Don’t box us in

Sydney’s Martin Place became the scene of a social statement yesterday when a young man in a wheelchair spent two hours in a giant perspex box to raise awareness about young people living in aged care.

Above: Martin place, Sydney, lunchtime, yesterday: The perspex box erected to prove a point- that young people don’t belong in residential aged care

By Yasmin Noone

Every weekday at lunch time, Martin Place in Sydney’s central business district teems with the midday rush – a storm of black suits throng the closed pedestrian zone amid fruit stalls, newstands and if you are lucky, a busker or two.

Yesterday however, the bustling business hub had a different focus.

Placed smack bang in the centre of the popular place was a 4.8 by 3.6 metre giant Perspex box containing a young person in a wheelchair, an older woman in her dressing gown and her ageing husband, a bed and a few decorative bits and bobs.

Surrounded by workers and tourists alike, the goings on could very possibly have been a practical joke, a trendy film shoot or a political demonstration.

What ‘it’ was however, was a cry for help and a call to the Sydney and broader NSW community to act now to get young people out of residential aged care.

Thirty-seven year old  wheelchair user, John Tassone, spent two hours inside the box alongside one older couple during Sydney’s lunchtime peak to shine a spotlight on the fact that right now, 6,500 young Australians are living in aged care, simply because there are few other options.

The box, a recreation of an aged care resident’s room, was part of a Youngcare publicity stunt, organised to get passersby to stop and take notice of the issue.

“The box gave people, I guess, a glimpse into the life that 6,500 young people are living around the country,” said CEO of Youngcare, Marina Vit.

“It got people to stop and think about whether the scene looks ‘right’.”

The box aimed to portary the cultural mismatch between the different generations living in residential aged care.

Although residential facilities, Ms Vit said, can be a wonderful place for older people, the point the organisation wanted to make is that it is not the place for young people to live.

The Hon. Andrew Constance, NSW Minster for Disability and Minster for Ageing shows his support for young people in aged care

“[Our cause] is about providing younger people living with a disability with the choice to live where they want to and to ensure that they continue to lead a ‘young person’s life’” Ms Vit said.

“[The event] got people to express their views with paint and pens on the outside of the box and show their support. It attracted a great mix of people. Old and young alike could see that there was an issue with young people being in aged care.

“It successfully made the point [that young people don’t belong in residential aged care] in a very public forum.”

The event also marked the QLD-based advocacy and policy group’s Sydney launch and demonstration that the organisation is dedicated to national and NSW-based issues.

“The issue of young people in aged care is a national one and it’s really important that we put it on the national agenda.
 
“It’s also an issue that most people [in the community] aren’t aware of but it’s happening in suburbs around Australia.”

GIO Insurance Australia participated in the event yesterday and donated $100 000 to Youngcare so it can build its first housing project in Sydney.

The NSW Minister for Disability and Ageing, Andrew Constance, also attended the event and showed his support for the Youngcare cause.

Considering the cause, “it was the least I could do”

Mr Tassone, who was diagnosed with quadriplegia 22 years ago, volunteered to participate in the event in order to raise community awareness about the need to not only get young people living in aged care out, but to build more age-appropriate accommodation for young people with a disability, like himself.

As Mr Tassone said, although he is incredibly grateful for the care, accommodation and support provided by his family at home, he would like to move out and live independently.

After all, he stated, he has the same needs as any other young person and given the fact that he will be married next year, he would like to move into an appropriate home of his own and out of his parent’s house very soon.

“I still have a bit more freedom than someone living in an aged care home but there are a lot of different restrictions I do have,” Mr Tassone said. 

“Living at home with ageing parents is a struggle…Early on, they could deal with [providing care] as I guess they were a bit younger but they are now in their mid-60s and are struggling.

“Living at home [in a house that is not purpose-built for my needs], you also get restricted as there are things that you, as a young person, can not do. It’s not as independent or as private as it would be if you were living in your own apartment.

Above: Hon. Andrew Constance, NSW Minster for Disability and Minster for Ageing; Chris McHugh, GIO executive general manager commercial insurance; Carol Williams, Youngcare supporter; John Tassone, Youngcare advocate (and West Tigers fan); and  Marina Vit, Youngcare CEO.

“If you have friends around all night you get into the situation where you feel guilty as you may be keeping your parents awake.

“And I have a fiancé and we want to get married next year and live independently together. Living at home makes you feel restricted.

“…I understand that about 6,500 young people live in aged care facilities but there are a lot of others in a similar situation as myself, living at home with ageing parents.

“I’d like better living arrangements where guys and girls can go to live a more independent life without having to worry about being stuck in bed, waiting for care [to arrive at your door] and to live as close to a normal life as possible.”

Mr Tassone said that sitting in a box in Martin Place for two hours “was the least” he could do for Youngcare and their cause.
 
“It was awesome to see people walking past the box, dropping in, having a chat and writing on the box about what they feel needs to be changed.

“I know the aged care community gets looked after and deservedly so. But sometimes the younger side of the community, particularly those with high care needs, get forgotten, or are not as well looked after.

“I was really heartened to see that so many [passersby] got behind us. They thought the box was strange at first…but they just wanted to know what I’ve been through. I explained that as a quadriplegic, I was not able to do much and what had happened to me.”

In a perfect world, he said, the government would recognise there is a problem and work together with organisations like Youngcare to build age-specific accommodation for young people with a disability.

But until that happens, if it ever does, Mr Tassone’s message to government is “to open your eyes and look after the young”.

“There are so many young people that need help. And it’s not just those with disabilities but their families who struggle as well.

“I’ve lived with a disability at home for 22 years and watched my family struggle watching what their son is going through.

“I’d like the government to do more to help out young Australians with a disability and their families too as well.

“I just hope the government can look around and put themselves in our shoes for one day.

“…They can make a difference now and not in six years time. It’s really important to look after young [disabled] Australians, as well as ageing Australians.”

Tags: andrew-constance, disabilities, disability-and-ageing, gio-insurance-australia, marina-vit, martin-place, residential-aged-care, young-people-in-aged-care, young-people-with-disabilities, youngcare,

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