Ausnew Home Care | Living regionally with a disability is a challenge,

Living regionally with a disability is a challenge, but the community support is invaluable

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A morning routine eye appointment at my local optometrist when I was 14 changed my life forever.

Swelling on the optic nerves at the back of my eyes uncovered a blockage in the centre of my brain — an inoperable tumour that was causing severe swelling and an immense build-up of pressure inside my head.

By the afternoon, my whole family had packed the car and rushed to Sydney, a four-hour drive from the tiny country town where we lived.

We made it there in three and a half.

By the evening, I was in emergency surgery at the Sydney Children's Hospital, amidst a flurry of frantic neurologists, hurried scans and extremely anxious parents.

A young woman in hospital hooked up to machinery. Ausnew Home Care, NDIS registered provider, My Aged Care
Undergoing brain surgery has become an accepted part of Susie's life. (Supplied: Susie Alderman)

Over the past 10 years I've repeatedly been in and out of hospital, often travelling long distances to access specialist treatment and services.

With eight brain surgeries under my belt so far, the physical and mental disruption to my life has been nothing short of a rollercoaster.

I now live with a shunt, which is a tube implanted inside my brain that essentially keeps me alive.

Susie Alderman stands in front of an artwork.
Susie Alderman has had eight brain surgeries since being diagnosed with a brain tumour.(ABC News: Dianne King)

International Day of People with a Disability, on December 3, raises public awareness, understanding and acceptance of people with a range of disabilities, both visible and invisible.

The challenges faced by people living with disabilities are unique and broad and are often hard to explain or articulate to people who are living without them.

Our small country community made sure my life with an ongoing illness was as easy as possible.

Our family's first stint at Ronald McDonald House (RMH) in Sydney lasted around seven weeks.

We received countless food and grocery deliveries organised by family friends.

The Cootamundra Rugby Club raised thousands of dollars, which was used to help refurbish the rooms at RMH.

Each class from the local central school wrote letters of support and best wishes and sent handmade decorations which adorned the walls of my tiny hospital room.

Living in the NT

Understandably, when I recently decided to move to the Northern Territory my mum didn't get much sleep until I'd found a brain surgeon on speed dial and established a comprehensive emergency plan.

While living in the Northern Territory, I have witnessed first-hand the challenges associated with living with a disability in a regional area, and I have drawn many comparisons to my experience growing up in a small country town in New South Wales.

Susie Alderman and Paul Johnes talk at a table in an office.
"You just have to live that life and stay as positive as you can," Paul Johnes says of living with a disability.(ABC News: Dianne King)

Life in regional Australia can be harsh, isolating and demanding.

Disability rates are higher in rural and remote areas of Australia, with 23.1 per cent of people reporting some form of disability compared to the reported 16.4 per cent in major cities.

For those living with disabilities and illnesses, access to services and treatment can be arduous and extremely disruptive to everyday life.

However regional centres offer a sense of community which can significantly influence the experience of someone living with a disability.

This invaluable support is often unmatched in larger cities and can positively shape a person's sense of belonging and attitude towards disability.

The Territory is a unique and inspiring place, with people who are open, supportive and very welcoming to newcomers like Paul Johnes who lost both of his legs to diabetes around five years ago and has needed a wheelchair ever since.

Paul Johnes looks at the camera in front of a tropical garden.
Mr Johnes says the support of the Darwin community has had a significant impact on his life since losing both legs.(ABC News: Che Chorley)

Despite living in a regional part of Australia, Paul has found positive ways to embrace life in a wheelchair, and has fully immersed himself in the supportive community that surrounds him.

While Paul and I both have lived very different experiences of disability, it is the strong appreciation of our communities that unifies our perspective.

Now running classes in woodworking, Paul has found ways to connect with his community, which in turn has shaped his positive attitude towards life with a disability.

Since moving to Darwin, Paul has noticed a significant difference in the way people in regional centres approach and respond to his physical differences.

In being embraced by the community, Paul feels that his experience of having a disability, on the whole, has been a positive one.

"Disability is just a thing a person has got. You can't take it away, it's just something that happens … you just have to live that life and stay as positive as you can," he says.

"You've just got to get on with life and live it."

My own experience has taught me that having a sense of community is what unites us and gives us hope during challenging and uncertain times.

My attitude towards my disability is one of great optimism and ambition, and my achievements in life so far can be greatly attributed to the support networks which have guided me along the way.


Source: ABC

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