Up to one in five people have some sort of disability and for every person who has a profound disability, many more are affected. While community access and attitudes have changed in the past decade, for people living with a disability there is still a long way to go, writes Neelima Choahan.From a strong, powerful woman to someone who struggles to walk even 20 metres, former electrician Gail Fiander has watched herself slowly decline.
Diagnosed with fibromyalgia in her 20s, the Ballan resident started developing pains and aches in her joints when she was in her teens.
‘‘I had been told since I was 15 that I had growing pains,’’ Ms Fiander says.
But when the ‘‘growing pains’’ stayed long after Ms Fiander had grown up, doctors finally realised something was wrong.
‘‘I had just finished my electrical apprenticeship so I had been doing strong physical work,’’ she says.
‘‘I was doing two styles of martial arts — Tang Su Do and taekwondo — so I was training seven sessions a week.
‘‘I went from being a strong, powerful woman to being tired and weak. I was in a lot of pain and I couldn’t lift things.’’
Yet, the 39-year-old says she didn’t let the chronic condition, which causes pain, stiffness, and tenderness of the muscles, tendons, and joints, get her down.
Changing careers to accommodate her physical limitations, she turned to teaching trade at a TAFE.
‘‘I love working,’’ she says. ‘‘I don’t know how not to work.’’
However, Ms Fiander says that since being confined to the wheelchair a year ago, finding a job has become harder.
‘‘People don’t know what a person with disability can or can’t do,’’ she says.
‘‘And instead of talking to the person, they just make assumptions that you can’t do anything.”
The mother of one says people are often condescending, treating her as if she is ‘‘mentally retarded’’.
‘‘I think some employers are afraid of people with disability in the workplace,’’ Ms Fiander says.
‘‘My muscles are weak; my brain capacity and intellect are not affected by the disease at all.’’
Christine Walton, Australian Disability and Development Consortium executive officer, says society must understand it isn’t the people with the disability that are the problem, but the world they live in.
A long-term advocate for improvements in the sector, Ms Walton says disability is a given in any population.
‘‘The problem is the artificial barriers that are put in place, whether be it accessibility, policy or attitudinal,’’ Ms Walton says.
‘‘If you can remove the barriers then the people with disabilities don’t need to be handicapped because they have a disability.’’
Moorabool Disability Forum group president John Ginnane says things have changed a lot since he became a quadriplegic 35 years ago.
The Bacchus Marsh resident dislodged a vertebra and pinched a spinal cord in a diving accident when he was just 24.
Married and a father, Mr Ginnane fought hard against the prevailing attitudes to gain independence and employment.
“Back in those days, a lot of people [with
disability] stayed inside. They weren’t that outgoing,” Mr Ginnane says.
“The facilities or accessibilities were never there. Everywhere you went there was hassle. There wasn’t any attendant care in those days.”
One of the pioneers in helping shape government policies, Mr Ginnane now helps people navigate their way through the maze of government services and funding that’s available.
“It is not unusual to get three people [asking for information] in the week,” he says. “They are lost.”
Every Australian Counts state campaign co-ordinator James O’Brien says for too long people with disability have been left to do it on their own.
“People with disability really aren’t getting the support and care they need,” Mr O’Brien says.
“There are significant levels of unmet needs right across the country.”
That is why Mr O’Brien and his organisation are pushing for a National Disability Insurance Scheme (NDIS). The scheme would provide a dedicated pool of funds to support people with disability as well as their families and carers.
The proposal’s feasibility is being examined by the Productivity Commission, an independent statutory authority, as part of a broader inquiry into disability support and care.
Mr O’Brien says the whole community has a role to play to support their fellow citizens with a disability.
“Disability is quite prevalent within the community,”
he says.
“Up to one in five people have some sort of disability and for every person who has a profound disability, there are many, many people who are affected.
“Disability is remarkably random and can strike at any time of a person’s life – regardless of your background, ethnicity or where you live.
“And as the population ages, the instances of disability increase.”
Mr O’Brien says people with disability have missed out for decades on being socially and economically included in a community.
Costed at $6billion, NDIS would not only free up families and carers to go back to work but also allow many people with disability to access work, he says.
“This reform really does make strong economical sense,” Mr O’Brien says.
“There are a lot of families and carers who can’t go back to work because of the day to day demands of looking after a loved one.
“Imagine if those people could come back into the workforce?”
Mr O’Brien says even if a small proportion of people with disability could get back into the workforce, it would mean less expenditure on disability support payments, greater tax receipts to the government and increased spending in the economy.
“It really does recognise the potential of people and it will unlock people’s productivity,” he says.
“People with disability want to contribute, they want to be socially included, and they want to work where they can.
“All they need is a little bit of assistance.”
Ray Drew
RAY Drew’s life changed forever when at 18 he was electrocuted while trying to change a lamp bulb.
He was left with an acquired brain injury and is now blind and suffers from short-term memory and epilepsy.
Now 56, the active drama and music teacher has lived at Scope Victoria in Glenroy for the past 13 years and now uses a wheelchair.
Mr Drew says while his life changed completely that day, living with a disability has gotten easier as time passes.
He is a founding member of Rawcus, a group for performers with and without disabilities, which allows him to indulge his passion for drama and music.
‘‘I like performing in plays. I have always enjoyed drama. I’m a bit of a show-off,’’ he says.
Mr Drew also likes to go to the opera, listen to music and support his AFL team, Essendon.
He relies on the help of his carers for day-to-day activities including taking showers, getting dressed and going places.
Mr Drew’s message to people living with disabilities is simply to get on with life.
‘‘Try to get your life back in order. If it happens to you it doesn’t mean it is the end of your world.’’
Acting co-ordinator at Scope Glenroy Rosa Leon says Mr Drew’s an example of someone who keeps busy and tries to continue with life.
Not long after his accident he was horse-riding and swimming and his activity levels have been reduced only during the last six years due to his epilepsy.
‘‘He does the things he likes,’’
Ms Leon says. ‘‘Ray has a good quality of life with his drama involvement. He goes places, keeps busy with rehearsals.’’
GETTING ABOUT
Number wheelchair accessible taxis licenses:
Metropolitan: 302
Country: 112 Outer suburban: 29
Total number of Disability Support Payments,
based on Federal electorates: 757,853
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