NEWS BAD PRACTICE
Examples of Bad practice at reporting and why
It is easy to fall in temptation over sansacionalistic reports that move the reader. Most times journalists do it without even reasoning about it. Either because they have seen it being done before, or because they know they will get a lot of readers' attention. Not always is it their fault. Their beliefs have been molded in an ableist society. They do not know better. And the public is eager to read something moving or even disgraceful about someone else's lives, so that they can feel good for not being in the portrayed people's shoes.
The highlights and comments below are meant to point out nocive discourse, clarify why they are harmful, and offer more constructive alternatives to the wording.
Journalists should treat stories about people with disabilities as any other - check their sources and numbers, not believe completly in what one interviewee say and find out proper language to use.
Parenting an intellectually disabled child: life forever on duty (COMMENT: ALREADY IN THE TITLE AN ASSUMPTION AND NEGATIVE COMMENT)
People with intellectual disabilities are a silent minority, often forgotten by a society that finds it too easy to look the other way. Their needs are overwhelming – and ongoing – yet their parents face a lifetime commitment. (COMMENT: GENERALIZATION - NOT ALL PEOPLE WITH INTELLECTUAL DISABILITIES HAVE OVERWHELMING NEEDS. IN FACT, ONLY A SMALL PROPORTION DO.)
Alex Browne is waiting for his mother. He hovers next to his bag, which he packed this morning, beside the locked front door of the fraying house he lives in during the week. An overlooked fire alarm battery beeps regularly from another room. Although Alex says nothing, it's hard to miss him. At 22, with a pointed chin and softly drooping eyes, he is a towering young man, around two metres tall, wearing baggy jeans and a collared T-shirt. He has long fingers and a slightly oversized head. Only the average-sized Converse All Stars on his feet seem small.
He is mostly silent, but not because of adolescence. He cannot speak, so instead of words he sounds out loosely formed single syllables, (COMMENT: INSTEAD OF SAYING CANNOT SPEAK, THE WRITER COULD HAVE SAID HE USES SINGLE SYLLABLES TO COMMUNICATE) loud enough to be heard across a room and seemingly so confronting that a middle-aged man in a food hall once complained to Alex's mother that hearing them ruined his lunch (COMMENT: NEGATIVE AND DEPRECIATIVE).
Alex has Sotos syndrome, a rare genetic disorder (COMMENT: BETTER WORDING - GENETIC OCCURRENCE, ARRANGEMENT), sometimes called cerebral gigantism, responsible for his height, his advanced bone age, his impaired speech and his intellectual disability. Physically, chronologically and legally, he is an adult. But while many young men his age are at university or working, facing endless potential, Alex is immersed in an endless, limiting childhood. He cannot read or write, nor can he understand complex ideas, or follow more than basic instructions. Immune to danger and oblivious to the bits of lunch stuck to his face, he is the child-adult who cannot be left alone, who figures that two purple inflated balloons – the total contents of the packed sports bag sitting at the door to his group home – are all he needs for a weekend away (COMMENT: HIGHLY DEPRECIATIVE)
"It's like having a toddler, but forever," (COMMENT: DEPRECIATIVE) says his mother Vanessa Browne, as she arrives at the simple brick house, with its peeling window frames, ready to take her son back to his old neighbourhood for the weekend. The drive from her home to this group house in north-west Sydney spans 33 kilometres and multiple suburbs, takes the best part of an hour, and is the first leg in a journey of joy, sadness and frustration that consumes most of her weekends. (COMMENT: PERSONAL VIEW)
"How are you darling? Everything good?" she asks as she opens the screen door and finds Alex clutching a plastic plate in the hallway, easily dwarfing the confined space. The walls around him are dull green, and several of them have massive holes that he punched recently, out of frustration, his devoted mother (COMMENT: PERSONAL VIEW) says, at the lack of meaningful activities with which to fill his weekdays.
Browne is a pragmatic woman, warm and mostly optimistic, a single parent who spends her weeks working in the insurance industry knowing she is bound for life to her son and his disorder (COMMENT: NEGATIVE MEANING. PREFERABLE WORDING - CONDITION ) "Except for the times that I am at work and, even then, people call me … everything, every weekend is about Alex." She leans up to kiss her son's cheek and he responds wordlessly, dropping his shoulders and loosely draping his arms around her, his hands hanging limply. (COMMENT: UNECESSARY AND DEPRECIATIVE ADJECTIVATION)
"I'm pleased to see no new holes in the wall. I'm very pleased about that, thank you," Browne says brightly as she takes the sports bag and begins two days of mostly one-sided conversation (COMMENT: DEPRECIATIVE), leading her first born from the front door of the group house, through a childproof gate, which he towers above and pops open reflexively, and down the street to her old red car, which Alex will never be able to drive.
