Monthly Archives: April 2002

The blind prophet who fell victim to his own predictions

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Martin Stewart warned everybody that a catastrophe like this was bound to happen. He didn’t anticipate that it would happen to him.

Mr Stewart, 39, has been blind since birth, but he had lived a normal life. He has a wife, Katrina, who is also blind, two small children and a job that he used to travel to every day by train.

“Public transport is critical for blind and vision-impaired people,” he said. But he had always known of its dangers. For years he lobbied the State Government and the railways on the risks to blind people of injury or death on a system that no longer had guards or platform staff.

Then, in February, Mr Stewart stepped into what he thought was an open carriage doorway and fell into the space between carriages and on to the tracks at Richmond station.

Despite the desperate attempts of an onlooker to flag down the driver, the train took off and dragged Mr Stewart 200 metres along the tracks. The train tore off his lower right leg, his right arm and the top of his left ear. It fractured his cheekbone and ribs and left him with painful friction burns down the front of his body.

It could have been worse, he said. If the first person to reach him hadn’t been trained in first aid and staunched the massive bleeding, he’d be dead now.

And he’s grateful he hasn’t got brain or spinal damage. “If you want to believe in miracles, just look at me,” he said. “It’s a million-to-one thing that I’ve come out alive.”

He is determined to be positive – “the more determined you are, the more capacity you end up retaining” – but it has been a struggle. “When I woke up in intensive care, I thought, `There are people worse off than me. Don’t complain.’ Then I thought, `You’re close to the margin here. Where are the worse-off people?’ ” And he laughed, his humour genuine, belly-shaking and black.

But there are few laughs. He has wept a lot, mourning the loss of his limbs. He can no longer read Braille because he lost his dominant right hand. He hopes that an artificial leg will one day allow him to walk but for now he must crawl up 18 steps to get to the bedroom of his rented two-storey townhouse. “Keeps me fit,” he said.

Katrina has had to drop from full-time work to three days a week because he can’t help with the children or the housework; he can no longer hang out the washing or make up formula for baby Karralee, seven months. Their son Adrian, who wants to kick the train that took daddy’s arm and leg, is a feisty three-year-old.

Mr Stewart is not seeking sympathy but he is determined to do everything he can to ensure he is the last blind person to suffer like this. In the 1980s he worked with an advocacy group, People in Equality, Not Institutions, that unsuccessfully fought the loss of train guards and conductors because of the safety implications for people with disabilities.

They took cases to the Equal Opportunity Board and the Supreme Court and won, he said.

“But the government legislated around us”.

He said governments of both political persuasions hurt the public, and particularly people with disabilities, when they cut costs and staff. “If you’re running a swimming pool, there are lots of safety requirements, including that you’ve got to have people watching, but when it comes to trains you run it without having anyone watching on the platform,” he said.

Blind people also depended on loudspeaker train announcements, but these were often unclear or not made at all. In the months before his accident he rang the staff of Richmond station to tell them that announcements were crucial.

In the moments before he fell, Mr Stewart said he had been trying to find the train door and listen for another passenger who might be able to tell him if this was his train, as no announcement had been made.

Maryanne Diamond, executive officer of Blind Citizens Australia, said the association got about a call a week from a blind person who had had an accident on the transport system. Most were not reported to authorities because they did not involve injury, she said, but some blind people now refused to travel by train because they felt unsafe on stations.

She wanted all stations fitted with tactile ground surface indicators – long narrow grooves that indicate direction and lines of raised dots that indicate hazard. “It helps blind people walk in a straight line and prevents them walking off the platform,” she said.

A spokeswoman for Connex trains could not comment on Mr Stewart’s case as it was being investigated by the Transport Accident Commission. She said the company knew of two deaths involving people with wheelchairs and seven other cases of minor injury involving people with disabilities. One involved a blind man and his guide dog who walked off the end of a platform. She said Connex was working with researchers and disability groups to improve the system.

A government spokesman said yesterday: “Obviously this is a terrible tragedy. The government has already raised the issue with Connex and is investigating whether anything can be done to make sure this sort of thing doesn’t happen in the future.

“Government representatives will also be meeting friends of Mr Stewart next week to discuss the issue further.”

