WITH SOUND - linkonline.com.aulinkonline.com.au › ... › 24 › link_21_4_2012_october.pdf · journey to recovery 32 Disability art is celebrated at the SALA Festival 34 Bill Moss

OCTOBER 2012 | Volume 21 Issue 4

SEEINGWITH SOUND

MENTAL HEALTH IN FOCUS

ACCESSIBLE ART MAKES A SPLASH

FOOD, TRAVEL, ENTERTAINMENT

& MORE!

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Stop typing, start talking and get the recognition you deserve

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Dragon can also be used as an assistive technology for the physically impaired and those with language and speech impairments. Ideal for students with learning disabilities such as dyslexia, dysgraphia and working memory issues, Dragon will generate new excitement for writing and learning.

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Cover story

12 Chris Finnen, left, Angela Schiller and Tony Doyle are musos with vision impairment.

12

Cover photo: James Elsby.Some images throughout the issue are courtesy of stock.xchng.

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October 2012 — Vol 21/4 linkmagazine 3October 2012 — Vol 21/4 linkmagazine 3

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21

40

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4 Ed’s letter

5 Your letters

8 Link news bites

11 A bike ride from Shanghai to Dublin raises awareness

16 Gaming for the vision impaired

18 Vanessa Waller on being a “wheelie” travel writer, plus other travel news

21 Food glorious food, from a recipe to a review

25 Dignity for Disability MLC Kelly Vincent’s column

26 New products

28 Accessible Arts has developed a network so visual art studios can connect up

30 Author Karen Tyrrell on bipolar disorder and her journey to recovery

32 Disability art is celebrated at the SALA Festival

34 Bill Moss AM is behind the memoir, Still Walking

36 Applications open for SA’s Sir Charles Bright Scholarship Trust

37 Moving extract from The Will to Live, The Courage to Die

40 Different beats with Anthea Skinner

43 Books

45 Breakthroughs

46 The musings of Peter Coulter

47 What’s on

48 Subscribe to Link

11

4 linkonline.com.au October 2012 — Vol 21/4

from the editor

Having short-sightedness – seeing near objects clearly, but distant objects blurrily – is both a blessing and a curse.

On the one hand, it can mean avoiding people I know out of ignorance. I can’t help it if I didn’t actually see them crossing my path! On the other hand, outings to concerts or movies aren’t much fun if I forget to take my glasses.

Of course, any challenges I face are minor compared to two people featured in our cover story on vision impairment – one relying on her peripheral vision and the other being totally blind. Not that they’ve let this get in the way of pursuing their passions.

This issue, we’ve also put the focus on mental health with World Mental Health Day on October 10. Happy reading!

Carla Caruso, Link editor

Do it for Dougie

Tutti artist Dougie Jacobssen, who has cerebral palsy, again completed Adelaide’s City-Bay fun run in his wheelchair in September – carrying his Do It for Dougie sign all the way. Tutti is a nationally acclaimed multi-level arts organisation, offering professional development to artists with a wide range of disabilities. Funds he raised will go towards young artists with disabilities and the Tutti Choir. Photos: Pavlos Soteriou.

• Young South Australian Kirsty Arnold has launched a blog, Unspoken Conversations, to help break down the silence about depression and mental illness. Started in June, she’s already had about 9000 views. unspokenconversationsbykirstyarnold.blogspot.com

• The inaugural Zip It for Mental Health campaign invites people to donate their voice for 24 hours on October 10 to turn up the volume on mental health in Australia. Participants will help raise funds for Black Dog Institute, headspace, Lifeline and Suicide Prevention Australia. zipit.org.au

• Adelaide’s Raymond Zada has won the $4000 work-on-paper prize at the 29th Telstra National Aboriginal and Torres Straight Islander Art Awards. His digital composition, Racebook, was a response to racist comments posted in two Facebook groups targeting Indigenous Australians. The image represents the artist’s purging of the hateful comments while raising awareness of the attitudes being expressed in social media. Raymond next works on a new collaboration with No Strings Attached Theatre of Disability.

