Jamie-Lee Dwyer was eight-years-old when she began having trouble walking. She would trip over her feet, she couldn’t keep a straight line.
It took three years of her parents visiting doctor after doctor before she was diagnosed with the rare degenerative disease Friedreich’s ataxia.
The rate of deterioration changes from person to person, but for Jamie-Lee, the disease put her in a wheelchair at 15.
“When I was diagnosed, the neurologist said I wouldn’t make it to 20,” she told 9News.com.au.
Very little was known about the disease then, Jamie-Lee said.
Now, shortly before her 30th birthday, the coronavirus pandemic poses a new and particularly grave threat.
‘Two for two’
After Jamie-Lee was diagnosed with Friedreich’s ataxia, a condition caused by a recessive gene, specialists suggested her young sister Samantha, who was only nine at the time, be tested too.
She hadn’t shown any symptoms at that stage, so when the results came back positive the family was stunned.
“Mum and dad hit the jackpot. They’re two for two,” Samantha told 9News.com.au.
Among the many things the sisters share is their sense of humour.
The sisters, who are often mistaken for twins, live together in a two-bedroom apartment in Brisbane’s western suburbs.
Their apartment block is home to 15 other young Australians with high-needs disabilities.
Both Jamie-Lee and Samantha, who has just 30 per cent lung capacity, are at acute coronavirus risk because of the heart disease their Friedreich’s Ataxia caused, their doctors have told them.
“I’m worried for myself and my sister. For everyone here,” Samantha said.
Death, for Jamie-Lee, is a less anxiety-inducing prospect. After almost 20 years of grappling with her own mortality, she describes herself as “pretty mentally tough”.
“I try not to think about it.”
Years of training have taught her to ignore what she can’t control.
“It is scary, but it just takes a lot of people being careful and hopefully after a few months it won’t be so scary anymore,” Jamie-Lee said.
Both sisters have been in what they call “complete lockdown” since mid-March.
Their version of self-isolation though is, by nature, very different from the rest of the population’s.
Coronavirus: social distancing with a disability
Social distancing is simply not an option for many of the millions of Australians who have a disability that requires them to rely on support workers for their daily needs.
While neither of the sisters have left their apartment for almost a month in a bid to protect themselves from the pandemic, around a dozen different carers come into their home each day.
“We don’t really have a choice,” Jamie-Lee said.
“It’s scary in that we don’t know if they’ve been exposed.”
While their carers are all diligent with hygiene, they said, and are taking extra precautions because of the outbreak, basic precautions like staying 1.5 metres away are simply not possible.
Disabilities care: a turnover industry
Just over 40 per cent of the carers in the disabilities industry are employed casually, frequently moving between a number of homes and clients, according to a 2018 NDIS report.
Vince is one such worker. He went into caring straight after he finished high school three years ago because he wanted to contribute to the public good without a degree, he said.
The company he works for, Aruma, have been sending out a near-constant stream of communications to their workers, introducing sign-in books and even temperature tests at some of their group homes, where a number of disabled Australians live together in a single house.
He said hygiene has always been a top priority in the industry, since his clients are not obliged to tell their carers if they have a communicable condition.
Now, with coronavirus, is the carers themselves who pose the health risk.
“We’re the link between the outside world,” Vince told 9News.com.au.
He said he has been wiping down everything other carers might have touched when he arrives for his shift, including the keyboards in the office and the dishes he uses.
“I know where I’ve been and what I’ve touched,” he said.
The other carers coming into the house, he can’t answer for.
Unlike Samantha and Jamie-Lee, many of Vince’s clients have intellectual disabilities as well as physical conditions.
Many of them, he said, struggle to comprehend the pandemic – which means they aren’t particularly anxious about the special risks it poses to the disabled community, many of whom are immunocompromised.
“If they can’t make informed decisions themselves, they have to trust their carers,” Vince said.
“Regardless of the pandemic – these people need support and care.”
‘This is a crisis point’
Anthony Ryan, who is the CEO of Youngcare – the organisation that provided the housing where Samantha and Jamie-Lee live, said the coronavirus pandemic has been extremely difficult for many people living with disabilities.
“This is a crisis point for them,” he told 9News.com.au.
Todd Winther has cerebral palsy and lives just across the hall from Jamie-Lee and Samantha. The 36-year-old is sharp and eloquent, using his flair in his job as an advocate for the disabilities community.
“Disability is a lack of choice,” he told 9News.com.au.
“You don’t get to choose when you wake up, when you go to bed, when you eat.”
Now, coronavirus means many don’t get to choose the terms of their isolation, despite many falling into the most at-risk group.
He usually works four days a week in the Youngcare office there but stopped going in, or leaving his home, weeks ago.
His early isolation was more to protect the other people in the building, like his neighbours Samantha and Jamie-Lee, he said.
“Everybody is worried, everybody is scared. And the natural thing is to look out for yourself and your loved ones. But everything is bigger than that now – it’s not just about the individual, it’s about everybody else.”
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