Monthly Archives: June 1998

Long days and lonely nights for Fiachra

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When Gina McAdam was pregnant with her first child, 11 years ago, she had a feeling something was wrong; her baby was not moving. Her doctors scoffed at her. “You midwives,” they said, “you’re all the same. You know what can happen so you worry too much.”

But it turned out Gina McAdam had toxaemia, which can deprive the unborn child of oxygen. Her little boy Fiachra (pronounced Feekra), was born six weeks early. He was small, cried a lot and did not put on weight as he should.

He was 10 months old before a CAT scan revealed he had severe disabilities, including spastic quadriplegia, epilepsy and visual cortical blindness (his eyes can see, but his brain cannot process the images normally). What he registers visually is unknown because, like most children with this problem, he is also unable to speak. He has an intelligent mind trapped inside a helpless body.

Gina McAdam is angry, but she does not want pity. She wants people to understand the difficulties of life with a disabled child because, she says, many families do not have the aids and services they need. She says the level of help in some areas has fallen in the past decade, and she is alarmed by recent revelations that the Spastic Society of Victoria faces big cutbacks due to a $1 million financial black hole. Services for children with spasticity are already not what they should be, she says.

She is glad her son was born 10 years ago and not today. “When Fiachra started in early intervention (physical therapy) at 14 months of age, we were getting 120 hours a year of therapy time – and more like 220, by the time you counted all the extras, like psychological services. Now, children in early intervention are down to 40 hours a year. (Forty hours) is a waste of money. It will do nothing for the children.”

Spending a day with Fiachra explains why. Every milestone he has achieved – gaining some control over his right arm, standing with the aid of calipers – has been won at the expense of hours of one-on-one help; every small thing he does requires the help of an able-bodied person. But what his family and therapists have contributed in time and faith, Fiachra has matched with determination.

Take drawing. He must be positioned carefully at a table and force his weaker hand to hold on to a small post, to keep him steady. He sighs with impatience. He grips the special felt pen the wrong way and must struggle to release it; he throws his head back with the effort, his mother gently stroking the back of his hand to try to help it relax. The fruit of his labors: half a dozen random lines.

Fiachra attends a mainstream school, with the support of two part-time intergration aids. “He works so hard at school and he always wants to do more,” says McAdam. “He’s really aware of his disability and he gets very frustrated with it. My heart goes out to him. He’s a great little man.”

She must carry her little man like a little baby. Fiachra’s head lolls on to his chest, and he has extremely limited control of his body. He cannot feed, bath or toilet himself; although he can cry and laugh – he has a grin like a split watermelon – his only other verbal communication is an indeterminate “Nnnnnh”.

When Fiachra is home, his care takes up most of McAdam’s day and a fair proportion of her night. By 10am he has been fed and bathed, and his mother hauls him into his big wheelchair and fastens him in. She feeds him pieces of orange as she talks, using one hand to hold a towel under his chin and the other to place segments of fruit in his mouth for him to bite. Sometimes he is successful, sometimes his tongue gets in the way. “Try again,” she tells him patiently. She is usually awake by 5am, because that’s when Fiachra wakes. She is trying to encourage him to stay in bed listening to music until 6am. On a good night, Fiachra wakes and needs attention about four times; last night he cried almost non-stop. It meant a bad night for the whole family, including father Brian and Fiachra’s younger sisters, Clare, 7, and Ciara, 5.

It’s hard to know what the problem is, McAdam says. Sometimes it’s his asthma; sometimes his body goes into spasm and he can’t get out of it alone. Maybe he just misses the attention he has in daylight hours. But his parents cannot accept the sleep clinic’s advice to respond to him only twice, then let him cry himself to sleep. “He can control-cry all night. He ends up soaked in perspiration; his hair is wet, his pillow. I just don’t feel comfortable with leaving him like that.”

And McAdam worries they might end up ignoring an urgent need. Fiachra has seizures that tend to come at night. “He could die if we didn’t find him,” McAdam says. “He fits and fits and fits; he doesn’t stop without medical intervention.”

But this morning there is another day to try to fill with activities for the children. It is a curriculum day at school, so McAdam has all three home with her. She has shadows under her eyes, but Fiachra has begun to grizzle because he is bored.

She wheels him into a small back room that holds his computer. It takes 15 minutes to set him up. “Can you move your beautiful arm for me, Mr McAdam?” says his mother, helping him bend it. She holds it so that when he begins a purposeful movement, she can help him complete it and tap the big green control button.