Bowled over

Share your views and read about all things disability-related at facebook.com/linkdisabilitymagazine.

In brief

Twin Samuel also competes.Travis Elsby scores a strike at the

Special Olympics ten-pin bowling

state games in Adelaide in May.

October 2012 — Vol 21/4 linkmagazine 5

letters to link

Winning letter – too late for daughterAs a man who held his daughter while she died after waiting for a liver transplant, because too few people ticked this important box or, if they did, had their wishes overturned, I would be more than willing to suggest that there is a strong case for making this an opt-out rather than an opt-in situation for every license holder and to remove the ability for others to overturn the wishes of the donor. She was only 372 days old.

You would be shocked to hear how many children and people of all ages that die every day

because we have a fl awed system that allows more people to need transplants than are available forcing doctors and surgeons to decide who gets an organ and who has to wait.

I have no arguments if someone chooses not to be a donor because of religious or personal views and they should be given the right to opt-out, but the biggest problem is people are uninformed as to the consequences their not choosing may have on those who would use their gift. It was too late for my daughter and I hope you never have to watch someone you love die because of someone else’s lack of consideration. – John Millar

AUGUST 2012 | Volume 21 Issue 3

KATHY LETTE’SNEW BOOK

GET SET FOR THE PARALYMPICS

READER SURVEY: SHARE YOURVIEWS & WIN!

ORGAN DONATION IN THE SPOTLIGHT

Rather than the usual letters this week, we asked for your views on organ and tissue donation following our cover story last issue and got a variety of responses, as below. In 2007, all states, except for NSW, agreed to cease their driver’s licence donor schemes in favour of a national organ donor register. It’s administered by Medicare on behalf of the government.

Steven Cavallo, who had a double lung transplant, featured in our August issue. He’s with wife Nicky, Massimo, 7, Marco, 4, and Martina, 10 months, in Adelaide. Photo: James Elsby.

Payment for organs

I have chosen to tick [organ donor], but I actually believe there needs to be a campaign to end the whole idea of donors and actually pay people for their organs. I believe this would lead to a huge take-up and is only fair that families be compensated a fair and reasonable amount. It just seems illogical that when we die, we have to pay for a funeral, pay often for solicitors and all kinds of other expenses, yet we are expected to give away extremely valuable assets like organs.

Why should organ donation be a gift and not a fair value sale? Just because people are afraid that the system could be exploited? The minute

life back to compensate. It is not too much to ask.

By the way, if we don’t change our laws and standards, we are by default supporting the organ transplant tourism industry, where it is highly likely that organs might be being harvested from innocent detainees and executed political prisoners. It is essential that we maximise every possible opportunity to harvest organs ethically and legally within our own population, under our own laws and jurisdictions. – Stefan Sojka

Second chance at life

I’m a big fan [of organ donation] and, when I lived in the UK, I had an organ card. We used to get separate donor cards rather than it being on your driver’s license [like in NSW]. I’d love to be able to donate my organs, but because I want to be buried at home with my family [in the UK], I’m unsure how that works… There are so many people living over here whose parents live in a different country. It would be good if it could be made clear what happens.

chance of that happening would be far outweighed by the massive increase in organ supply and the huge fi nancial benefi t that families would get in a time of grief, when everyone is trying to take a piece of them – funeral directors, solicitors AND doctors.

There needs to be at least a third box – ‘I choose to offer my organs for sale after I die’ – and let people choose. I believe that with just two choices – donate or don’t donate – it is no wonder organ supplies are so low.

I also believe that anyone convicted of taking another person’s life should at least agree to become a blood donor, if not, for more horrifi c crimes, a few non-essential organs. Simply put, if you take a life, you can give

Twin Samuel also competes.


link | letters to link

[With the donor register going national] it could be one of those things that you say ‘yeah, I want to do that’ and then never get around to fi lling in. I know one of the things they were also really stressed about in the UK was that if you signed up for a donor card, you must make your family know, because I think they get the fi nal say.

