Life on the other side of the wall

Brigid was a legend. She lived in an institution for people with intellectual disability. Staff called her “the devil’s child”; some claimed that a scar on her stomach marked where Satan had entered her. In fact, she was their baby, not the devil’s.

Brigid, 26, had Downs syndrome and had been institutionalised since birth. As an adult she shared a locked unit with 20 other women who had what are euphemistically called “challenging behaviors”.

Brigid’s “challenges” included smearing and throwing faeces, stripping off her clothes and hitting and biting other inmates and staff. She was as brutal to herself as she was to others; she headbanged violently, throwing herself backwards into the wall or forwards on to tables or the floor, and punched and slapped herself.

In an effort to control her biting, authorities had removed her front teeth. Many of the women with whom she lived also had been subjected to this discipline-by-dentistry. It was one of the first things researcher Dr Kelley Johnson noticed about them.

Johnson, a senior lecturer in human services at Deakin University, spent hundreds of hours working in the locked unit in the early 1990s as part of a research project. She wanted to study why people were still kept in large institutions such as this and whether the push for greater rights for people with disabilities had forced such places to change.

Johnson has written about that time in Deinstitutionalising Women, in which she explores the lives of the 21 women in the unit and the way the institution dealt with them in society’s name. (To protect the women’s privacy, she has given them false names and renamed the institution “Hilltop”.)
Her first impressions were of a large room in which the women milled about, aimlessly, all day: “There was no furniture. The noise hit me, a wall of sound … One woman was standing in the centre of the room screaming … Others were shouting. The television was going. Some women walked around the room. Others sat on the floor. Some were undressed. One was naked … I was instantly surrounded by women who wanted to touch me or put their arms around me.”

Then there was “the smell of 27 women living and working in two rooms”. “It was the smell of food distributed in a closed space. It was the underlying smell of urine and faeces and the disinfectant used to clean the floors. It was the smell of breath tainted with drugs. The smell permeated everyone’s hair and clothing.”

Johnson says she abandoned her planned role of impartial observer in the first week to work with the staff. She found it impossible to stand back and not respond to need. “I would come home exhausted, hyper, stressed out,” she recalls.

The women were confined in this way ostensibly because they were unmanageable in a more open environment. But when Johnson searched their files, trying to piece together their histories, she found the original reasons for their incarceration were often undocumented.

The system abused human rights, she says: “Their families were not involved in the decisions around their entrance to a locked unit. There wasn’t one family I interviewed who knew precisely why their relative was placed in that unit.”
There was no regular independent review of individual’s situation to determine whether incarceration could still be justified: “I don’t know of any other group of people who could spend 10 to 15 years locked away somewhere without some sort of review
or questioning.”
Two women had been moved to the unit from other parts of the institution simply because they were thought to be sexually “at risk” of rape or pregnancy; one was suspected of having been abused by a male inmate. And there was no expectation that any of the women could be helped; rather, there was an understanding that they should be controlled. Several staff acknowledged that cramming the women together intensified their problems because they learnt bad habits from each other.
No attempt had been made to discover the causes of the women’s original problem behaviors (such as running away or screaming), and there were no systematic program in place to help them improve. “That was the thing that most devastated me in that unit – the lack of things to do,” Johnson says. “Such incredible boredom, day after day after day.”

By the time the women inmates had been there for some time, she says, it would have been almost impossible to disentangle their original problems from the effects of the environment and the side-effects of medications.

Grim as it sounds, life in the unit was not totally devoid of kindness. The structure of the institution was rigid and controlling, but many of the staff were warm and patient with the women. Some loved even Brigid, for her spirit and humor, although they took care only to accept her kisses when blown from the other side of the room.

“There was always a lot of affection,” Johnson says. “There were massages, there were hugs. It was a very feeling place, in a lot of ways. I have memories of staff sitting with some women who were in pain for hours, just stroking them, trying to make them comfortable.”

Johnson, too, came to see the women’s humanity and individuality, where at first she had seen undifferentiated chaos. She sensed in them a longing to be womanly and live normal lives. “One of the things that really catches at me now was their desperate attempts to match the societal stereotypes of women – to look pretty, to be attractive,” she says. “The women who could use at least a few words articulated that they wanted to have kids, to work. Where they couldn’t articulate it, they would sit to have their hair done or makeup put on.”

Johnson believes her time in the unit allowed her to understand how “normal” people can treat those with disabilities as fundamentally different. There were moments when she became caught up herself.

“These women had terrible lives. I think it was very painful for anyone to confront those lives and the decisions that had been made in relation to them. You look for ways to protect yourself from that guilt and anxiety, and so you depersonalise them.