As he can learn about the world only through sound, his computer has been programmed to read information to him. He also uses it to “write” stories. His last story was of Fiachra, the lonely dragon.

Another computer that he uses to “talk” works in a similar way. It reads out options to him, and he slides his arm to the touch screen when it announces the choice he wants. It is a painfully slow process.

But still it has transformed his life, relieving much of his frustration at not being able to express himself. His hand goes into spasm as he tries desperately to find out about the reporter who has been quizzing Mum.
While his mother explains the funding problems, Fiachra chooses: “It’s not fair.” And then he struggles with the computer’s limited vocabulary to make social chit-chat, asking whether his favorite leisure time activity is shared: “Woman, do she go to restaurant?”

It has cost the McAdams’ $20,000 for Fiachra’s technology. They could afford it only because a business friend of Brian’s organised a funddraising drive for them. The McAdams have been unable to get funding from the Education Department, and the government program that provides funding for adults’ communication aids will not help anyone under 18.

The buck-passing maddens Gina McAdam. “Australia spends less per capita on early intervention than some Third World countries,” she says. “All children, able-bodied or not, should have equal opportunities. It’s wrong that your potential should depend on whether or not your parents can pay. For these children not to have computers and communication output devices is like not giving other children pen and paper.”
Her hopes for Fiachra’s future are the same as those she holds for his sisters: she wants to see them all at university.

An hour at his communication aid leaves Fiachra exhausted. McAdam packs away the machinery and the toys the two girls have been playing with. They are an independent pair; they have to be. “Clare toilet-trained Ciara,” McAdam says. “They shouldn’t have to be so good. I try not to ask too much of them.”

McAdam heaves a tired Fiachra from his chair to her lap; he spends a lot of time there, because the chair becomes uncomfortable. But her back is starting to feel the strain of lifting him in and out of chairs, on and off toilets and beds, so this is his first such cuddle today.

Does she get any time to herself? Well, at one point she did start some weightlifting classes. “I need to be strong,” she says. In every way.

CUTS TO CARE

The chief executive officer of the Spastic Society of Victoria, Vici Funnell, confirms that the society has had to cut back its early intervention program, despite research that highlights its significant benefits.

The problem is not government funding cuts; in fact, she says, State Government funding to the society has increased over the past three years. The difficulty is that the number of children in need of help has increased.

There are two reasons for this: the definition of children eligible for services has widened to include more recently recognised conditions such as autism and attention deficit disorder, and the number of babies surviving into childhood despite severe cerebral palsy has increased.

Funnell says the society regrets that it can no longer offer an integrated holistic therapy program to as many children or as intensively as it could in the past. But the society has been running at a deficit in order to prop up such services and it can not continue to do so. The $1.4 million spent on early intervention will drop next year to $600,000.

A spokeswoman for the Minister for Community Services, Denis Napthine, says young people attending school are able to apply for communication aids through the education department. Napthine’s department funds aids for children not at school.

She says both departments are committed to working out a more consistent approach to this issue and any cases in which children have not received help should be referred to the department.

First published in The Age.

JOAN KIRNER ROCKS ON

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Joan Kirner remembers the precise moment she decided to be Premier. John Cain had resigned; she had the numbers. And Steve Crabb phoned her to explain at length why he would make a much better Premier than her and how she should stand aside for him.

Kirner listened to all this for half an hour before realising she was indulging in the typical female self-doubt that she had always urged other women to avoid. “I thought, ‘My God, why am I listening to this?’

“For years, I had been saying to other women, ‘When you get the opportunity, grasp it!’, and here I was doing the classic female bit, instead of thinking about how I could do this well.”
She snapped out of it and the rest is history. Her parliamentary career is now history too, but her political life, as she is quick to point out, remains alive and kicking.

On Saturday Kirner turned 60, and yesterday she was singing (badly) a version of I Love Rock’n’Roll in the Regent Theatre ballroom at a $60-a-head birthday bash to raise money for Emily’s List. It seems Kirner will do anything to promote Emily’s List, the support organisation she helped set up in 1996, aimed at getting “the right kind” of women into all of our parliaments. And yesterday that meant borrowing a wharfie’s black leather jacket and reprising the Joan Jett rock anthem she first performed on ABC television’s The Late Show five years ago.