I would say [more education is needed]. What would work as well in a promotion is if they said, ‘Yeah, we do take your bits, but we stitch you back up again and make you look normal!’… [Organ donation] does give those people that second chance at life, and I’m a big believer that once you die, you’re dead and your spirit goes away. Your body’s just a shell. It’s almost like a house. You want to give away your furniture once you’re fi nished, because you’re not using it anymore. – Lisa Phillips, life coach, amazingcoaching.com.au

Tragic accident helped another

When I was 24, my husband of fi ve months died suddenly in a tragic accident. If an organ could have saved his life, I would have been eternally grateful to a donor. This was not an option. However, I did give consent for his organs to be used in any way that could be useful to others. I would also want to donate mine if they could benefi t others. I’ve ticked the ‘donor’ box on my license and communicate my wishes to my family. – Liz Dore

Not much for the lived-in look

I ticked both boxes and so will donate both tissue and organs. I’m a healthy 45-year-old and I take care of my body (I’m not much for the

lived-in look), which is my choice. I would willingly accept an organ if I, or someone I loved, needed one. It, therefore, follows that to receive there must be organs available. So I ticked the boxes and have made my family aware of my commitment. To improve the quality of someone else’s life if yours could not continue, what a gift. What I struggle with most is that my husband would be asked to confi rm my choice and could over-ride my decision if he doesn’t agree with it at the time. Perhaps another article? – Jennifer Burrows

The gift of health

Yes, I have chosen to be an organ donor. I’ve always had this view, but when I underwent serious stomach surgery in my mid-twenties, it gave me a real sense of the impact that transplant donors can have. (I did not receive a transplant myself.) I’m also an atheist, so hold no spiritual attachment to what is done with my body after my death. I can’t think of anything more meaningful to give someone than the gift of health, or even life. – Nicola Morgan

Think of the kids

I have opted to be an organ and tissue donor on my license, but unfortunately this doesn’t actually add you to the Australian Organ Donor Register. Thus, I’ve also registered offi cially through Medicare. It would be great to ensure people know this if they do wish to be donors.

I work at The Children’s Hospital at Westmead and organ donation is obviously high on our agenda. I completely appreciate the diffi culties that surround the decision for a lot of people, but I regularly see the benefi ts of organ donation and

the way it completely transforms a child’s life. And I also unfortunately see the struggle for the children – and families – who are waiting, or even worse, aren’t fortunate enough to receive one in time.

This was instrumental in my decision to change from being a donor of ‘some’ organs to all organs and tissues and I’m a HUGE advocate for signing up to that register and letting all and sundry know about the decision. – Vanessa Gambin

Family affair

I have four children who are all proud to be on the organ donor registry. It doesn’t cost us anything and hopefully my husband and I will never have to sign a permission form for our children’s organs, because that means a terrible tragedy for us. But the fact that we’ve made the decision, if the worst ever happens, will make that time easier... It was not a hard choice for me to make – if I can’t use my organs, why on Earth should someone else not use them instead? Some people think it’s against religious beliefs. Now I’m not much of a churchgoer, but I believe that God gave humans the intelligence and the tools to work out how to prolong a sick person’s life and I’m all for that. – Chris

By contributing a letter you authorise Link to publish it in the magazine or www.linkonline.com.au. Letters may be edited for length and clarity. All published contributions earn the author a free copy of the magazine, containing the letter (or current subscribers may specify that they would prefer their free magazine as an extension of their current subscription), provided a postal address is included with the original letter. Your name, suburb and state will be published with your letter unless you specify otherwise.

Send your letter to the editor:Link, Inprint Design, 1B Laff er Drive, Bedford Park SA 5042 or email it to [email protected] Please include your postal address (not for publication). The best letter wins $50



news bites

Having a baby or toddler is expensive and tough enough, but for those who have a child with a disability the challenges and costs are greater, leaving many parents unable to even consider providing the all-important developmental therapy their children require.