Mr Stewart faces months of rehabilitation. His wages are still being paid by his employer, the Royal Victorian Institute for the Blind, where he works as an industrial relations officer. The institute has also set up an appeal for the Stewart family.

“Blind people have been traumatised right across the country by this accident,” Mr Stewart said. “What in God’s name has to happen? Are our lives dispensable?”

First published in The Age.

The age-old quandary

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AGED CARE
You are 75. You break a hip in a fall and need surgery. While in hospital, you pick up a post-operative wound infection and develop pneumonia. Your forgetfulness intensifies into more serious dementia symptoms as you struggle to cope with the twin assaults of illness and a strange environment. You are now frail and will need weeks or months of care and rehabilitation; perhaps you will never go home again.

The hospital is not set up for convalescents and wants your bed for more urgent patients. Who will look after you, and how will it be paid for?

It is the kind of question that is central not just to your future but to Australia’s, according to Treasurer Peter Costello. This week he warned cabinet of a $50 billion-a-year budget blow-out in health, aged care and income-support programs within a generation unless the sharply rising costs of a greying population are curbed. A visionary attempt to grapple with the future – or an attempt to soften up the public for cuts to Medicare and social welfare?

“This analysis is scaremongering designed to frighten people into accepting public sector budget cuts when, in reality, they are probably not going to be required,” says Stephen Duckett, professor of health policy at La Trobe University.

But an administrator in a private hospital disagrees about the need for concern about the community’s ability to pay for the needs of older people. “Future horror scenario?” she says. “The system has trouble coping with the elderly now.”

In the next 40 years, the number of Australians aged over 65 will rise from 2.4 million to 6.2 million, with the proportion of older people doubling from 12 to 25 per cent. Towards the middle of next century, after the baby boomers have retired, there might be only 2.5 people of working age for every person over 65, compared to more than five people currently.

According to a report by Access Economics to the Federal Government, the number of workers and the level of income tax revenue is predicted to slow down from now; pension outlays will increase from 2010; health spending will rise from 2020; and aged-care demands will increase from 2030.

The figures sound daunting, and some researchers are warning about the necessity to budget for the needs of the elderly. Other analysts, however, say the outcome is unlikely to be dire, with many comparable countries already coping well with higher levels of older people. “Australia in 20 or 30 years’ time is going to be like France is now,” Duckett says. “We will be older, but we will be roughly the same as several European countries are now. These European countries aren’t bankrupt, so what makes us think that we’re going to be bankrupt?”

The current banner of the doom-and-gloom brigade is a landmark report due to be released by the government with next month’s federal budget. The Inter-generational Report by Treasury’s Retirement Incomes Modelling Unit is the first official government study of the future cost of current policies, and it predicts that advances in medical science that allow people to live longer will place a massive burden on taxpayers, mostly due to expensive new drugs and medical technology. The report is designed to trigger a public debate on the sustainability of existing health and aged-care programs.

News of the report came as the Myer Foundation announced a million-dollar project to develop a vision for aged care in Australia, and as the United Nations ended its world assembly on ageing in Madrid.

Greying is a global issue, says Professor Gary Andrews, of Adelaide’s Centre for Ageing Studies, who attended the assembly. He says developed nations face a significant increase in the very old (those aged 80-90), but ageing is also relevant to the developing world. “Already in a country like China you have more than 100 million people aged 60 and over,” he says.

While the details of the Treasury report are still under wraps, others have previously tried to estimate what ageing will cost Australia. Aged-care spending will more than double in real terms from 1997 to 2031, from $5.8 billion to $14.3 billion, warned a staff research paper by the Productivity Commission in October, 2000. But Australia will probably be richer and more able to afford it; even with relatively conservative estimates of gross domestic product, the report said, “spending grows by only about 25 per cent when expressed as a share of GDP”.

The report, Long-Term Aged Care: Expenditure Trends and Projections, predicted that nursing home beds would need to increase from 78,600 to 158,500 in 2031. But, while the aged’s health costs would rise in real terms each year to 2031, they would fall, relative to GDP, until 2021; by 2031, they will be 2.9 per cent of GDP.

