Becoming disabled is as easy as this: empathy needed!

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NZ jogger reveals how Guillain-Barre Syndrome left her 'locked in' her own body

How pins and needles in a jogger’s toes led to ‘terrifying’ total paralysis. Pharmacist Anstey Campbell, 29, from Dargaville, noticed she had pins and needles in her toes on the morning of January 17, 2019 after returning from a run.

“I noticed pins and needles in the toes of my left foot after a run before work, but I didn’t think anything of it,” Anstey said.

“By lunchtime I had pins and needles in both feet, I thought it was the new shoes I was wearing so went home and changed them,” she added.

But as the afternoon progressed, the feeling spread and that evening her knees buckled beneath her. After a sleepless night due to chest pain, Anstey got up the following morning and fell to the floor.

Through the day, Anstey’s body was gradually taken over by paralysis which worked its way up her body to her face.

'The weakness was spreading'

“We called the ambulance and I was taken to our local hospital where I saw a GP who was well known to me,” Anstey recalled.

“The weakness was spreading to my upper body and face by this time. Within 15 minutes, the doctor diagnosed me with Guillain-Barre Syndrome (GBS) and she told me what to expect and referred me to the emergency department of our nearest major hospital.”

Guillain-Barre Syndrome (GBS), is a muscle weakness disorder caused by the body’s immune system attacking the nervous system.

Anstey was transferred to ICU, but as her breathing deteriorated and her entire body became paralysed, even her eyelids, doctors decided to put her in an induced coma for a week to save her lungs.

'My breathing was deteriorating'

“Over the course of the day, I slowly became paralysed from the legs to the top of my head,” she said. “By the time I was intubated I was so weak I could barely open my eyelids.

“My breathing was deteriorating, and the doctors could see the struggle I was having to breathe so they decided to put me under to protect my lungs.”

For the next 31 days, Anstey was unresponsive but she was actually experiencing ‘locked in’ syndrome – where a person’s body is paralysed but they are conscious and aware of their surroundings.

'It was the most terrifying thing imaginable'

“It was the most terrifying thing imaginable,” Anstey said. “I remember the doctors tried all these tests to get some sort of response and it was really terrifying when I realised I was stuck inside.

“I was trying to do what they were telling me to, but nothing was happening. I remember the doctor pushing hard on my brow bone to try and make my eyes open, it was so painful and all I was saying inside was ‘stop’

“It was terrifying being unable to communicate, especially as I was so uncomfortable and I couldn’t say I was in pain. With my eyes permanently shut, it was difficult to establish day from night and my only cue was when the visitors dwindled.

“The first movement I got back was a twitch in my jaw, and it became one twitch for yes and two twitches for no.”

After 86 days on a ventilator, Anstey had to learn how to breathe again – something which was once so natural but became a difficult task.

Anstey is still in hospital, but she can return home each weekend. She has regained some strength in her upper body and has recovered movement since doing physio twice a day for the last six months.

“I have spent a lot of time asking why this happened to me, but it got me nowhere except feeling resentment towards the hand I’ve been dealt,” she said.

“If something unexpected happens in life, let go of the life you had planned and accept the new story you get to write.”

7news.com.au/lifestyle/health-wellbeing/nz-jogger-reveals-how-guillain-barre-syndrome-left-her-locked-in-her-own-body-c-542979

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“If something unexpected happens in life, let go of the life you had planned and accept the new story you get to write.”

Att. Hank...... hopefully N.Z.'s DHS has more empathy than its Australian counterpart. Cheers bear

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Why Australia's prison system can be 'terrifying' for people with an intellectual disability

A new website aiming to help people with intellectual disabilities get fairer outcomes in the criminal justice system is about to be launched in Victoria. Here, a former inmate tells SBS News why the support matters.

It wasn’t until Claudia* was in custody in her 30s that she realised she’d been living with a disability for decades.

“I became aware of a big change in me when I was 17, but I wasn’t sure what it was,” the 48-year-old told SBS News.

Twenty years later, as she was entering prison, she was diagnosed with an acquired brain injury (ABI), a condition caused by post-birth damage to the brain and which affects cognitive skills and behaviour.

