Tag Archives: Human Rights

Third World women the next big-tobacco targets

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ONCE UPON a time, there was a beautiful woman with long, blonde hair and even longer legs. She was cool and confident and glamorous, in the original sense of the word; “glamor” used to be a spell of illusion cast by a witch.

That was her line of work, too, in a way. This woman was photographed by a cigarette company nonchalantly holding its product, with the caption, “You’ve come a long way, baby.”

And a lot of other women who longed for what she was supposed to symbolise – freedom, autonomy, success – bought the cigarette she was selling. And presumably some of them died for having confused a cancer stick with their dreams.

These days cigarette advertising in Australia is virtually banned, except at the point of sale. But the smoking rates of young women here now outstrip those of young men, and it is feared that worldwide women might eventually overtake men as the chief victims of smoking-related disease.

The tobacco industry has turned its heaviest guns on the young women of the Third World, which is far less regulated than Australia. They are being bombarded with messages linking smoking with Western-style equality, personal freedom and a fashionableness. The World Health Organisation fears the result will be a catastrophic epidemic of tobacco-related illness.

A recent WHO conference on women and smoking in Kobe, Japan, reported that of the world’s 1.1 billion smokers, 200 million are women. That proportion is set to triple in the next 25 years.

In the past decade tobacco companies have managed to double the proportion of smokers among young Japanese women aged 20-29, from 10 per cent in 1986 to 23 per cent this year. In the same period, the overall percentage of Japanese men who smoke fell from 60 per cent to 53 per cent.

WHO reports figures that must have tobacco companies slavering with anticipation: “In China, only 6per cent of women currently smoke, while in Vietnam the figure is just 4per cent. However, if China’s smoking rate for women doubled to near the same rate currently seen in Japan, there would be an additional 40 million smokers in that country alone.”

According to the World Bank, tobacco-induced disease and subsequent health care costs already result in a global net loss of $200billion a year – more than the GNPs of Malaysia and Singapore combined. WHO predicts that by 2025, 10 million people a year will die unnecessarily as a result of smoking, 70 per cent of them in developing countries.

This is a human catastrophe, not just a female one. But there is a growing realisation in international health circles that marketing manipulation of female psychology is a big part of the problem, and that health authorities must tackle the special vulnerabilities of women and girls. The “Kobe Declaration” passed at the conference urged WHO to fully integrate the special needs of women and girls into a proposed international treaty on tobacco control.

The Framework Convention on Tobacco Control will be the first legally binding international treaty aimed at curbing the spread of tobacco products. The aim is to implement it by 2003, and measures being considered include raising tobacco taxes sky-high and banning advertising, promotion and packaging of tobacco products worldwide.

It’s enough to give a cigarette company executive a heart attack. Some might call that karma.

Traditionally Asian women have been protected from the industry’s predations by cultural norms that perceived smoking as unfeminine or a sign of promiscuity. But westernised Asian women with more money for leisure and a belief that smoking is sophisticated and helps with weight control are smoking in increasing numbers.

Even in Australia, research shows significantly more girls than boys aged 14 to 17 are smokers; the you’ve-come-a-long-way-baby syndrome starts young.

It is cruel and paradoxical that women’s healthy goals for themselves – freedom and autonomy – are subverted by marketing into a desire for a product that kills and maims. The supposedly glamorous cigarette damages women in their very femaleness: it causes premature menopause, cancer of the cervix and vulva, infertility, miscarriage and stillbirth, and osteoporosis.

The most fitting archetypal association with it is not advertising’s nubile young woman but the hunched, barren, wrinkled crone.

The Kobe conference concluded that the single most effective way of combating the tobacco industry would be raising taxes on cigarettes.

But it seems important for the sake of women’s health that more is done to break the nexus between smoking and perceived glamor. The Kobe conference suggested that all smokes should be packaged in plain black-and-white wrappers covered in health information.

