When you’re a blind parent, you can’t see if your kids are red in the face and choking, if a scrape is infected or not. When they’re infants and you’re changing their nappies, you’re never entirely convinced you haven’t left poo somewhere on their bottoms, on their faces, on yourself. Eventually, you become so worried and exasperated you resort to stripping off completely and taking them naked and howling into the shower with you.
There’s relief when they’re older, talking and able to communicate their discomforts, but even then you can’t read their body language or see beyond their angry words to the silent tears rolling down their faces. The sheer act of growing is coupled with its own brand of sadness. It’s around this age, says parent of two Gerrard Gosens, that you start to lose a concept of how your kids look.
It’s a strange thing for a blind person to say, but Gosens, born with aniridia, a condition where parts of the irises are missing or underdeveloped, explains it like this: “On the day they’re born, right through to perhaps their first year, they’re about this big,” he says, spreading his hands a foot apart. “You can have a full concept of what they actually look like. I can create a picture of this cup in my mind” – he grabs a nearby mug – “because it’s only that big.” He places his palms flat on the wooden table in the family’s multi-storey home in Graceville in Brisbane’s south- west. “But I can only put my hand on this part of the table, so I can’t create a picture of it in my head.”
You could try to describe to Gosens, 38, a special projects manager for Vision Australia, what he looks like (tall, lean and ridiculously fit), but adjectives only get you so far. Most of the time for him, drawing a complete mental image of someone’s appearance – his own, those of his wife Heather, 44, son Jordan, 14, or daughter Taylor, 11 – is an abstract exercise that verges on the impossible. And that’s the toughest thing for him about being a parent: not being able to see his kids, not even in his mind.
THE GOSENS FAMILY IS ONE OF SEVERAL HUNDRED thousand around Australia in which one or both parents has a disability. Disability is, of course, a broad term: it could mean anything from arthritis to brain damage, hearing impairment to paraplegia. The most recent figures from the Australian Bureau of Statistics (for 2003) put the number of families with children aged 14 and under where one or both parents is disabled at 438,000. This equates to about one in five Australian families, and Disability Services Queensland says that ratio in this state has largely remained unchanged.
Angela Tillmanns, CEO of the Cerebral Palsy League of Queensland, says a disability need not be an impediment to parenthood. “In some cases I think it’s an advantage,” she says. “If you’ve got a disability, you face challenges every day. You’re already very used to planning. ‘How am I going to get to that venue?’ Or ‘How am I going to be able to do a certain task?’ When they think about having a child, they automatically go into those problem-solving skills.”
But this is emotionally fraught terrain. How will you cope with the physical demands of raising children? How will others react to your decision to have children? And what if you pass your condition on to a child? There’s a special type of worry that comes with contemplating your kids facing a similarly rough childhood to your own. In some parts of disability communities there are those quietly optimistic about advances in technologies to screen, prevent or even cure disabilities. However, others feel these technologies could also be used to perpetuate a paradigm of eugenics, and the notion that there’s such a thing as a perfect human. Many members of the deaf population, for instance, don’t regard their hearing loss as a disability and see these technologies as a direct threat to their community and culture. In a controversial case in 2002, a deaf lesbian couple in the United States, Sharon Duchesneau and Candace McCullough, sought a sperm donor whose genetic deafness would almost guarantee the birth of deaf children. When the couple’s daughter was born deaf and their son severely hearing-impaired, Duchesneau and McCullough said they considered it a “special blessing”. This case, however, represents a very rare parenting perspective. Most of the parents interviewed for this article said that if they knew their child was likely to inherit their condition, they would rethink their decision to have children.
When the Gosenses, who married in 1993, decided to have children they were told there was a possibility of passing on aniridia. “We weren’t even told 50-50,” Heather says. “Instead, there was ‘a chance’ our child would be born blind.” The couple made a decision: regardless of the outcome, they would make sure their child had a good life.
When Jordan arrived with no problems, they saw it as a green light to have more children. Then Taylor was born with aniridia. She has about 4 per cent vision, although some people wouldn’t know it at first: she rides her bike, loves sport and attends a regular school. This is a physical family; Gerrard is a three-time Paralympian (in long-distance running and Goalball, a ball sport specifically for the vision- impaired), has run several times from Cairns to Brisbane for charity, and came close to scaling Everest in 2005 (the expedition was aborted when he fell three metres into an icy crevasse). Heather’s also a distance runner, and the sporting bug has bitten both Jordan (skateboarding, AFL and volleyball) and Taylor (horseriding and rowing).