However, a unique program in Queensland called Baby Bridges now ensures these families can not only access developmental therapies but also get support for free. Starting just south of Brisbane only a year ago, the Baby Bridges program grew out of the non-government disability organisation, the Horizon Foundation, when it became clear that there was little or no support available for parents of children with a disability during the infant and early toddler years. Each program caters for up to 10 children in one session and includes playtime, speech therapy, hydrotherapy and music therapy, while their parents enjoy a group information session close by. It is hoped that the scheme will develop further across the state. babybridges.com.au

UNIQUE CHILDREN’S DISABILITY PROGRAM PROVIDES ESSENTIAL SUPPORT TO PARENTS

Seventeen years ago, John Ring suffered serious damage to his hands and arms as a result of a workplace accident with a printer.

Through a return-to-work program with CRS Australia, a Federal Government department which provides employment and assessment services to people with a disability, injury or health condition, John was offered a job at Aegis Australia after completing the Aegis Aspire program.

Aegis recognised by Federal Government for its commitment to people with disability

John began his career with Aegis as a call centre agent before being offered a secondment opportunity as a trainer. He has now been permanently placed in this role, including spending eight weeks in Aegis’ Manila centre training employees.

Aegis has been rewarded for its work with John and other employees with disabilities by winning the Federal Department of Human Services Partnership Achievement Award, Victoria and Tasmania, for its commitment to training and employing staff with a disability. aegisglobal.com


New Perth home for national disability job access service

The WorkFocus Group opened its new JobAccess offi ce in Herdsman, Perth, in July. JobAccess is a national disability employment advice and support service, administered by the WorkFocus Group on behalf of the Australian Government.

The service gives employers information and support about employing people with disability, including mental health conditions, and ultimately helps people with disability get work or stay in work.

Minister for Employment Participation Kate Ellis, below, attended the celebrations and offi cially declared the offi ce open in front of an audience of Perth employers, service recipients and employer groups. jobaccess.gov.au

SPORT NEWS

Jobfi nd sponsors Wheelchair Sports NSW

Despite gale force winds and heavy rain, wheelchair athlete Richard Engles and the team from Wheelchair Sports NSW successfully completed the Sun-Herald City2Surf in August, sponsored by Jobfi nd Centres Australia and the Angus Knight Group.

It was Richard’s fi rst attempt at the 14km race. “The hills were tough, but the fi nal 4km were mostly downhill, so that helped a lot,” enthuses Richard, who was born with spina bifi da.

The former tennis player now plays in the National Wheelchair Basketball League for the Sydney University WheelKings and hopes to one day represent Oz in the men’s team.

Photo R: Richard Engles, a member of Wheelchair Sports NSW, after completing the City2Surf.

SENIOR NEWS

‘Rusty’ memories could be restored among elderly

The forgetfulness that accompanies ageing may be able to be reversed – in mice at least – according to a report in New Scientist. Elderly mice have had their faltering memories rejuvenated after a boost of an enzyme that switches genes on or off in the brain.

“We found they performed just like young animals,” says Hilmar Bading of the University of Heidelberg in Germany. He and his colleagues

injected a virus, which contains extra copies of a gene that makes an enzyme called DNA methyltransferase (Dnmt3a2), into the area of the brain responsible for memory. They then gave the mice a series of memory tasks to perform. It was found the elderly mice, in general, spent the same amount of time on each task as their young counterparts.

While, as yet, there is no drug to boost Dnmt3a2 levels in the human brain, Bading says more of it gets made naturally when the brain is active. So the advice for the moment is that as you age to keep your brains and bodies as active as possible.


Call anyone, anytıme

Internet relay calls are ideal if you are deaf or can’t hear well and have diffi culty using your voice.

To make a call, all you need is an internet connection – through a computer or mobile phone. You can even do it via instant messaging.

So now, you can easily communicate with anyone, 24 hours a day, even when you’re on the move.

To fi nd out how to make a call, go to www.relayservice.com.au

a phone solution for people who are deaf or have a hearing or speech impairment

Mobility Ad-2.indd 1 26/9/07 12:38:29 PM


Brisbane adventurer Ben Shuker, left, and his American friend, Brendan Kay, are doing a bike ride from Shanghai to Dublin to raise awareness and funds for haemochromatosis. The inherited iron overload disorder is the most common genetic disease in Australia and the US. Ben, 24, estimates it will take six

toDublinShanghai

link | fundraiser

months to complete their ride across two continents and 19 countries, including side trips. Brendan has an uncle who fell ill as a result of undiagnosed haemochromatosis.