The Canadian Government might have a better idea. It is currently floating proposals to force cigarette packs to carry large and gruesome photos of cancerous lungs or bloodied brains that suffered terminal strokes.

It would be hard to look glamorous hoisting that out of your handbag.

First published in The Age.

Indonesia’s voice of dissent has some good news

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GOENAWAN Mohamad’s mother did not raise him to be one of Indonesia’s most prominent dissidents. Perhaps the ghost of his father did.

Mohamad makes a silent shooting gesture to describe how his father died. “He was a political activist. He and my mother were exiled to West Irian in the ’20s, before I was born. They were left wing. Then they brought him home to Java, with my mother. Maybe he cooperated with the Dutch (colonial regime) for a while; I don’t know.

“But after the Japanese were defeated in World War II, the Dutch tried to return. I’m not sure exactly what he did; maybe a lot of meetings. One day they came to fetch him and executed him without trial.”

Mohamad was five. He has few memories and no photographs of his father. His family lost all their mementoes when they fled to the mountains with other guerrillas, leaving the Dutch to seize and burn their homes.

After what had happened to the family, he says, his mother did not want to instil political activism in her six children. “But education was the first priority. My father told my mother, `If anything happens to me, you should bury your jewellery so you can use it for the children’s education.”‘

She did just that, helping mould a son who became an analytic and relentless critic of government repression. For more than 25 years Mohamad was managing editor of Tempo magazine, Indonesia’s equivalent of Time and one of the few publications to report fearlessly on the nation’s politics.

In 1994, President Suharto banned Tempo for its uncompromising coverage of an expensive Government defence bungle, sparking worldwide protests. Mohamad fought hard against the ban – late last year, in the era of Reformasi, the magazine was relaunched – and has written widely on Indonesian identity, democracy and freedom. His book of essays, Sidelines: Writings from Tempo, was published in Australia in 1994.

He left Tempo last year to devote himself to the Institute for the Study of the Free Flow of Information, a body he created to circumvent government censorship. He was in Melbourne this week to deliver the Asialink 1999 Kenneth and Yasuko Myer Walkley Asia Media Lecture.

How was he drawn to journalism? “Well, I always wanted to be a writer, and writing doesn’t pay, really.” He gives a conspiratorial chuckle. “Journalism is a good combination, and in my case it brought a lot of money, when I was the editor.”

It also brought surveillance of his house, tapping of his phones and, during two separate bans on Tempo, loss of his job and income. “When we were banned for the first time, I told my friends that working in this kind of job you had to be prepared for the worst. That’s why you have to marry spouses who have jobs.”
He laughs again, amused by the pragmatic requirements of a life of subversion. He and others have maintained their covert networks despite the recent freeing up of media. Publications no longer need a government licence and the Department of Information has been disbanded, but Mohamad does not trust to the future.

“When you have gone through this long period of repression, you never take freedom for granted. That’s why we still have the underground.”

After Tempo was banned, one group of journalists used the Internet to set up Tempo Online – “We had to stay visible; we had to demonstrate to the Government that we defied them” – while Mohamad founded ISAI using principles established by Palestinians under Israeli rule.

“We created forum meetings in several places in Indonesia. We trained students to improve their political communication skills, gave awards to the best student newspaper. We created underground publications, books, magazines and even a news agency on the Internet. The Government focused on Tempo Online, but other channels were being created without the Government’s knowledge.

“The number of people with access to phone lines and computers was and is very small. But this forum we created, the student groups, they downloaded material and printed it and distributed it. Sometimes they sold it to finance the movement. Indonesia now has a more organised underground and information network than ever.”

Media freedom depends on democracy, and Mohamad is wary because Indonesia’s democracy is still fragile. “It faces many problems. First, the so-called national disintegration (the unrest in places such as Aceh and the Moluccas, chafing under the rule of central government). I think the break-up is inevitable because the present government and the past government have done too little, too late. Second, the weakness of the democratic traditions like political parties, local governments and labor unions.”