Though canes and a guide dog might be useful when she’s older, for now Taylor moves around her school with an orientation and mobility instructor, who has taught her how to navigate the campus using landmarks. She has a laptop with a screen- reading function and large-print textbooks. Still, it can be rough when friends disappear during recess and she has no way of finding them without help.
“If we were to be asked whether we’d have another child now, knowing what we know, would you?” Heather asks Gerrard. “Would you risk it?” He hesitates. It’s as though this is the first time they’ve explicitly had this conversation. “Depending on the environment,” he starts, “of where we were, physically and financially … ” “I wouldn’t risk it,” Heather interjects. “We don’t have the support of extended family. It’s us or nothing, bringing up our children. Gerrard looks and acts like everything is hunky-dory, but it’s not. Every day has a toughness attached to it that he has to overcome … from simply tripping over something and cutting his head open on the wall to trying to get a taxi to make a meeting in time. He’s at the time of his life where he problem-solves everything for himself, but to watch your daughter learn how to problem-solve?
I can’t do that over and over again. It’s too tough.” While Gerrard and Heather are both matter-of-fact about the limitations his blindness imposes, Heather points out it’s also made them a tight-knit parenting unit: “It instantly pulls you together when you’re in this situation, because I want him to be successful as a father and as a parent.” And, she adds: “If someone looks at our family, as we’re walking hand-in-hand somewhere, I’d hope they’d look at us and go: ‘Wow, pretty cool family.’ They’re not your norm. But gee, they know how to make it work.’”
WHEN JADE O’HARA-ROBERTS ENCOUNTERED, as many people with a disability do, the “Why would you want a child?” attitude, both she and her husband Rick shrugged it off. “We don’t worry about what people think,” he says.
Jade, 23, has ataxic cerebral palsy, a non-inherited condition which affects her muscles to the extent that she requires a support worker in the mornings to help her shower and dress. She has two wheelchairs – one manual, one electric. Though she can hold her own weight to stand, she has difficulties with balance and coordination, coupled with trembles and unsteady movements. Her speech is also affected, so her preferred method of communication is email. It’s how we chatted for this story, Jade responding to my questions from her Bundaberg home, painstakingly typing her words with her nose. It’s an exhausting and time-consuming process for her, requiring regular breaks between sentences.
Jade first met Rick, 36, at Royal Hobart Hospital, where she was a patient and he worked in support services. “He saw me on occasions during his ward rounds,” she says, “then months later we bumped into each other at a local pub. We got talking, and our relationship went from there.” Says Rick: “Jade’s beauty struck me, her smile and her personality. I don’t see people for what they can and can’t do. I see them for who they are. A lot of people ask me what I see in Jade, and why I’m here. All I can say is what the heart feels; the head’s got nothing to do with it.”
Despite Jade’s symptoms slightly worsening over the years, she and Rick wanted children. “We had a discussion with a gynaecologist about the prospect,” Jade says. “She seemed to think there shouldn’t be any complications with me going through pregnancy.”
It wasn’t easy, she admits, and the couple’s daughter Amber Grace was delivered via caesarean, healthy and able-bodied, in February 2007. Rick, who was working as a courier, needed to take time off to look after Amber. “I’m surprised with how much Jade has been able to help, and been able to do,’’ Rick says. “I thought I was going to be doing the whole lot. But Jade managed to breast-feed for some time, which surprised me no end.”
Jade was fiercely determined to ensure her role as a mother wasn’t diminished. Accepting her limitations, though, was frustrating. “It was a challenge accepting the physical things I couldn’t do for Amber, like not being able to pick her up,” she says. “It’s a natural instinct to pick a crying baby up, providing comfort by cradling. That was my greatest despair.”