Several health economists claim that the view of the elderly as a drain on health resources is wrong. Duckett has researched whether age is a factor in the cost of hospital stays, examining whether 70-year-olds cost more than 55-year-olds with the same condition. He found no systematic variation. “People think they should worry because older people stay longer, but in reality they often have substantially less investigation and interventions than younger people,” he says.

Andrews agrees: “The fact that more people are in their 70s and 80s and 90s has a relatively small impact on total health costs. A lot of research in the past decade (confirms) less than 5 per cent of the increase in health care costs is accounted for by the population ageing.”
Professor Jeff Richardson, of the Centre for Health Program Evaluation at Monash University, says it is not ageing itself that is the problem: “It’s ageing plus new technology.”

But another question raised by the Treasury report is acknowledged by many analysts as a problem: the ever-rising cost of drugs. John Goss, principal economist with the Australian Institute of Health and Welfare in Sydney, says: “The growth for the Pharmaceutical Benefits Scheme has been 9 per cent per year in real terms. If you have growth of 9 per cent, the doubling period is about eight years. It quadruples in 16 years, and it’s eight times (higher) in 24 years. It has huge momentum.”

An unknown factor in the future equation is the health status of the next generation of oldies. Does living longer just mean more years of disability and degeneration, or will increased life expectancy also mean more years of good health?
Duckett believes the latter. “The reason people are living longer is that they are healthier in old age. An 80-year-old in 20 years’ time will be healthier than an 80-year-old today.”

And it has always been the case that people usually chew up the largest amount of health care in the two years before they die, whether this is at 65 or 85, because that is when their health breaks down. “The general view across demographers and health planners is that the need for health care is not based on years from birth but rather is based on years to death,” Duckett says.

There is another, gloomier possibility. People who live longer because of a reduction in one disease might contract another that disables them; if you avoid the coronary at 70, will you face dementia at 72? The Productivity Commission report says advances such as artificial joint replacements and improved treatments for osteoporosis, arthritis and dementia might lessen disability among the aged. But technology might also increase the survival time of people with disabilities, the report says. “Dialysis for renal failure increases survival time, but the aged person receiving such treatment will still typically be unable to perform many tasks
unaided.”

Then again, disability does not necessarily mean institutionalisation. The Productivity Commission estimates that, while about 18 per cent of those over 65 have a profound or severe disability, only 3 per cent of old people are in residential care.

For some people trying to care for the aged now, the question of whether the future poses problems is nonsensical. There is already a national shortage of nursing home and hostel beds, long delays for elective surgery and cancer treatments, and problems with elderly patients acting as “bedblockers” in acute hospitals (too sick to go home, but with nowhere else to go).

“An acute hospital is not a convalescent home for looking after elderly people when they are not acutely ill,” says Denis Hogg, chief executive of Epworth Hospital. “But where do you refer them to for their on-going care?”

He denies that private hospitals cherry-pick to avoid bedblocking – “In our emergency department, 75 per cent of people admitted are over 75” – and he says Epworth has had to set up its own self-funded aged-care coordination team to try to find places for older people who need care following discharge.

“Step-down” care, between a hospital visit and home, is unfunded by private insurance and often unavailable, says Angela Magarry, director of policy for Catholic Health Australia. Like many other organisations, CHA wants aged care and health to be run by one level of government to prevent buckpassing of responsibilities and gaps in the system. CHA has also called for a Medicare “grey card” to be established to protect older people’s right to care.

Denys Correll, national executive director of the Council on the Ageing, agrees that Medicare should be strengthened and says problems such as the blowout in pharmaceutical costs can be managed by price volume agreements between the government and manufacturers.

Goss points out that anxiety over costs tends to ignore benefits: “There’s no need for doom and gloom if any increase in expenditure produces more benefits than costs in terms of older people being healthier, suffering less pain and having a lower chance of dying.”
An extraordinary number of older people are involved in the informal economy through their care of grandchildren, he points out.

“There’s often strong interests behind the position saying that `the world is falling apart’,” says John McCallum, professor of public health at the University of Western Sydney. He is concerned that an atmosphere of pessimism might encourage the belief that more health and aged-care services must be privatised if the government is not to go bust. In his view, “there are serious issues and they do have to be dealt with, but they’re not necessarily going to break the bank or destroy the Australian way of life”.