These make attempts to establish a democratic regime “like reinventing Indonesia”, he says. “It’s like issuing a new edition of the country. So now that we have a government that’s popularly elected, it’s rather amateurish and dangerously erratic. The President travels so much; he says the Australian Government is being childish.” He shakes his head.

Australians are often accused of misunderstanding Asia. Mohamad himself once accused the Australian media of regarding the Indonesian Government’s aversion to them as an inverted compliment. He said Australians were not willing to take the time to learn what Indonesia was like. Now he takes a softer, more reflective line on cross-cultural confusion.

“Nobody can claim that he or she can understand Indonesia, not even Indonesians. And newspapers are not only the creation of journalists; they are also the creation of the reader. In poetry and fiction you don’t have to really worry about what the readers are aware of; in journalism you have to. Every time you want to write, even if you are smart and very knowledgeable about the country, you have to think about your reader in Australia or Ireland or Brazil.

“It’s not just culture. It’s geography, it’s history, it’s the limit of the human capacity to know. What do Indonesians know about Malaysia or Australia? Nothing. So why should we blame others for not understanding us?”

Mohamad’s life journey, like his father’s, has been interwoven with the historic ebb and flow of forces in his nation. As a public figure who has vigorously championed free speech, he is much admired. Is he a hero?

He is instantly dismissive. “I believe `hero’ is a false identity. What matters is not being a hero; what matters in the human life is heroic deeds. Somebody who did heroic acts might also some day do stupid acts, indefensible things, and to proclaim someone a hero is to put him or her in a category where you forgive everything of them. So I believe in heroic acts, but not heroes.”

But he does admit to putting one man on a pedestal: “Mandela. He saved the 20th century from cynicism. The most valuable thing a person can do for his fellow human beings is to create hope, and to create hope is not to talk about the future but to indicate that mankind is worthwhile.”

He falls silent. A good journalist recognises when no more need be said.

First published in The Age.

Free at last, with little to celebrate MENTAL HEALTH

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“JOHN” supposes, rather tiredly, that he should buy a bottle of champagne to celebrate the 14th anniversary of his release from a mental hospital. A man with severe schizophrenia, he was locked up from the ages of 17 until 31 in his home state of Western Australia.

He spent most of those years either being forced to make toys, or sit around aimlessly watching television, watching the world go by. He is now free of the petty cruelties of that institutionalised world, such as the injections from a nurse who liked to blunt needles on a concrete floor before using them.

But he can’t see much reason to celebrate his new life. He spends most of his time sitting in a small, bare housing ministry flat, smoking, his only regular visitor the psychiatric nurse who brings his fortnightly injections.

John is quietly spoken, but looks dishevelled and often scratches himself, a legacy of rashes he caught while sleeping rough. For 11 of his 14 years of “freedom” he wandered homeless on the nation’s highways, sleeping in parks or on roadsides.

His appearance today does not go down well with the locals. “You walk down the street and people call you names,” he says. “You don’t go into places because they say you’re bad for business. One caf owner threatened to put a false charge against me because I used to have a pot of tea, but nothing to eat.”
John does not want his real name used because he fears it could lead to abuse.

He would not want to go back to hospital, but says he is not really happier now than when he was institutionalised. “No, not really,” he says. “They got it all wrong. They just threw everybody out on the streets, and when the community know you have a psychiatric problem, they don’t want to help you at all. Sometimes I think, would I rather be in, or would I rather be out?”

He feels he has too little to show for his 45 years of life. “I should have something of my own, not something I get for free. I used to earn $350 a week as a rouseabout on a sheep station when the wool industry peaked. I could have been a shearer, a wool presser, anything.”

But he sees little hope now of his situation improving. “The medicine makes me very sleepy, low energy. I can’t imagine myself driving a car. I will never be able to understand or know the real me because I’m sedated 12 months of the year.”