In the familiar comfort of the front passenger seat, still clutching the P-plate, head skimming the roof, shoulders sagging, Alex points his long index finger at the CD player – a cue for his mother to switch on yet another best-of compilation that makes up the background noise of most of their weekends. She presses the play button, then starts the engine. Her version of parenthood is a continuum of struggle; she has rarely had a carefree day in 22 years and, for the next 48 hours, she will exist in an almost constant state of alert.
Nearly 700,000 Australians have an intellectual disability, the majority of whom are unable to communicate successfully. "They are the only people with disabilities that are unable to speak for themselves," says Professor Christine Bigby, director of the Living with Disability Research Centre at La Trobe University. "They are continually, for the rest of their lives, going to be interdependent."
The odds of a rich life are slim. Restricted intellect means work opportunities are limited, and many are in the lowest socio-economic group, dependent in the long term on social security. And for all their interdependence, their circles of friends tend to be small and limited to others with intellectual disability and family members, further compounding their isolation. As Bigby says, what they really need are people who will do "not just the physical caring but the caring about".
That burden, invariably, falls on close relatives. According to the Australian Bureau of Statistics, adults with an intellectual disability are six times more likely than those with other disabilities to have parental assistance. But where other parents can step back from their responsibilities over time as their kids grow up, those with intellectually disabled children are forever on duty.
"They can't speak for themselves, so you've really got to think for them," says Vanessa Browne of her demanding parenting role, hands on and endlessly vigilant. When she gave birth to Alex in 1994, she had no idea how long her active child-rearing years would stretch; that she would still be gently pointing out to her 22-year-old son when he could not cut up his meal what was "fork food" and what was "spoon food", and that she would routinely carry coloured pencils well into his adult years so she could produce yet another detailed drawing of a car to keep him occupied.
Browne is a registered nurse and trained for a time at a facility for children with an intellectual disability. "When I worked there I recall thinking all of these lovely kids had been abandoned by their families. They were all wards of the state. I couldn't understand why they were there. I always thought if I had a child like that, I'd keep the child. Anyhow, I got my wish."
After an uneventful pregnancy, Alex was a big baby and was delivered by caesarean. His size was, in hindsight, the first indication that his life's path would differ vastly from other children's. With his long skinny body and big head, "he looked a bit like Yoda", his mother says fondly. Still, doped out on painkillers, she was not overly alarmed when, at three days, a paediatrician told her there was "something unusual" about her first born, and that he would need to be watched. It would be a year before Alex was diagnosed.
By then he'd missed many milestones. At three months, when other babies at his mothers' group would feed then sleep, he screamed incessantly. When he started solids at six months, his appetite became insatiable. He didn't walk until four and never uttered a word. Toilet training took years. "I don't ever recall feeling unhappy about it all; he was still breathing, still sweet and lovely," says Browne, 52. "He's healthy. He's not going to die; he doesn't have heart defects. He doesn't have anything that's going to shorten his life."
But even in those early years, his limitations sent ripples through his family. Invitations to friends' houses slowed, then stopped. "Because they didn't want Alex to fiddle with things," says Browne. "It's very subtle but you start to realise, 'Oh, we didn't get invited to that party.' "
Between occupational therapy sessions, medical appointments and the arrival of a second son, William, Browne was constantly exhausted and when Alex was three she stopped working to care for him full-time.
But challenges continued to mount. By 2005, Browne's marriage had ended. A single mother raising two sons, one of them with significant needs, she wanted to be at home. But she needed an income. Alex boarded at a special school during the week. (The last of its kind in Sydney, it has since closed.) His mother worked for four of those days, not always for employers sympathetic to her enormous personal load, and was home when Alex arrived for the weekend and her life was again turned over to him, a pattern that has never really stopped.
Years later, she still spends most of her spare time with her adult son, hyper-vigilant to the dangers he cannot sense – power points he might silently explore or roads he might cross – conscious of him trying to walk out the door and denting her car again by banging too hard on it, his way of indicating he wants to go for another drive.
"To me, he is the most gorgeous person in the world; I just love him to bits," says Alex's 80-year-old grandmother Jude Browne, a drive to whose northern Sydney home is a regular feature of Alex's limited social calendar. She still cries over the frustration the first of her 13 grandchildren endures each day, his limited understanding and inability to speak. "It's sad that he's not able to enjoy the life of a young man," she says, and wipes her eyes.
The direct journey between the homes of those Alex loves most never takes more than 20 minutes, but few things are straightforward in his dependent life. By the time his mother has left home, collected him, driven to his grandparents, then headed back west – Alex invariably crying for the entire return trip to his group home – before finally, reluctantly, turning back towards her own bed, she can sometimes have been driving for four hours.