“It’s very difficult to know what these women made of the lives they led, what they felt about it, or what their inner desires were, because they couldn’t articulate them.”

During Johnson’s study, the then State Government announced Hilltop’s closure. Some of the women were relocated to community residential units, four- or five-bedroom houses staffed by carers. But not everyone was so fortunate. Brigid finished up in a country institution not unlike Hilltop.

“Some are better off now, but it’s not a fairy story; they don’t live happily ever after,” Johnson says. “The women who went into the community – I would have to say that their living conditions are incredibly better. They went into largely new housing where they had their own bedrooms and didn’t have to go through three locked doors to get a glass of water; where there were things to do.

“One woman took me out into the garden and showed me the strawberries and rhubarb she had helped plant. Another had helped make the cake we had for afternoon tea. ‘Laura’ had screamed a lot in the unit, but her screaming reduced considerably and then stopped some weeks after moving. That’s not true of all the woman. Others carried their behaviors with them.”
Johnson’s work cannot be consigned to history. Successive governments have continued to pursue a partial policy of returning people with disabilities to the community, but several large institutions remain, including those at Kew and Colac. Some have locked units, and others have units that are locked in all but name (“They remove the doorknobs from the inside,” Johnson says.)

She is concerned that there is a trend for governments worldwide to move back towards large institutions and says Victoria has recently committed resources to refurbishing some old institutions and building new ones.

She would like to see all large institutions closed. The living conditions at those remaining are probably better than at Hilltop, she says, but they share a similar structure and style. Johnson believes big institutions inevitably develop a culture in which the individual’s difficulties are viewed only from the administration’s perspective, as “management problems”.

She acknowledges there will always be some people so severely disabled that they require high levels of support. “But for the life of me, I can’t see why that has to happen in big places,” she says. She grimaces. “Other than for economic reasons.”

* Deinstitutionalising Women: An ethnographic study of institutional closure, by Kelley Johnson, Cambridge University Press, $29.95.

First published in The Age.

This woman’s war

Betty Jeffrey must have been destined to live a long life. It’s hard to believe luck alone could have seen her through so much. Take the time she was sterilising instruments on a primus stove in a marquee on a tennis court in Malaya, where she was nursing wounded Australian troops in 1942.

She’d delayed taking cover when shelling started because the instruments were about to boil. A piece of shrapnel came whizzing into the tent, heading her way. One of the men cried out to her and, because she turned her head to answer, the hot metal missed her skull and merely grazed her cheek. The resulting welt lasted weeks.

Later that day, she took the walking wounded to a trench for protection during shelling. She recalls, “They were there for quite a while, and I thought, ‘It’s quiet now; I’ll go out and do their dressings.’
“I was halfway across the lawn when this lone bomber came across very low, just above the tree tops, machine-gunning the ground all the way. I just held the instrument tray above my head; it had a cloth with a red cross on it. He turned the gun off as he passed over me and then on again.”

Jeffrey was one of a group of Australian army nurses and other women and children captured by the Japanese and starved in prison camps on Sumatra for three-and-a -half years. Part of her story is being retold in a new anthology, As We Wave You Goodbye: Australian Women and War, edited by historian Jan Bassett.

The anthology includes a chapter from Jeffrey’s 1954 book, White Coolies, in which she described her years as a prisoner-of-war. Bruce Beresford’s 1997 film Paradise Road is based partly on her diaries.

Jeffrey, now 90, is still living alone and independently (she never married) in her sunny flat in Melbourne’s eastern suburbs. She is uncomfortable with this latest round of publicity, conscious that she was just one of many and reluctant to make much of things that, at the time, simply had to be taken in one’s stride. This was a group for whom duty and service were paramount. She says quietly: “Every one of those girls can tell you stories like this. We were really in the war.”

“Those girls” are the army nurses who served on Singapore with Jeffrey. Most were evacuated safely before it fell to the Japanese in February 1942, but Jeffrey and 64 others had to wait for a second ship, the Vyner Brooke. They were not so lucky. They were attacked two days out of Singapore.

Jeffrey remembers: “There were three (Japanese) planes. They (machine-gunned) the lifeboats before they attacked; they were close enough to see that the ship was full of women and kids.

“They got a bomb down the funnel and then the ship itself. The bridge burst open and it went down in minutes.” Jeffrey and her matron were last off the ship, helping others into lifebelts, lowering what was left of the lifeboats and throwing overboard those too frightened to jump.