Ask him about his symptoms and his manner remains matter-of-fact but he starts telling bizarre stories that, on some level, he recognises as being part of his illness. “I got picked up by a dead person in a ghost truck,” he says. “There’s one between Sydney and Melbourne. I shook his hand and it was freezing, his body was ice cold. He definitely was dead as a doornail.”

Then there are the voices in his head: “They are looking for something,” he says. “They are questioning where we are living, where we should go from here.”

His plans, then? “I don’t know, really. I suppose I should get my act together to buy this bottle of champagne. I don’t know.”

First published in The Age.

Has a well-intentioned policy gone too far? MENTAL HEALTH

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MAUREEN O’BRIEN reels off the stories. There was the young man who killed himself by ramming a car into a tree, after support services had been withdrawn because he was considered well enough to manage without them. Her own son, Paul, who had severe schizophrenia, once took a knife to his brother-in-law but was kept in hospital for only three days. Eight hours after Paul was admitted, the hospital rang to tell his mother to come and pick him up, saying: “He’s had a good sleep now.”

O’Brien refused, arguing that her son needed more help to stabilise his mental condition. He was discharged anyway. A week later he tried to kill himself with an overdose.

O’Brien, who is convenor of a support group for carers of schizophrenia sufferers, talks of another mother whose son “was so out of it” that his one bent in life was to kill his father. “The hospital staff … told the father not to come anywhere near him. A new psychiatrist came in on the Friday and the boy was discharged on the Monday. On another occasion this boy had gone on a suicide run and ended up in a four-car pile-up. They had to helicopter four people out.”

It wasn’t meant to be like this. Victoria has been hailed as a national and even world leader in providing modern mental health services. It has moved away from institutionalisation and into community care faster and more fully than anywhere else in Australia.

No one wants a return to the big, isolated psychiatric hospitals in which people were shut away in Dickensian conditions. But, both here and overseas, people are asking whether deinstitutionalisation of people with psychiatric illness has gone too far, depriving some seriously ill people of the intensive help they need.

In Britain, it was not compassion for sufferers but anxiety over public safety that triggered a new look at the issue. There was a public furore after 150 killings in six years by people with mental illness.

A former mental health worker, Jayne Zito, campaigned passionately for policy change after her husband, Jonathan, was stabbed in a tube station in 1992 by a patient with a history of psychosis and violence.

The British Government concluded that “community care” had left too many wandering the streets and sleeping rough. (In Australia, an estimated 25per cent of the homeless have a psychiatric disability.) It promised a network of nursed “safe haven” hostels and more psychiatric beds. But it did not take up advocates’ demands for legislation to give people with mental illness a right to treatment.

Britain’s swing back to a more punitive and custodial mentality disturbs Australian observers, who worry that deinstitutionalisation, there and here, has been blamed for problems that are really due to inadequate resourcing.

The man with paranoid schizophrenia who killed Jonathan Zito because he thought he was a devil “had also knocked on the doors of services begging to be admitted for days before it happened”, according to Bill Healy, head of social work and social policy at LaTrobe University. “That’s an example of an absolutely tragic event that can be distorted out of all proportion and finish up serving frightening political ends, such as the conclusion that we should lock people up.”

Deinstitutionalisation aims to give people the support they need to live in the community. In Victoria, acute care has moved from old psychiatric hospitals to general hospitals. Mobile support teams and emergency teams treat psychiatric patients in their home. Sixty per cent of Victoria’s mental health resources are now allocated to community care compared with 32 per cent in 1992-3. The number of registered clients of services has increased by 40 per cent, and Victoria now spends more per capita on specialist mental health services than other states ($76.20 compared with a national average of $68.78).

