Shawn Burns and his wife Gina are determined that their son, Mac, will not be defined by his cerebral palsy. Picture: DAVE TEASE
Don't call Shawn Burns a carer.
His young son, Mac, may have cerebral palsy and use a wheelchair, but Burns is not a carer. He’s a father.
‘‘I care for my son in the same way as any father would care for his son,’’ Burns said.
And don’t make the mistake of calling Mac ‘‘wheelchair-bound’’. That would really raise the hackles.
‘‘It’s like saying someone who uses a car to get back and forth from work is ‘car bound’,’’ Burns said.
‘‘A wheelchair is a piece of equipment that people use to access their life.
‘‘To describe someone as ‘wheelchair-bound’ is seeing them as nothing more than this piece of equipment.’’
Burns is the acting convener of the journalism program at the University of Wollongong and studied the way the media treat disability as part of his masters research.
His interest came as a former journalist and press secretary, as well as the father of Mac, a boy was was born four months premature and weighing just 500grams.
Burns and his wife, Gina, decided early that Mac should lead as normal a life as possible. They send him to the local school and want to break down the stereotypes.
‘‘I found disabled people were either seen as heroes or tragedies,’’ Burns said.
‘‘I think people-first language is important. There are people who have disabilities, rather than being just disabled people.
‘‘We should see them as people first rather than as disabled first. Disability is something that people have, it’s not what they are.’’
Burns is a forceful advocate for a shift in attitudes and his views are typical of a quiet revolution in disability over the past 20 years.
Proof of this is the federal government scheme announced earlier this month that transforms the ways disabled people receive benefits.
Under the National Disability Insurance Scheme, disabled people will receive vouchers which they can spend with a provider of their choice, rather than the current scheme were they are passive – and often powerless – recipients of largesse.
Minister for Disability Reform Jenny Macklin said the scheme would start next year.
‘‘It will see people able to exercise choice and control over the care and support they receive – many for the first time,’’ she said.
The scheme is a huge improvement from 1976, when Cassie Hassall was told in year 9 that she had a disease that would send her blind, and that she had no hope of a productive life.
‘‘They said I wouldn’t want to go on further at school because my sight was going to deteriorate,’’ she said.
‘‘I wasn’t going to be able to do any further study, and I was told the best thing was to get a job and keep it as long as I could. Then it would be the blind pension.’’
So she left school in year 10 and got a job in a shoe shop that she hated, but she stuck at it because she assumed that was all she would ever have.
After a few casual shifts, she started work in a club and loved it, using various strategies to conceal the fact that her eyesight was too poor to read standard type, use the cash till or even see the detail of customers’ faces.
‘‘The first thing I ever knew about it was when I looked up to serve somebody and there was only one person at the bar and I asked what he would like,’’ she said.
‘‘He kept looking over his shoulder. I didn’t know that I had what they call ‘eccentric viewing’ that I didn’t look right at people. That was the first time that anybody reacted like that.’’
One of the hardest situations is still in busy shops such as sandwich bars where she never knows if the person serving is looking at her. Hassall has no peripheral vision so she must look directly at the person behind the counter if she wants to be served.
To look at Hassall, who now coordinates volunteers for Vision Australia in the Illawarra, you would never know she was vision impaired. And there’s the problem.
There was the time when she travelled to Melbourne and became confused with the laneways. She thought they were driveways and walked out in front of a car and copped abuse from the driver. Another time, she asked a cranky bus driver if he was going Woonona and he told her to look at the front of the bus.
So, increasingly, she has swallowed her pride and walks with a white cane. The cane lets people know that her vision is severely limited.
On the day we meet she is learning how to use a longer white cane that taps the ground for obstacles and searches for navigation aids – walls, steps, and those raised dots known as ‘‘tactile ground service indicators’’.
Hassall is one of a team of people with disabilities who are advising Wollongong Council on issues such as the importance of clear pathways along walls in the city centre. Too often, businesses clog up pavements with A-frames, tables and chairs or clothes racks.
Also on the committee is Arthur Gordon, a former steelworks manager whose life changed, in an instant, when he went body surfing with his nephew at North Beach, Wollongong, in 1998.
‘‘I went down to buy some papers and then saw my nephew, so I went for a swim,’’ Gordon said.
‘‘I was in the water for half an hour when a wave caught me and flipped me. My head was driven into the sand.
‘‘I knew immediately there was something wrong.
‘‘I can remember flashes. I can remember lying on my back in the sun. I can remember being in the ambulance. I can remember the helicopter going up to Sydney. That’s how it was – little pictures.’’
The next 11 months were spent in hospital, recovering from severe bruising of the spine, and when he came out he could move everything a little (he can even stand, with difficulty), but nothing works properly.
Everything changed. He and his wife, Dorothy, had to move out of their house in Cordeaux Heights to a single-storey house on a level block in West Wollongong.
Although Gordon is blessed with the pragmatic stoicism of a Scot, it is clear the injury has placed great strain on his marriage and on his outlook on life.
Travel has become difficult and needs extensive planning to ensure that he has someone to get him out of bed, to toilet and shower him, to cook for him.
His wheelchair is too heavy to lift (it weighs 120 kilograms) so even the smallest step is as big a barrier as a brick wall.
‘‘Restaurants are the greatest ones for saying they are accessible, but they just don’t understand. We have a list at home of the ones that are genuinely accessible,’’ Gordon said.
Now 70, Gordon describes himself as in the twilight of his life, and is flummoxed when asked what plans he has for his own life. His dreams are now in his children and grandchildren.
‘‘There are not a lot of positives,’’ he said.
‘‘Some people seem to make a real go of it, but maybe it’s because it happened late in life for me that I can’t.’’
Gordon tells the story of one man in an electric wheelchair so filled with despair that he tried to kill himself.
‘‘He took himself down to a boat ramp into the river to try and drown himself.
‘‘Of course, when the water hit the motors it just stopped and he couldn’t get any further and he couldn’t get back out.
‘‘I don’t know if that’s true or not.’’
There’s a wry smile on his face but a sad look in his eyes, so it’s hard to figure if the story is told as comedy or tragedy. Though no-one pretends that disability is easy, and can lead to despair in more extreme cases, many of the problems arise not from the disability, but from how others respond.
Whether it’s someone tripping over a wheelchair and then blaming the user (‘‘It happens,’’ says Gordon), cafes clogging up pavements, or inaudible train announcements, it ultimately comes down to awareness.
One of the reasons that it has taken Cassie Hassall half a lifetime to take up a white cane is that she wants to be treated like anybody else.‘‘I don’t like being felt sorry for,’’ she says.
‘‘I don’t like that because there is no reason to.’’