“I suspect I received my ABI from violence in my childhood home,” Claudia said. “As my life went on, I went on to experience violence at the hands of others, as well.”

Throughout adulthood, experiences of domestic violence, homelessness and substance abuse saw Claudia repeatedly come into contact with the justice system as an offender.

While presenting to police, lawyers and magistrates with visible injuries, few offered Claudia the support she felt she needed.

According to disability rights advocates, many disabilities, like Claudia’s, are hidden and can be misconstrued as uncooperative or drug-affected behaviour.

Claudia said she also struggled to remember her court dates or engage with the complex processes occurring around her.

“I was always quite frightened. I felt very alone [by] not being able to communicate with the person who was supposed to be helping me,” she said.

“I met very heavy-handed male police officers. Lawyers never had time to learn anything of value about me when I was being represented.”

“And being in front of the magistrate, someone making such life-changing decisions about me, was really terrifying.”

‘Early intervention critical’

People with disability, particularly cognitive disabilities, are over-represented in Australia’s criminal justice system.

Data released in May showed Australians between the ages of 18 and 34 living with disability were incarcerated at three times the rate of those in the same age group without disability last year.

People living with disability aged 35-54 were incarcerated at twice the rate of those without disability.

Such statistics have led to the creation of a new online resource aimed at teaching people working in Victoria’s legal system about disability. It includes support on how to recognise the signs, how to learn effective communication strategies and how to refer people to support services.

The Supporting Justice website was developed by RMIT University’s Centre for Innovative Justice (CIJ) after 12 months of consultations with people from across Victoria's disability and legal sectors.

“People in the justice system don’t recognise or understand people with disability. They don’t provide people with the right support when they need it,” CIJ associate director Stan Winford said.

“We know it is very important people address issues before they reach the prison system. Early intervention is critical.

“We need to connect people with the right support at the right time, and we hope our resource will enable that to occur when people come into contact with the courts and police in the first instance.”

The website also aims to help people with disability and their supporters learn what legal support exists in Victoria - where it’s estimated 42 per cent of male prisoners and 33 per cent of female prisoners have an ABI according to the state government - and how to find out what their rights are.

The Supporting Justice website was created after a year of talks with people from across Victoria's disability and legal sectors.

Centre for Innovative Justice

Claudia said extra guidance during her time in the justice system would have been helpful.

“I can’t help but feel, early on, had I been asked some very simple questions and perhaps been directed to some help, my life would have turned out very differently than it did,” she said.

"Being able to have someone learn about how to communicate with me, that [would have] made a world of difference.”

Changing the approach

The care of people involved with the law is a state responsibility but there are some federal government initiatives aimed at reducing the over-incarceration of people with disability.

Around 10 per cent of government-funded advocacy support addresses legal and justice issues each year, according to the Department of Social Services.

“The Morrison Government provides $24.5 million a year under the National Disability Advocacy Program to support people with disability access effective advocacy that promotes and protects their human rights,” a spokesperson for Social Services Minister Anne Ruston told SBS News in a statement.

“This includes support for legal issues and dealing with the justice system, and may include supporting people with disability inside prisons.”

Mr Winford said reducing disability incarceration will not hinge on support funding, but rather, tweaking the approach.

“What we need from government around the country, is to be much more person-centric,” he said.

“All of these parts of the system need to work together to address the needs of the person rather than bouncing them between services, and losing them between those services, or allowing them to fall through the cracks because no one is taking responsibility for their personal needs.”

“We need to change the system [and] focus on the needs of the person, not the needs of the criminal justice system.”

Though Claudia’s battles with homelessness continued after her release from prison, through her own persistence, she secured a place in a social housing development where she has been living for nearly nine years.

From this base, she has been using her personal experiences to advocate for more recognition of disability inside the justice system.

”There is a real over-representation of people with disability in the criminal justice system, namely in prison,” she said.

“I have got to see with my own eyes and meet lots of other people who are invested in helping other human beings, but we need help.”

*Name has been changed

www.sbs.com.au/news/why-australia-s-prison-system-can-be-terrifying-for-people-with-an-intellectual-disability