Community care dovetails with human rights goals to treat people with mental illness in the least restrictive and stigmatising way possible. Medically and socially, it is better for most patients and their families. But Australian carers say that while the problem used to be that some people with mental illness could not escape hospital, now they often can’t get in, even when they beg for help. Isabell Collins, director of the Victorian Mental Health Awareness Council, knows of people who have slashed their wrists or taken overdoses in order to get a hospital bed. Says one woman who has schizo-affective disorder (a combination of schizophrenia and what used to be called manic depression): “Basically, to get into hospital now, you don’t talk suicide. You talk homicide.”

Many carers say services are so overstretched that “community care” has become code for “saving money by dumping the problem on families”. It is parents and spouses who often now look after someone having a psychotic episode, and they say they often cannot get crisis assessment teams even to visit.

In 1997, The Age reported on Keryn Gordon, 35, who was repeatedly sent home from casualty units after suicide attempts without any psychiatric assessment. Shortly before her death, doctors advised her to stop her medication. Despite family protests, she was released into the care of her elderly parents while going through withdrawal. She held her mother at knife-point before grabbing two carving knives and escaping in a car. Some time later she was admitted to hospital, where she apparently suffocated herself.

Says O’Brien, “The biggest problem is that they don’t listen to carers when they ring. But this is not just like nursing someone who is ill; many times we are dealing with horrific problems that most of us are untrained to deal with.”

Roma Drummond’s son has had schizophrenia for 21 years. She says it is crucial that sufferers get medical help early in an episode of psychosis to try to minimise the damage of an attack. Yet patients and families are often told that the person is not yet ill enough to justify hospital admission. She says it’s a Catch-22. Experienced patients know they are becoming unwell and have enough insight to want help, but the psychiatric teams who act as gatekeepers to hospital beds often say if patients have insight they are not sick enough to justify admission.

Yet Professor Peter Doherty, director of psychiatry at the Alfred Hospital, says acute psychiatric beds are always available in Victoria. If a particular region is full to capacity, it refers patients out to services in another area. Doherty believes carers might misinterpret as bed shortage a refusal to hospitalise that is based on a clinical team’s assessment that admission is not appropriate.

In 1995 the Royal Australian and New Zealand College of Psychiatrists called for a moratorium on psychiatric bed closures in Victoria, saying that deinstitutionalisation had gone too far. Today’s president of the college, Dr Jonathan Phillips, says there are still not enough beds.

Phillips says lack of community housing is another major problem. “Where do people live who are deinstitutionalised? Most unfortunately, many will be living in sub-standard boarding houses, others will be living on park benches and others will be in jails.”

Up to 2 per cent of Australians will suffer a psychotic disorder, most commonly schizophrenia. John Farhall, senior lecturer in LaTrobe University’s school of psychological science, has researched Victoria’s switch to community care. Preliminary findings from his joint research with Monash and Melbourne Universities show that the vast majority of those released from long-term hospitalisation into community care units have done well. ” I am absolutely convinced that we have a better system than we used to have,” Farhall says. “But … there’s never been enough money to meet the reasonable needs of people with psychiatric illness, so both before and after deinstitutional-isation there were people who are underserviced.”

Isabell Collins says concentration on only the most basic needs can have tragic consequences. “A young man suicided and I was asked by his parents to look at his file to see if there was anything that indicated that the system had contributed to his death. He was a university student who developed paranoid schizophrenia. He was treatment-resistant; he didn’t respond well to the drugs. As a consequence of the illness he had to stop studying for his degree, he lost his girlfriend and his friends, he became homeless and he couldn’t get a job.

“There was not one single sentence in the whole of his file that would indicate that any member of the clinical team looked at the impact on his life of having this mental illness. When he came into hospital suicidal, the care plan was `Contain, medicate, allow to ventilate (talk about his anxieties)’. Collins says the man was allowed leave from hospital, despite his mother warning that he was suicidal. He walked in front of a tram.

Still, there are people receiving help now who did not before. For psychiatric nurse Graham Doidge, who until recently managed a homeless outreach service in the inner city, community care meant the freedom to conduct his consultations in alleyways, parks and the back seats of cars. His team looked after “Ian”, who was living in a city garden. They left appointment notes in a cup under his favorite park bench and gave him his medication injections in the toilet block. Eventually he began to trust them and they coaxed him into moving to a nearby rooming house.