She adapted in other ways: she would get pre- made bottles of milk from the fridge with her teeth and place Amber’s dummy in her mouth with her toes. When Amber was old enough to eat solid food, Jade would pick up the spoon in her mouth to feed her. And then Amber did something that would surprise both her parents. “I got down from the table to get something or answer the phone,’’ says Rick. “So Amber picked the spoon up and fed Jade the rest of her lunch, at 18 months old. It shocked both of us. And she managed to do it without even making a mess. There’s been surprises the whole way through.” Day-to-day, Jade spends a lot of time with her daughter but always needs Rick or a support worker nearby to call on. “She’ll read books with Amber, sit down and watch DVDs with her,” Rick says. “They interact really well doing things like that now and they can spend a fair bit of time together, without anyone having to step in.”
At two, Amber is walking and talking freely – two things denied Jade because of her CP. But it’s far from a bittersweet experience: “As a mother, seeing Amber reach milestones is the greatest thing,” she says. Still, two-year-olds can be hair-raising for any parent: tumbles, getting into mischief, escaping through the back door, challenging their parents. “Unfortunately, because Jade can’t chastise Amber too much, she doesn’t take much notice of her mother. So I’m the main voice of reason in the house,’’ says Rick. “Once she gets older and understands a bit more, it’ll be easier for Jade.
“We’re the same as everyone else. Nobody’s health is perfect, nobody’s life is perfect. Everyone deals with their own issues and problems in their own way. People just have to understand we’re still normal people.”
SARAH AND MARTIN DAY BOTH HAVE A PHYSICAL disability, and their daughters could, if they wanted to, literally run circles around them. For now Rebecca, 10, and Natasha, 7, are sweet and incredibly well-behaved, although the Days are mentally preparing themselves for the teenage years. “We mightn’t be able to run,” Martin says, laughing dryly, “but we can certainly shut their bedroom doors. There’s always a way.”
Martin, 38, has spinocerebellar ataxia (SCA), a rare genetic condition with myriad types, the symptoms including limited hand coordination, speech and eye movement. He uses a wheeled frame to help him walk. At his job as an administrative assistant with non-profit disability support group Life Without Barriers, computer-related tasks like data entry can take him a bit longer.
No tests existed to diagnose his SCA prior to birth; it was picked up when he was a few months old after his parents noticed he seemed not to be developing at the same rate as his older brother. Even though SCA is an inherited condition, Martin and his immediate family know of no other relatives with it.
Sarah’s cerebral palsy, acquired at birth, means she has a slight limp and difficulty grasping things with her hands, like a pen. What she can’t get down in handwriting she makes up for with typing, a skill she perfected pounding typewriters at school.
Sarah and Martin were both 21 when they met in the early ’90s, working at the Cerebral Palsy League of Queensland’s headquarters in inner-Brisbane’s New Farm. Martin claims to have been smitten when he saw Sarah on the old 177 bus route on the way to work. Two months after their first date, he blurted out, “I’m going to marry you.” Three years later he did. Theirs is no different from most families. They both drive, and daily chores at their Rochedale home on Brisbane’s southside get done, albeit at a slower pace. Other tasks – changing lightbulbs, tap washers and gardening – require extra help. Still, Martin says their disabilities make little difference to the nuts and bolts of raising their two girls, especially now the prams have been packed up. Sarah wasn’t concerned about having children; Martin, however, wanted to consult a specialist about the chances of passing on SCA. “[The specialist] didn’t actually say, ‘All clear, 100 per cent no chance of passing it on’,” he says. “But he said, ‘For what it’s worth, the chances of it passing on to your children are negligible.’”
However, adds Sarah, the specialist’s initial reaction was one of mild, patronising dismay. “Like, ‘Why would you want to have children anyway? You’ve got disabilities yourselves.’ And I said, ‘Well, sorry. I want children.’” Neither Rebecca nor Natasha has SCA.
As a family unit, the combination of two able- bodied girls alongside their disabled parents sometimes attracts the sort of attention the Days don’t want. One elderly woman has twice approached Martin and the girls at the local shops and put money in his pocket. “When people do things like that,” Martin says, “you look them in the eye: ‘Are you trying to offend me?’” Rebecca tightens her jaw slightly. “It’s freaky,” she says, “when someone’s giving my Dad money.”
The irony of situations like this isn’t lost on the Days: that it is they who make concessions for other people, give others the benefit of the doubt, not the other way around. If I didn’t have this condition, Martin asks himself, would people be approaching us to spontaneously extol the gorgeousness of my family?