The disorder, which can cause excess iron to be absorbed from food, affects about one in 200 people in Oz and the US. Though

often misdiagnosed, if can be treated by lowering the level of iron by periodically removing blood from the affected person. If diagnosed late, haemochromatosis can be fatal. Visit their blog, shanghai-dublin.tumblr.com. For more info on the inherited disorder, go to haemochromatosis.org.au.

Ben, left, and Brendan in China.

Call anyone, anytıme

Internet relay calls are ideal if you are deaf or can’t hear well and have diffi culty using your voice.

To make a call, all you need is an internet connection – through a computer or mobile phone. You can even do it via instant messaging.

So now, you can easily communicate with anyone, 24 hours a day, even when you’re on the move.

To fi nd out how to make a call, go to www.relayservice.com.au

a phone solution for people who are deaf or have a hearing or speech impairment

Mobility Ad-2.indd 1 26/9/07 12:38:29 PM


Tony Doyle, right, with musicians Chris Finnen and Angela Schiller, who also have vision impairment, at the Music Works event at the Governor Hindmarsh Hotel in Adelaide.

Maureen Montes

Ideal vision

cover story | ideal vision

Photos: James Elsby


The peopleMaureen Montes – the keen fundraiser

“I ran my own company for 25 years. I was an importer and wholesaler of silk fabrics for the fashion and bridal industry. I gave that away in 2006 when I was suddenly having diffi culty distinguishing between the colours – and colours was what my business was all about.

My vision deteriorated [due to Stargardt disease] so that I couldn’t manage anymore. I now have four per cent vision in one eye and six in the other. I’ve got good peripheral vision, but the central vision is where you identify shapes and colours. My job also involved a lot of travel.

Now, I volunteer with the Royal Society for the Blind. I visit an older lady at a nursing home about once a week. She herself is blind and 96. I also help out with the RSB’s main fundraising day, Charlie’s Day, every year in June.

‘Charlie’ is the signature name given to the guide puppies for the blind, which cost more than $25,000 each to train. Volunteers set up at various strategic places, like shopping centres, selling dog toys and key chains. Most people seem well-disposed to our fundraising efforts. We have a position with our signage and merchandise – and our tins, which we rattle!

Outside of the RSB, I also occasionally cook for Fred’s Van [a mobile food service program that

feeds the homeless].

For me, my [eye] condition is something I manage. Of course, you get frustrated not being able to pick-up a hem or sew a button, but I’ve led a very interesting life. I don’t think I would have been able to cope if I sat back and said, ‘Woe is me’. I think if you’ve always been encouraged from quite early on, there’s no such thing as ‘can’t’. You can do anything.”

Tony Doyle – the music man

“I’ve never had anything like normal sight, but I’ve previously had enough daytime vision to know what things look like and what colours are like. So even though I’ve been totally blind for about four years, I have the concept of what things look like. My condition is degenerative – a kind of variation on retinitis pigmentosa.

I didn’t take music up until I was 30. I was a bit of a latecomer. I don’t read music – I play by ear. I’m an improvising muso basically. I probably wouldn’t read music even if I had sight. I mainly play Celtic whistles these days. I guess in a world that has a lot of limitations for blind people, music is a sound-producing art and seems natural for blind people to explore.

I certainly do music for the love of it, but it’s also my income. I organise events, projects and festivals around the disability arena and have been able to do some fairly innovative work.

SoundWaves is primarily a musical project, which consists of two monthly workshops and a community event each month at the Prospect Town Hall. The sessions are all free and I get some funding from the SA Department for Communities and Social Inclusion. It’s more like a disability culture club atmosphere – it’s a chance for people to get up and have a go at performing in a non-threatening atmosphere.

I also do a monthly gig at The Gov called the Music Works. Mainly people with intellectual or learning disabilities or those with multiple disabilities, who need support workers, go as an audience. It’s pretty wild and the dance fl oor’s always packed!