Letting people out of custodial care is only half the answer. Accepting them into the community might take longer. The Reverend Marie Macdonald, a Uniting Church minister who works with residents of rooming and boarding houses in Kew and Hawthorn, tells of an attempt by a young man with serious mental illness to share one of life’s simple pleasures. “Victor loves cappuccinos. One pension day I saw him mid-morning, dressed in his fineries and on his way down to a local coffee shop to buy `a cappuccino, a coffee scroll and a packet of fags’. He looked really pleased with himself.”

She was surprised to see him again soon afterwards. The cafe owner had told him to come back later, when there were no other customers.

Not all the walls have come tumbling down.

Finding happiness in adjusting to everyday life

PSYCHIATRIC social worker Robyn Humphries had never seen patients like some of those she met on her first day as manager of a service for newly de-institutionalised people. “They were feral,” she says now. “Their appearance, their gait, their grooming – or rather lack of – no eye contact, no verbal communication except for a grunt, didn’t relate to each other at all. Pacing, shouting, wandering; some were defecating inappropriately. I was shocked. I can remember thinking, ‘What have I done?’.”
Four years, a new environment and a change of medication later, most of the former patients have changed for the better, some dramatically. Many of the people she met that first day have “graduated” from the community care unit that Humphries runs into more independent accommodation.

A big factor in their improvement was new anti-psychotic medication. They have also responded well to their new homes. They left large hospitals such as Larundel and Mont Park for the Northern Community Care Unit – small houses and units on a large green block in Preston. The 20 patients have 24-hour supervision by 23 staff. The aim is to stabilise their medical conditions and teach them the skills to live more independently.

“You can see the change in people here,” Humphries says. “They like being more normal, going to the shops and out to the cinema or the bank. The old way was a very artificial way of living.”

“Alex” used to be totally directed by staff because he had little control over his behavior. He had poor hygiene, smoked everything from teabags to rolled-up newspapers and vomited often because he ate out of rubbish bins.

Now he is relaxed and cheerful. He plays the piano accordion, can make eye contact and talk briefly about what he has been doing. After a year-long slow-eating program, he can put down his fork between mouthfuls and control his urge to shovel food. Humphries suspects that in a big, noisy setting he might have grabbed his food quickly to stop others snatching it.

Patients can now choose what to wear and eat and do. And their families look at them differently. “You don’t see them any longer as a mad person in a mad place,” Humphries says.

First published in The Age.

The truth about children of gays

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IT’S the sort of thing that happens in fiction: a young woman lies heavily pregnant in a hospital bed, ill from the stress of a police investigation relating to her child’s conception.

Canadian novelist Margaret Atwood wrote about such scenarios in her chilling book The Handmaid’s Tale. She created a futuristic America in which a fundamentalist state regulated how and with whom women bred children; police prosecuted – persecuted? – any who dared to breach the rules.

Such a vision seemed far removed from Melbourne – until this week. A pregnant mother who is a police officer has required hospital treatment for a stress-related illness after a police inquiry into the way she and a gay colleague managed to conceive an IVF child.

It has been alleged that the two falsified a document to get into an IVF program, a claim the couple denies. They face the possibility of criminal charges and the loss of their police careers. Gays are not licensed to breed – not in ways that require medical assistance, anyway.

The reasons for that are a matter of common sense, aren’t they? Bans on gay access to IVF arise largely out of concern for the children who might result from it. Everyone knows that children need parents of both sexes if they are to be sexually normal. Everyone knows that children in gay families are more vulnerable to all sorts of emotional and social problems. How could you justify visiting that upon a child?

But here’s the rub: it seems that 20 years of studies by social researchers comparing the children of gay parents with the offspring of heterosexuals have failed to discover any significant negative difference between the two.