By Sunday afternoon, Vanessa Browne is exhausted, wracked with arthritis, her neck sore from reaching up to shave her soaring son. The costs of her devotion are mounting. She has not properly cleaned her cluttered house in a year and a half (it helps that she has few visitors), and her career has stalled. She has become less emotional, and less sympathetic towards those whose lifelong good fortune has been abruptly struck by misfortune; all she can see is how lucky they were to begin with. When she and her youngest son have lunch together, disability is a frequent topic of conversation.
"Everything we do is relating to Alex," says William, 19. He is a quiet young man, and his brother's dependency has overshadowed much of his life. He has not had a holiday since primary school and has only recently realised that his childhood, focused so intensely on his sibling's needs, was not like others. Sometimes, when Alex was a teenager, William would cower in fear as his big brother hit walls or threw radios off balconies because that was the only way he could express his anger.
Even now that Alex's rages at home have largely subsided, and he lives elsewhere during the week, the net effect of his requirements lingers. "The last few years I have neglected myself," William says. He left school early and is not sure where his future is. "I just haven't really had much of a social life or attention for other things."
Since he finished school three years ago, mostly acquiring life skills such as dressing and undressing, Alex has lived in the distant, rented share house with three other young men, where an ever-changing collection of support workers, some of them strangers to the young men, tend to their weekday needs. "It's not what I want for Alex," says his mother, who would prefer that he lived with the same housemates he has known since school and much closer to home. But few houses are available, and right now she has no clear idea where he will live beyond the next few months. Another burden.
When Alex was 17, Browne had full parental rights. Then, according to law, her son became an adult. "Whenever I have made inquiries on Alex's behalf since he turned 18, I've always come up against this wall of, 'Well, why isn't he making this inquiry himself?' "
Like all Australians, Alex has human rights and legal rights, but he has no concept of either. Mostly it is left to his mother to speak up on his behalf – as she did recently in a television interview about Alex's uncertain housing future and her concerns about the quality of his care. It's a situation that sometimes leaves her feeling powerless, and other times as though she's at war. "Parents do this fighting for their child from the day they are born until the day they die because the rest of the community has not been interested," says Christine Bigby.
The bureaucratic hurdles are endless. When Browne recently applied to see Alex's Medicare records, her request was declined. "Because I wasn't Alex. And I said, 'Well Alex can't really fill out the form.' " Nor could he sign a suggested letter granting Browne access to his details, let alone understand its contents, so for now his records remain closed to his mother.
Even setting up a bank account can be fraught. All but $90 of the social security that Alex receives each week goes towards his accommodation. He cannot open a bank account himself, yet he is required to have one. Short of setting up the framework before their children turn 18, the alternative, says Browne, is that "parents keep working until they can find a bank manager who really gets it and they have to break the bank's internal guidelines to do it".
One option is for Browne to become her son's legal guardian. It's a detailed process for which she is laboriously preparing to apply (she needs to find, for example, multiple doctors to attest to her suitability, when she and Alex know only a few), but even if she is successful the outcome worries her. "If they do accept you, you've got to start reporting to [the authorities] … I find that a bit intrusive."
Because of Alex's limitations, much of his mother's parenting has become public, a collaboration not just with Alex's father, who sees him every few weeks, but with the bureaucrats and service providers who often leave Browne, as her son's primary carer, feeling unfairly portrayed. "It's this assumption parents are out to rip off their child," she says. "That we're stealing their money."
Having dedicated much of her life to her first born, Browne is confident she knows him best. Over 22 years she has come to understand Alex's love for budgies, cars and pad thai with king prawns, and has learned to accept his limitations. "He doesn't need to understand how the stock exchange works, but he can remember where we parked the car, he can remember people and place." She has tried to ignore the neighbour who would refer to Alex as "that retard son of yours", even though the words have lingered, and has heeded the advice of the doctor who suggested years ago that, in order to survive this life, she should share her eldest son around.
So she took respite care where it was offered and sometimes Alex would stay over at his grandparents'. But then adulthood loomed and the opportunities for sharing diminished, and now she is facing a long and difficult future, with no idea how or where it will end.
"We are all living in fear of dying," Vanessa Browne says plainly but devoid of self-pity. "You can't die. You've got to stay alive as long as you can to oversee what happens to your child."
THE REPORTER BROUGHT HER PRE-CONCEPTED VISION AND ASSUMPTIONS, ALONG WITH HER PITY TO THE TEXT. THIS REPORT IS DAMAGING AND DISRESPECTFUL OF ALEX BROWNE AND HARMS THE IMAGE AND DIGNITY OF PEOPLE WITH DISABILITIES.