With all of my work, I’m trying to open up a stepping-stone range of opportunities for people with disability, from amateur through to professional.”

Losing your sight can dramatically change your life. Link chats to people who have had it happen to them, as well as those who provide support within the vision impaired community. Carla Caruso reports.

Ideal vision


cover story | ideal vision

The service providers

Paul Boucher – the dedicated reader

“I’ve been a volunteer with the Royal Society for the Blind for about eight years and mostly I’ve been involved with its Print Alternative Service, helping provide a large range of “talking” books or magazines in audio format. Link Disability Magazine is one of various titles that we read.

I got into volunteering after I was made redundant. My wife had already been doing some volunteering with the Blind Welfare Association. When I talked to the RSB, they mentioned reading and recording books, which suited my skills. My skills are mostly in communication and I’ve done a bit of public speaking and acting. I had to go through an audition process to check how my voice sounded and, from then on, they started sending me stuff to read and I’d record it and send it back to them.

I’ve done everything from newsletters, which are one to two pages long, up to books that are about 270 pages. I recently did a book that went for 13 tapes, so I felt a bit sorry for the person who had to listen to my voice for that long [laughs]!

The clients obviously enjoy the service. Things like Link, other magazines and local newspapers often aren’t available in audio format, so that’s where RSB and its volunteers pick up the gaps.

I quite like reading anyway. I guess you wouldn’t do the job if you didn’t [laughs]! From the volunteer’s point of view, it’s a double bonus, because you’re helping people, but you also get to read some really interesting stuff.”


Rosemary Penn – the foodie radio host

“Radio station 5RPH 1197AM started as an access program of the university radio station. Early on, we did it from a little house in SA’s Mile End. We would phone up 5UV, they’d link us and we’d read The Advertiser newspaper for an hour a day.

Originally, I was on the steering committee and later took over as chair of the board. It stayed that way until recently when the station merged with Vision Australia. My husband, Malcolm, was totally blind, so I knew what the service was all about and I thought it was something from which vision impaired people could benefit.

The station is so much more comprehensive these days. It’s now 24 hours a day. We’ve got a variety of programmes and, all through the night, we get a feed from the BBC via satellite. 5RPH has always had the slant that it’s for people who, for one reason or another, can’t read the paper. They might be vision impaired, they might have learning difficulties, they might be in a wheelchair and can’t turn the pages – they’re the people we’re all about.

I now co-host The World of Cooking show, which airs every Sunday at 9.30am. Some while ago, the late Margaret Kirkwood [a food writer and Royal Adelaide Show judge] came to us and said a cooking program could be a good idea. We agreed! She knew about the radio service because her husband, David Crompton, was an ophthalmologist. So, for several years, Margaret used to come along to do the show and I’d look after the panel. When she wasn’t able to do it anymore, Lidia Moretti [pictured, left], who is a real foodie too, took her place and we’ve worked on it together ever since.

In essence, we read material on cooking, including the Taste section of The Advertiser, as well as often interviewing various people in the food industry. Just last week, we were talking to a representative from Beerenberg Farm in Hahndorf about their strawberry farm and jams. We get people phoning in wanting recipes and things too, which is nice.”


vision impairment | gaming

I walk into my local GameStop store determined to get the game I’ve been saving for. As soon as I enter the store, I can tell people are staring at me as I grab the new Max Payne title from the neatly stocked supplies. I know I’m not a normal customer. This is because of the long red-and-white cane I clutch along with my new Xbox 360 title.

As a blind person, I get asked a lot of questions, ranging from common sense to legitimate. It doesn’t bother me at all. And the one question I get asked all the time, especially on Xbox LIVE when I’m making my way onto the leaderboards after a heated fi ghting match, is: ‘How in the world do you play video games?’

The fi rst thing I want to clear up is that I’m not totally blind. I’m legally blind, but I’m often considered a total. To mimic my vision, the next time you play a game, try covering your right eye and making an ‘O’ around your left, leaving a pinhole to look through. That’s how I see all the time and even that smidgen is blurry.