So, where is Joan Kirner at 60? Geographically, still living in the same pretty weatherboard cottage in Williamstown with husband Ron that they shared through all the political tumult. Personally, she is now tougher and more savvy than when she started her public life 30 or so years ago. That’s why Emily’s List, which was originally conceived as an internal network for Labor women, is now an independent organisation, completely autonomous from the Labor Party machine.

Kirner is matter-of-fact about the organisation’s differences with the party that it was established to help. “The party was concerned about two things: One, that we would control our own money and have our own membership and committee, and two, that we insisted on being pro-choice … The network that they were prepared to tolerate didn’t have clear feminist principles and didn’t have control of its own destiny.” In other words, there would have been no point in running it.

As it is, the organisation’s money, mentoring and moral support to selected women Labor candidates has had remarkable early success. It has endorsed 37 candidates and helped 11 new women get into Parliaments across the country. (Emily stands for “Early Money is Like Yeast – it makes the dough rise”.)

Recently, the list matched up Frances Bedford, who won her South Australian seat of Florey with a 14 per cent swing, as mentor for Anne Stuart in Indooroopilly in Queensland, who needed 14 per cent to win. “We do what the women’s movement has done for years, and that is share our experience in a way that sharpens up people’s strategies and makes them feel they can take the next step.”

Kirner says she had a sad week leading up to her birthday. There was the rise of One Nation in the Queensland election and the sudden death of a dear friend and colleague who had fought alongside Kirner to improve the state education system. There are times when she feels that much of what she tried to work for has been undermined.

She has no time for the Prime Minister, John Howard, particularly since he allowed universities to reserve places for fee-paying students.

And she wonders to what extent the policies of the Premier, Jeff Kennett, have fuelled the rise in support for Pauline Hanson: “His removal of the public’s say in Victoria, his cuts to advocacy programs and his devaluing – in terms of resources and respect – of the public health and education systems has contributed to the alienation, particularly in the country areas, that is creating One Nation.”

Kirner still works full-time, fighting for what she believes in. The smart working-class kid who studied her way into university at 16 has never forgotten where she came from, or the people who deserve a fair go. She was on the wharves linking arms in the front line of the union picket during the recent dispute.

She has few regrets – the main one being her lousy timing for ascension to Premier, when she had to battle recession, the State Bank disaster and Pyramid building society collapse.

Asked what she knows at 60 that she wishes she had known at 30, she laughs and asks if she can make it 20: “The contraceptive pill would be the first one, so that I could make a decision about when to have children.

Also, she says, “the importance of superannuation for women, because of course when I got married, I had to resign from the permanent teaching force and lost my superannuation”. (She was not in Parliament long enough to qualify for a pension and must supplement her income now with paid work, such as speeches).

“And the importance of feminism. I knew as a young woman the importance of making my own decisions, because I had grown up with that in my family, but I wish I had known more about the restrictive nature of male power structures and how to operate on them.”

MEMORABLE MOMENTS

* The funniest: Proving her “manhood” as Conservation Minister in a helicopter viewing bushfires, only to land at Bogong and meet a local who was dressed in full evening dress: tails, dicky front, bow tie. “Are you wearing that gear because wool is a good protection in a fire?” she inquired. “No, Joan,” he said. “I’ve never met a bloody minister before and I thought I should dress up for it.”

* The most embarrassing: Opening a spa at Hepburn Springs – she agreed to don bathers and step into the pool, only to discover, with a splash, that no steps awaited her under the water. That night a TV station played the shot over and over: in and out, in and out. Cabinet was in stitches the next morning.

* The saddest: “When John Cain resigned. He stood up and put his hand on my hand (and told me). I burst into tears in Caucus.”

* The hardest: “Selling the State Bank, without a doubt; the bank that my father had one of the first bankbooks for.”

* The most exciting: “Working with Paul Keating. He was a visionary. But I wish I could have persuaded him that to implement a vision you have to take people with you; you can’t just tell them what’s good for them. And you certainly can’t tell them regularly that ‘This is a beautiful set of statistics’ when their real lives weren’t reflected in those statistics.”

* The most satisfying: “Getting kids with disabilities into normal schools.”

First published in The Age.

Not-so private lives

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When my son was about seven, he came to me with one of the big questions. “Mum, you know when I was born?”

“Mmmm?”

“Were my eyes open or closed?”

“Closed, darling.”