First published in The Age.

A lot of noise over silence

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Sharon Duchesneau was deeply hurt when her father told her that, if she ever had children, she should check with a geneticist to assess the risk that the baby would be deaf, like her. “I felt put down, like it would be bad if my child was deaf, or it was a negative thing to bring a deaf child into the world,” she says. “I took it personally.”

The personal has now become political. Duchesneau and her female partner, Candy McCullough, who is also deaf, are at the centre of an ethical storm over their decision to conceive children using a deaf sperm donor to increase the chance of the children being deaf. To many hearing people, it sounds like one of those stories that could only come from America, that land of the free and home of the bizarre.

But the chairman of Melbourne IVF, John McBain, says a Victorian deaf couple approached his service three years ago wanting help to conceive a deaf baby. “They didn’t have a fertility problem, they just wanted to maximise the possibility of having a deaf child,” he says. “We couldn’t help them . . . We didn’t know how to increase their chances of that. We were able to take the coward’s approach and say there was nothing we could do.”

To many deaf people, the media debate about Duch-esnau’s choice is offensive because it implies that deaf people are defective. The issue for them is not designer-disability but designer-difference. They do not see themselves as people with a disability but as members of a minority cultural group with its own language (auslan), values and community.

Simon Andersson, a deaf man who is an actuary and secretary of the Victorian Council of Deaf People, says: “I get the feeling that people who object to a deaf couple having a deaf baby are objecting to deaf culture. There’s nothing wrong with being deaf. Deaf is fine. Deaf is OK.”

That is not a new concept to ethicists, who have been debating for some years cases like Duchesneau’s. Several examples of deaf children deliberately conceived through embryo selection have been reported overseas, says bio-ethicist Nicholas Tonti-Filippini. But for the wider hearing community, Duchesneau’s stand is confronting. Is it arrogant for “normal” people to assume their lives must be better than the lives of people who lack hearing or sight or mobility? Or has the rebadging of “disability” as “difference” turned into denial, making Duchesneau’s children victims of what one British columnist called “parental psychosis” and “genetic imperialism”?

The case also throws up new questions about reproductive autonomy in an era where lovemaking can be separated from babymaking. Until now, the fear has been that pre-natal selection would be used to try to create high-achieving, near-perfect children. Now we must ask, does the right to choose include the right to choose disability/difference? Do parents have a responsibility to maximise their child’s potential?
Duchesneau had a 25 per cent chance of bearing a deaf child if she conceived with a hearing donor but a 50 per cent chance if she used a deaf donor. When American sperm banks refused her request, she turned to a deaf friend who had several generations of deafness in his family. Five years ago she gave birth to a deaf daughter, Jehanne, and last November she had a son, Gauvin, who is profoundly deaf in one ear but has some hearing in the other. The two women have decided he will not be fitted with a hearing aid unless he wants it himself when he is older. Their story caused an uproar when published in an American newspaper last week.

Andersson’s wife, Karli, who is also deaf, trained as a counsellor with McCullough at an American university for the deaf. Karli says Duchesneau “seemed a very warm, responsible and caring mother”.

Karli is surprised by the media response. Like Andersson, she believes the problem for deaf people is not lack of hearing but the way it is treated by the mainstream community. “I understand (Duchesneau and McCullough’s) decision, and I think they were discriminated against when they went to sperm banks to ask for a deaf donor,” she says. “What’s the difference between that and a black person asking for a sperm donor that was also black?”

Andersson uses a similar analogy when asked about deafness as disability. He returns to his insistence that deafness is not an innate problem and only becomes difficult because of discrimination, just as “women are discriminated against, but being a woman is fine”.

Tonti-Filippini says Duchesneau’s choice is a logical consequence of allowing prenatal selection. “If an IVF team is prepared to do selection in order to eliminate a child who has some kind of difference like dwarfism, on what principled basis could they reject a parent who wanted to use IVF to have a child who was deaf? Either they say they are governed by choice, or they must admit that the only ethical principle should be a eugenic one, to eliminate genetic abnormalities and difference.”