In 1992, American researcher Charlotte Patterson analysed the findings of 12 studies that had assessed more than 300 children of gay or lesbian parents, often comparing them with the children of divorced heterosexual women. They found that adult children of gay people were no more likely to be gay than were the children of heterosexual parents.

They did not differ from “normal” children in terms of gender identity (how good they felt about being male or female) or gender role behavior (lesbians’ children played just as often with “feminine” toys such as dolls, and as adults were just as
likely as others to choose jobs that fitted with conventional sex roles).

The studies found no differences in terms of intelligence, self-concept, emotional problems and development of moral judgment.

The significant differences they did find were nothing you could base a discriminatory law upon. One study reported that lesbians’ children saw themselves as more lovable and were rated by others as more affectionate and more protective towards younger children.

Another reported that lesbian mothers were more concerned than heterosexual mothers that their children have good relationships with adult men; a third, that children of lesbians saw more of their fathers than the children of heterosexual divorced women.

No evidence here of ideological brainwashing against heterosexuality. Maybe that’s because gay parents know how painful and destructive it is to be pressured to deny your true self. Maybe they don’t want that for their own children, gay or straight.

If a child’s healthy development depends not on family structure, but on the quality of family relationships, what precisely are we protecting potential children from when we ban gays from using technology to conceive them? Our own prejudices?

A 1995 survey of 732 Australian lesbians found that 20 per cent already had children and another 14.5 per cent planned to have children within five years. Using conventional means to conceive must be abhorrent to them, and exposes them to the health risks of unsafe sex with people who are not their chosen partners. Under current laws, illicit artificial insemination attracts a penalty of up to four years’ jail.

If it cannot be shown that gay families are detrimental for children, then the only remaining justification for refusing them access to artificial insemination is based on the religious notion that homosexual activity is ungodly and somehow against “the natural order”.

“The natural order” tends to be a euphemism for “the status quo”. It was called upon often by those who tried to keep women out of voting booths, universities and pulpits. It’s a concept that has had its day.

First published in The Age.

Life on the other side of the wall

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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.

The painful secrets of East Timor’s women

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The first shock came when her husband fled. He feared the Indonesian troops invading East Timor in 1975 and jumped on to a ship and out of her life. “Maria”, as she wants to be known, struggled to keep going with her four children in the war-torn city of Dili. She cooked food and sent the children out into the streets to try to sell it.

She never grew used to the soldiers. They knew there was no man in the house. They would come by at four in the morning, battering on her door, demanding to search for freedom fighters or ammunition. They never found either but took whatever they fancied – watches, suitcases, clothes. Then came the night that three of them fancied something she could not let them take: her daughters, aged 10 and 11.

Maria tells the story sitting under a shady plane tree in Melbourne, her fingers twisting a handkerchief, her eyes red with tears she refuses to shed. She had sent the girls to hide with a neighbor. She had heard stories about mass rapes in the villages, about groups of women forced into long-term sexual slavery. “Because they couldn’t find my daughters they were very angry,” she says, through an interpreter.

“All along they had just wanted to come into my house to demonstrate how powerful they were. When they couldn’t get my daughters, they forced me instead.” She told no one of the pack rape. Even the child born of it, who is now a teenager, does not know.

Many of Timor’s women carry terrible secrets. A new report published by the East Timor Human Rights Centre says that Indonesian authorities, and in particular the military, have systematically violated the human rights of Timorese women. They have been forcibly sterilised, coerced into accepting contraception and raped so routinely that some Timorese families teach their girls at home because they fear they will be attacked on the way to school. Others lose access to education because their parents fear that school “vaccinations” might be the controversial injectable contraceptive, Depo Provera.