She and another nurse who could swim, Iole Harper, spent the next few hours tying fellow survivors to bits of flotsam and teaching them how to paddle in the direction of the low blue line that was the shore, 16 kilometres away. Jeffrey remembers no fear, but looking back, she says, it’s clear they were all in a blessed state of shock.

Her matron and the women and children on the matron’s raft were swept out to sea and never seen again. “Matron could do everything except swim and row,” she says sadly. “Nobody knows how many drowned. There were no records in Singapore.”

Jeffrey and Harper made it to shore. They cursed the coastal mangrove swamps through which they swam and trudged for hours, almost eaten alive by insects. They struggled from one fallen treetrunk to another until one of the trunks slid into the water with a splash – it was a crocodile. Eventually they were found by locals who took them to a village, where they were picked up by a Japanese patrol.

“Something goes wrong in your mind; you remember the good bits and you forget the awful bits.”

It was much later that they heard of the slaughter of other Vyner Brooke survivors further up the coast. Japanese troops had ordered civilian women and children and 22 army nurses to walk into the sea. Then they machine-gunned them from behind. The lone survivor, army nurse Vivian Bullwinkel, later joined Jeffrey in a prisoner-of-war camp. A total of 32 in the camp of 300 or so were survivors of the Vyner Brooke.

Jeffrey had wanted to be an army nurse from the time she was 12; she remembers hanging out of a tree and telling a visiting auntie so. She says she had always been adventurous and sensed that nursing troops meant adventure. So she signed up for the army reserve the moment she completed her nursing studies in 1937, aware that war was looming and nurses would be needed. “I thought, if there’s going to be a war, I’ll be in it! And was I ever.” She was called up in 1941 and sent to Malaya and then Singapore.

Ask Jeffrey today what life was like as a prisoner-of-war and she remembers first the camaraderie, the laughter and the makeshift games and concerts the women invented to keep their spirits up. “Something goes wrong in your mind,” says Jeffrey, “you remember the good bits and you forget the awful bits.”

The bad things come back into focus after we sift through the physical mementoes of her war. They are packed away in a small leather suitcase tied up with string and include copies of the musical scores, photo albums and a small, stained exercise book she stole from the desk of a Japanese officer. She hid the book throughout her imprisonment, filling it with sketches of camp life, Malay words she was trying to learn and dozens of recipes: cheese croquettes, breast of veal, chocolate eclairs.

The recipes were an attempt to ease the hunger and thirst, she says: “You wrote the recipes, your mouth would fill with water, you’d swallow it and then you’d feel like you’d had something to drink. In one of the camps there were 300 of us and one tap; it had no handle and only dripped.”

The women subsisted on a couple of handfuls of rice a day, supplemented by vegetable rubbish left over from the locals’ market stalls. The Japanese would tumble the shovellings straight on to the dusty road outside the camp, leaving them there two or three days in the tropical heat. “They were rotten, absolutely rotten,” Jeffrey says. “No wonder we all got dysentery.”

Sanitary arrangements were, at best, primitive and, at worst, in the final camp, non-existent; the flowing river that delighted the women on first sight turned out to be the public latrine for the whole region – and they were at the end of the line.

They were refused medicines and there was death after death from malnutrition, infected tropical ulcers, beri-beri and tropical fevers. Nurses who were so ill they could barely stand nursed dying comrades, unable to provide them with even basic comforts. Of the 65 young army nurses who left on the Vyner Brooke, only 24 came home to Australia.

After liberation in September 1945, the women discovered a nearby Japanese storeroom was loaded floor to ceiling with Western food and medicines, and that fresh fruit was rotting on trees outside the camp.

Jeffrey returned to Australia gaunt, weighing less than 30 kilograms. She had “all the malarias” and tuberculosis. After having been separated from her family for four years, she was forced to spend another two in hospital recuperating. She was well for several years after this, but her health collapsed again in the ’50s.

What does she think now of the Japanese? Her face goes blank. “I don’t think about them. I just don’t think about them.”

She visited Japan as a tourist after the war: “I was told by one of the doctors who was also a PoW, ‘You’ve got to get this out of your system; go to Japan. It’s a beautiful country’. I went to Japan and loved it. It did get it out of me, the hatred.”
But, while her rational mental processes have been brought to heel, there are other avenues to memory she finds harder to block. Smells and sounds – cooking aromas and chatter from young Asian neighbors – can throw her back unexpectedly and most distressingly.

Looking back, she says, there are no choices she would have made differently, but there is one thing she would change if she could: “I would bring all those girls home, instead of them dying in the prison camp. Bonza girls, they were.”

First published in The Age.