I’ve been a video game enthusiast ever since I could walk. Even when I was little, I would hit the arcade with my grandmother so I could score 20 levels on Pac-Man or dive-bomb ships in a fl ight simulator. People stared at me with my white cane there as well, but when I heard the blip of the high score noise, I didn’t care, I was smiling.

That love for video games has never died and I still love a new adventure. I’ll anxiously await the next Xbox LIVE arcade title to come out, and, usually, out of my friends, I’d be the fi rst to ‘beat’ it. So how’s a blind person able to play Grand Theft Auto IV (GTA), Halo, Batman or even Star Wars? Well, there are a number of different adaptations for different scenarios.

GTA has audible GPS in all of its cars, and with my surround-sound headset, different events happen in my left and right ears. Traffi c noises swoosh off in my right ear, so I know I have to turn my car to the right. My GPS tells me also to turn right, but how do I know if I’m even on the road? A simple fl ip of the vibration option fi xes that problem. If I have to get out, I make sure the sound-effects volume is at its max, and I use what remaining vision I have to detect if there’s some sort of object near me as I am walking. The targeting feature is a little harder to deal with, but I never give up. An action game such as GTA needs deeper concentration and I die more often than anyone else, but there’s one thing I will do, even if I’m sitting trying the same mission for an hour: I will get past the mission.

There are some games that I don’t even have to use my blurry eyesight to play. The card game, UNO, is a prime example. The controller

vibrates whenever it’s my turn, and the cards each make a sound when played or drawn. When I have to pick a colour, the colour selection pleases me with a wonderful song from my childhood – the musical notes of the game, Simon Says. Red is the lowest tone, and blue is the highest tone. Green and yellow have different pitches.

With all these games I do play, there are a lot of games I simply can’t play with my blindness, as well as my secondary disability of cerebral palsy, such as the Call of Duty series. That game isn’t as sound-oriented as some of the other games I play and my vision won’t help. A lot of levels are outside in the snow with no clear map I can blow up along with no detectible crosshair to tell me where I am aiming at. Video games that are hard on my cerebral palsy are ones where I have to tap the buttons really fast to do certain combos. I haven’t really come across a video game where this is a huge issue yet, but I’m sure there are some really inaccessible games out there just as there are wonderfully designed video games.

The Kinect games, however, I can’t play at all. I have to sit at a distance from the TV and most of the games are so visually-oriented that I don’t know where or even how to move. I try all games, however. I have every

Robert Kingett is an American college student who is passionate about gaming – and also has cerebral palsy and is blind.

Bring your

game face


“I only write because it’s cheaper than therapy.

”

“[It is] an art form that relies on the ears, not the eyes.

”demo downloaded on my console you can think of. I’ve bought more than 20 games and I’ve beaten many more. I may be at a disadvantage since I can’t use the radar in Halo or can’t ever win a racing game, but that doesn’t mean I’m not a formidable opponent. I’m a true gamer!

I once told a fellow gamer I was an Xbox gamer. When he snorted and told me I wasn’t because of my blindness, I tossed him a controller and said: ‘Try me’. I proved him wrong.

Just because I play a bit differently than any sighted, able-bodied gamer doesn’t mean I’m not one as well. I love all types of games, and I hope to play many more against other amazing people, with my surround-sound headset locked in place, my game face on and maybe a new guide dog by my side. One bark for left, two for right!

“ I die more often than anyone else.”

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link | accessible travel

Tell us about having multiple sclerosis and how you got into wheelchair travel. Before I was diagnosed with MS in 2000, my husband and I were keen travellers. In fact, we had organised our life so that we could work as technical writers for six months of the year and then travel for the remaining six months!

The first time we managed to put this into practice was backpacking around the UK and, unfortunately, I was diagnosed the following year. Travel took a backseat while we adjusted to the diagnosis and also to becoming parents in 2002 when our son, Kai, was born. As my disability progressed, we slowly started travelling again, but with the addition of “Little Red”, my trusty mobility scooter. I now use a motorised wheelchair at all times in my home, but can still transfer to the scooter for travel and outings.

