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.