The fact that Mummy’s mysteries had remained mysterious was a great relief to him. “Thank goodness for that,” he said, and went back to his Lego pirates.

The joke is that I was only able to answer his question because I had watched his birth in a huge labor-ward mirror. Some people like to watch; some people are appalled at the thought. And some invite a high-tech audience of thousands to observe their most intimate moments.

On Tuesday, a 40-year-old American code-named “Elizabeth” gave birth to what was touted as the world’s first Internet baby (though this title was disputed by another mother, who claimed she had labored live on the Net in February to an audience of 150 or so). At least 50,000 people tried to log on to Elizabeth’s birth website, overwhelming a system that could only cater for 5000 at a time.

The performance itself, despite frenzied pre-publicity, was a tame affair. The cameras mostly filmed from over the mother’s shoulder; when they finally did swing around, nurses’ backs obscured the site of all the attention. And we already knew it was going to be a boy (Sean, 3.4 kilos, blue eyes and black hair).

But even for confessional, bare-all America, the live mass transmission was a first, triggering a new round of the “Is nothing sacred?” debate. On the Internet, apparently not.

Exhibitionism has become so rife in cyberspace that the last annual meeting of the American Psychological Association debated whether to stop regarding exhibitionists as having a pathological condition. It was argued that it becomes increasingly difficult to define as abnormal something that so many apparently normal people do.

Les Posen, a Melbourne psychologist who attended the conference, says, “One of the interesting things that came out is the number of couples who are putting their sex on the web for anyone to look at or selling it as amateur videos. What does this mean for couples and their families, and for their consumers, that this is real couples having real sex, as opposed to the usual pornography that we know is faked up?”
Another clinical psychologist, Dr Janet Hall, knows of couples who use the Net for long-distance orgies. “It’s more hygienic,” she explains. The couples call it “camming”: they attach a video camera to their computer and transmit images of themselves having sex live to other couples, who return the favor.

Hall says the Internet’s anonymity makes it a treasure trove for the voyeur, the person who becomes intensely sexually aroused by being able to observe others without becoming involved themselves. She says Elizabeth’s birth scene would have attracted some who hoped for explicit shots of female genitalia.

Filming childbirth is, in itself, nothing new. The manager of the family birthing centre at the Royal Women’s hospital, Julie Lawson, says the centre has filmed several births for educational purposes. The women are offered the chance to edit out any shots they feel uncomfortable about and may withdraw at any time.

The videos are shown to people involved in the process of birth – those about to experience it, or those who attend it – so there is a context for the viewing, and a chance to debrief anyone who has a strong emotional response to it. None of this was the case with the Internet transmission.

Personally, Lawson says, she dislikes watching videos because they capture so little of what birth is really like. “I have been there at the real thing and it’s just not the same. I think you miss the real emotion and the sense of being involved with the people on a personal basis.”

There are some couples who don’t understand that their powerful, exhilarating, subjective experience of birth cannot be captured for the complete outsider. The dreaded family slide night looks inviting compared with the dinner parties in which today’s radiant new parents insist that their appalled guests view the amateur birth video between main course and dessert.
Senior lecturer in anthropology at Melbourne University, Dr Roger Just, says many people hold a romantic delusion that in more “traditional” and “natural” cultures, people are much less inhibited about such things than hung-up Westerners have been.

“In fact, the majority of societies are probably a great deal more concerned with privacy and with taboos, and with hiding or obscuring many of the bodily functions and activities, than we are,” says Just. He says Western societies are the only ones in which men are allowed to be present at childbirth, for example.

He says that, personally, he doesn’t understand why people feel driven to parade the most intimate aspects of their lives in the mass media. “There are these American TV shows where people are invited on to tell you about all these really private things. You’d think it would be extremely embarrassing and yet they’re queueing up to exhibit themselves to an audience.

“Do we feel so insecure that the only way that we can make our lives real to ourselves is to make other people watch them? … People really seem to believe that their private experiences ought to be validated by public approval or admiration.”

Perhaps they are assuming that if something is natural and good, there is no need to “hide” it; privacy has become confused with shame and repression. But Just points out that in all cultures, even “natural” activities are elaborated in complex ways; eating food is natural, but it has become bound up with more general customs such as the business lunch or the courting couple’s romantic dinner. Sex and childbirth are natural and good, and it is “normal” to keep them private.

First published in The Age.