The report, From One Day to Another: Violations of Women’s Reproductive and Sexual Rights in East Timor, was written by Miranda Sissons, an Australian now based at the Yale Centre for International Studies in America. This report and another by Dr George Aditjondro, a lecturer at NSW’s University of Newcastle, were prepared for the United Nations Special Rapporteur on Violence Against Women. The Special Rapporteur is due to report to the Commission on Human Rights in Geneva next May on the issue of state-sponsored violence against women.

Sissons’ report concentrates on alleged abuses by the Indonesian national family planning program. In the 1980s this included the forcible injection of schoolgirls with Depo Provera and the covert sterilisation of women who were admitted to hospital for other procedures such as caesarean delivery or appendectomy. There were also stories of babies aborted or killed after birth by hospital staff. Aditjondro documents rape, sexual slavery and prostitution.
Sissons, who visited East Timor as part of her research, found that women had been denied medical treatment in life-threatening circumstances. Some had died after being refused care while in labor. Sissons reports that soldiers round women up for sterilisation or contraceptive “safaris”, and that no follow-up care is readily available for women who later have trouble with the IUDs or injectable hormones given to them.
Sissons says that Indonesian women in other provinces are sometimes treated brutally in relation to population control measures but abuses have been more widespread and extreme in Timor because of its isolation; Indonesian authorities refuse to allow
human rights monitors into the island.

The abuses have convinced many Timorese that the family planning program is being used to bring about the genocide of their people. How, they ask, can Indonesia justify forcing contraception on a nation that lost a third of its population following the 1975 invasion? “There is no good answer to that,” Sissons says. “There’s a very strong belief that this is about ethnic dilution, and it’s not totally unjustified.”

The fear is so great that many now refuse to use the Indonesian-run health services. Sissons says that, partly as a result of this informal boycotting, the death rate in East Timor is the worst in South-East Asia and its infant mortality outstrips even Rwanda’s.

Many have suffered like “Maria”. Ordinary Timorese women, officials and refugees told Sissons that “Rape and other kinds of sexual violence have become embedded in Timor in the last 20 years.”

Dr Aditjondro says that rape is the most common form of torture perpetrated against East Timorese women and is used as a political weapon to subdue, punish, humiliate and “dilute” the local population. It is mostly inflicted on women living in poor, isolated communities, but Aditjondro says that many female relatives of freedom fighters have been raped by soldiers as a form of revenge, including a sister of resistance leader Xanana Gusmao. Another kind of abuse is “forced marriage”, in which a soldier appropriates a young woman to live with him for the duration of his tour of duty. The woman and any children of the union are abandoned when he returns home. Other women are used as “sex slaves”, confined to a house where they must service the local troops.

“Rape and prostitution are linked,” Aditjondro says. “The victims of rape often become very marginalised because they are in a traditional Catholic society where virginity before marriage is highly prized. Often the shame of the woman herself is enough to drive her into prostitution. So the military gets to continuously benefit from its sexual abuse.”

Timor is also experiencing a phenomenon similar to Australia’s “stolen generation” of Aboriginal children farmed out to whites. Aditjondro says that the orphaned children of freedom fighters are “stolen” by the military to be raised in Indonesia, where they grow up learning nothing of their Timorese heritage.

“Maria” has kept her mixed-race child. “It’s not her fault,” she says. “She wasn’t the one who created all this pain. I can’t reject her. She still is my daughter as well. I feel that, in the end, life is given by God.”

It was a struggle for her to reach this point. After the rape, and when she discovered she was pregnant, she wanted to kill herself. “But then I worried about my other children,” she says helplessly. “Who would look after them?” As it turned out, even she could not look after all of them. One son was killed by Indonesian troops who opened fire on the group of friends he was talking to in the street. It was then that she decided the family should come to Australia. She has tried to put the past behind her.

She is not altogether successful. She walks heavily, as if carrying a great burden, and seems to have no plans for her own life other than to endure for the sake of her children. Here is the only question with which she cannot cope: Since the rape, has she been able to feel happiness? Her iron control breaks. She buries her face in her hands and weeps, silently.

First published in The Age.