“We don’t want people to feel, ‘Oh, you’ve done well! Congratulations!’” says Sarah. “It’s just: Daddy’s legs don’t work. Mummy’s hands don’t work. But we do okay.”
WHEN EVON AND JASON PORTMAN’S SONS NEED their attention, the boys grasp their parents’ forearms to ensure everyone’s faces and mouths can be seen. There’s no talking behind closed doors here in their Buderim home on the Sunshine Coast. Everyone needs to be close to be understood. Evon, 34, and Jason, 36, are hearing-impaired and rely on a combination of hearing aids and lip-reading to communicate with their boys Javon, 9, and Jaidan, 7.
The couple met as teenagers at a camp for deaf kids and clicked: both had a similar level of hearing loss and, although familiar with Australian sign language (AUSLAN) like the other kids, they came from families who encouraged them to speak and enrolled them in speech therapy at a very young age. Evon’s hearing loss can be traced back to her mother’s rubella during pregnancy; rubella was also thought to be the cause of Jason’s loss, although he discovered in his twenties that he was also born with an empty space behind his left ear where his cochlear should be.
Without their hearing aids, the couple can hear next to nothing. With his aid, Jason has about 30 per cent hearing in his right ear; with hers, Evon has 25 per cent in her right and is adjusting to a cochlear implant in her left (at the moment it’s making her dizzy, and sometimes brings on severe migraines). When their boys were infants, they weren’t confident that they’d hear the boys’ cries if they slept in another room, even with a baby monitor. So they all shared the same room, the couple taking turns leaving on their hearing aids overnight – something that prevents a good night’s sleep.
When each of the boys turned five, Evon asked them: “Do you know that your parents are deaf?” They both said yes. Javon says they picked up enough cues and signals to figure it out. “When the phone rang or something, I thought [Mum and Dad] could hear it, but they couldn’t. So I picked up the phone, then answered it. I do that all the time now.”
The boys help out in other ways, too: when other people speak too fast in everyday conversation, Javon and Jaidan repeat what’s been said, and they correct their parents’ pronunciation when it’s needed. Still, her sons’ approaching teen years play on Evon’s mind. Are they going to sneak into their rooms for secret phone calls? Creep out the house without their parents hearing? “I ask myself: ‘What’s it going to be like?’” she says. “Jason tells me, ‘Oh my god, you’re too worried’, but I’m not too worried. I’m just getting myself ready.”
One person with whom Evon might want to compare notes is Cairns-based Suzy Murdoch, secretary for the nationwide group CoDA (Children of Deaf Adults) Australia. Raised primarily by her profoundly deaf mother after the death of her father, Suzy, 31, admits that as a teenager she relished exploiting her mother’s hearing impairment. “I used to sneak out at night with friends, and we’d climb out the windows,” she says. “It’d be like: ‘You can make as much noise as you want. Just don’t turn on the lights.’ As soon as the light came on, my mum would be up.”
Suzy’s mother Carol almost exclusively used AUSLAN to communicate with Suzy and her older sister Karen, even though both girls could hear. (Suzy says when her mother did occasionally speak to them in public, other children would openly laugh at her voice.) Children raised in these types of households consider themselves bilingual, and draw parallels to being raised by migrant parents. “We’re a cultural minority, but don’t have a passport to say where that culture belongs,” Suzy explains. “We’re said to be deaf in every way, except hearing status.”
When Carol and her husband Patrick, who was also deaf, announced her first pregnancy, Carol’s father, a surgeon, insisted she wasn’t going to raise the child. The couple ignored suggestions they wouldn’t be able to cope. The subject was raised again when Carol became a single parent after Patrick’s death from a brain tumour. Karen was then seven, and Suzy five. “But my mum is … what’s a nice word for stubborn?” Suzy laughs.
In her work with CoDA and as an AUSLAN interpreter, Suzy says she still encounters some old- fashioned attitudes. “Like, ‘Oh wow: you’re going to raise this child?’ Well of course, there are benefits to raising children as bilingual. Language is such a massive part of your identity, and that’s why CoDAs always call themselves culturally deaf. It’s something that sets me apart and makes me different. It’s something I treasure, something I celebrate.”