He says he finds Duches-neau’s decision horrific, but not because it was used by deaf people. “I condemn out of hand the fact that selection is allowed for anybody,” he says.

Julian Savulescu, an ethicist with the Murdoch Children’s Research Institute and professor of ethics at Melbourne University, disagrees with the women’s choice to have a deaf child but supports their right to do so.

“There are two principles that you need to apply here,” he says. “Has the child itself been harmed by what they did? No. If they had had a hearing sperm donor, then some other child would have been born. This child can’t complain that he wished they’d used a hearing donor because then he wouldn’t have been born . . .

“The second principle relates to how we should control or regulate reproduction. I personally believe that it’s better to be hearing than deaf . . . so I think what this couple has done is the wrong thing. I personally think you should try to have a child that’s going to have the best opportunities in life. But the fundamental principle that I think should operate here is one of respect for procreative autonomy, respect for people’s own decision about the kind of children they want to have.”

He says he used to believe deaf couples should not use IVF to make a deaf baby but has now changed his mind. He also thinks that, ultimately, parents should be permitted to choose traits such as intelligence or sex, and he agrees with some disability groups that selection only to eliminate abnormality is discriminatory. “You either allow genetic testing for whatever couples think is a relevant characteristic or you don’t allow anything . . . The downside is that sometimes people will choose in ways that you disagree with. That’s the price you have to pay for freedom.”

Savulescu says ethicist Peter Singer, currently in America, disagrees with him. “I asked him about this. He thinks couples should be prevented from using IVF to do this because he thinks it reduces the amount of wellbeing in the world; the world is better off if the child is better off . . . I think that’s based on an arrogance about knowing what’s best for people.”

Rosemary Robins has taken that principle and extended it to a more extreme scenario for her students in history and philosophy of science at Melbourne University. She asks them to debate the question: “Should a deaf couple be permitted to terminate a hearing child?”

“It’s fascinating what the students make of it,” she says. “Mostly they start out saying, ‘Absolutely no way; you shouldn’t terminate the child, there’s nothing wrong with it’. But then they start to think about why we privilege our (hearing) culture over another culture. We allow abortion for social reasons all the time. I can go and have an abortion just because it’s inconvenient for me now because I don’t have a partner; there I am, terminating a healthy foetus. How is it different?”
Since the 1980s, many members of the deaf community in America and Australia have been galvanised by the idea of deafness as a cultural identity involving pride and self-acceptance rather than a medical disability. They call themselves Deaf, with a capital D, and often reject attempts to turn them into “broken hearing people” with the use of hearing aids or cochlear implants.

Lynn Gillam, a lecturer in health ethics at Melbourne University, has been researching the attitudes of deaf people to the termination of deaf foetuses. They do not condemn it, but are puzzled by it because they feel their lives are happy and fulfilled. She says only a minority of deaf people, usually those born deaf, believe deafness is a valuable part of their identity in the capital-D way. Such attitudes are not restricted to deaf people – she knows a wheelchair-bound person and a blind person who both say they would not want to be cured – but she says that deaf people’s separate language has made the phenomenon stronger in their community.

She is not surprised that Duchesneau and McCullough decided against a hearing aid for Gauvin. “If you have chosen to have a deaf child, you are clearly not going to augment what hearing is there because then you are going back on the decision you have made.”
Savulescu says society tends to overestimate how badly disability affects a person’s life, but that some disability groups try to underestimate its impact. He believes Gauvin should get his hearing aid because he should be given every chance to interact with the hearing world. “I don’t accept this view that you’re either in the deaf culture or the hearing culture. I don’t think you have to exclude other cultural influences to maintain your own culture,” he says.

It is something that Karli and Simon Andersson, who grew up as deaf children with several deaf relatives, are starting to come to grips with. Their 10-month-old baby, Bernhard, can hear.

“Having a hearing baby was a little bit of an issue for me, as we have to work hard to ensure that his hearing culture needs are met,” Karli says. “My husband jokes that he is a special-needs child as he requires things that deaf children don’t, like, for example, music; we bought a Mozart CD for him.

“Still, I love him, and I can’t imagine loving him any differently than a deaf baby. Every child is special in their own way.”

First published in The Age.