos. When Rosemary first took Annie home for a visit in 1976 she was 15 years old and weighed 12 kilos. She’d gained nothing in eleven years. That’s not normal.

Well, it’s not normal now. At the time, the doctors and nurses and dieticians charged with the children’s welfare thought it was more or less OK. The dieticians looked at the food allotted to each child and saw it was adequate, and didn’t take into account that when ward staff had to hand-feed ten severely disabled children in an hour, most of that food wasn’t going to make it into the kids. The doctors asked for more ward staff, were refused on budget grounds, and thought they’d done their best.

And everybody concerned looked at the wards of underweight children lying on the floor (because there weren’t any wheelchairs for them) and thought their small stature must be a consequence of their severe physical disabilities. Even Rosemary herself, who certainly did notice that Annie and the others weren’t getting enough food, didn’t really think that their tiny stature was something that was remediable. Annie was 15, and most people finish growing around then.

St Nicholas held about 160 kids, and by the time Rosemary got there, ten years after it opened, about 160 of its residents had died. That didn’t mean there had been a complete turnover – new admissions tended to die more quickly, for some reason, and Annie was pretty tough – but it does suggest that nobody really saw keeping these children alive as a high priority in the system. At one point, in fact, the hospital’s annual report suggested that a marginally increased survival rate was causing problems in housing the new admissions.

Everybody thought that kids with severe disabilities had to be small, because all the kids in the hospital were. The only way to prove that this wasn’t so was to change the experimental parameters, and that’s what Rosemary and Annie did.

Annie lived with Rosemary and Chris, and ate as much as she wanted, which was lots. And she grew. She grew more after 15 than anybody ever has.

She weighed 12 kilos at the age of 15. Seven years later she weighed 38 kilos And she wasn’t just getting fatter: she also grew 40 centimetres in height. She ended up in the normal range all over.

That proved it. The children weren’t small because of their disabilities. They were small because they’d been starved.

Rosemary mentioned this in the later editions of Annie’s Coming Out, but she didn’t try to splash it on to the evening news – by that time, the government had committed to closing the institutions and she’d moved on to arguments over communication and had successfully set up a centre to help people with little or no functional speech. She spent the rest of her life on that. She was able to close the institutions; closing the special schools turned out to be a lot more difficult – but that’s another story.

Nobody’s bothered to keep the records of the big institutions – the files have been thrown out to save shelf space. Historians don’t touch on these things, even in a footnote. A brutal stain on Australian history is fading away. Today, of course, abuse of people with disabilities is more muted, and more private. Hardly anybody now seems to remember that in my lifetime children were effectively starved to death in a government facility just a short walk from Parliament House.

And Rosemary stopped it. An extraordinary Australian and a world leader. Bravo my friend.

Denis Moriarty is group managing director, Our Community.