The more we travelled, the more I noticed that there was a huge disconnect between the providers of accessible accommodation and “wheelies” like me. I couldn’t get the information I needed to make informed decisions about my travel choices and, on the flipside, many of the providers just didn’t know what they should be providing for their wheelie clientele. And so, I came up with the idea for Wheelie Planet: a website that provides travel and product reviews specifically for wheelchair travellers. I also try to provide feedback to the travel industry about where it can make improvements.

Fave place you have travelled? Since becoming disabled, I have a new appreciation of cities and concrete paths! Favourites are usually places that are easy for me get around independently. The two places I have really enjoyed are Sydney and Surfers Paradise.

Least accessible place you have travelled? We went on a cruise with stops in New Caledonia and Vanuatu. I didn’t even attempt to get out at any of the beaches, but I did venture into the cities of Vila and Noumea, which

Globe-trotting on

“The more we travelled, the more I noticed that there was a huge disconnect… [for] ‘wheelies’ like me.”

After being diagnosed with MS, Vanessa Waller found a new passion – as a “wheelie” travel writer.

wheels


were very inaccessible to me on the scooter. Footpaths were patchy at best and often they would simply end without even a lip to get down onto the street, leaving me stranded and with no choice but to turn around and scoot back the way I came! Thinking back to my travels before the wheelchair, I suspect Venice would have to rate fairly high on the list of inaccessible places – mobility scooters and sea water simply don’t mix!

Any pickles you have got yourself into while travelling? I usually have my husband and 10-year-old son with me, so they manage to avert disasters and fi nd workarounds for most issues. My scooter did attract a lot of attention on the cruise ship as it had to be parked out of the way in the dining room. My husband would help me transfer to a seat in the restaurant and then the waiters would fi ght over which one of them would get to be the scooter valet for the night!

Biggest gripes about travel offerings as a wheelchair user? I get a bit annoyed at the lack of choice for wheelchair travellers. By the time you have eliminated all the accommodation that claims to be accessible but really isn’t, the choice often becomes very narrow indeed.

I am also frustrated by providers who haven’t given much thought at all to what it means to be “wheelchair friendly”. For example, they might think that putting a ramp into a room makes it accessible, forgetting that their breakfast room can only be reached by a fl ight of stairs. I say to these providers that if they can’t afford an architect to design and make changes, hire a wheelchair for an hour and wheel around the property. They will very quickly discover where the biggest problems are.

Finally, I do get pretty peeved when providers assume that people in wheelchairs don’t want a nice view. Accessible rooms are often afterthoughts with cobbled-together bathroom modifi cations in the least desirable parts of the property and I am yet to fi nd one with a really good view.

Where can Link readers see your work? I write travel reviews and a blog for Australian Traveller Magazine’s online newsletter, AT Wire, where I am known as “The Wheelie Traveller” (australiantraveller.com).

I write another blog about my life with MS, among other things, over at Wheelie Planet and welcome wheelie travellers everywhere to submit their own travel and product reviews to share the good, the bad and the ugly of travelling with a wheelchair or other mobility device.

Vanessa Waller at the 2012 Access Worlds sailing championships in April. Photo: Kellie Leczinska.


While many hotels offer mobility accessible rooms for guests with disability, the Mercure Hobart hotel has gone further with the modifi cation of eight accommodation rooms to specifi cally cater for visitors with a hearing or vision impairment.

Mercure Hobart has worked in partnership with Hearing Link Tasmania, the Tasmanian Deaf Society and Royal Guide Dogs Tasmania on the project. Rooms have been updated with a range of features for the Deaf and hard of hearing including tactile technology such as an alarm clock with a strobe light and under-pillow vibrating pad, responsive to the hotel’s fi re alarm, room doorbell and phone unit. Large dial button and display screen telephones, touch reactive alarm clocks, increased room lighting, audio versions of the room compendium, room service

menus and emergency and evacuation information have also been introduced for the vision impaired. In-room stationary and door signage have been produced in Braille, as well. General manager Adrian Sampson added: “Of course, we welcome guide dogs and hearing assistance dogs.”

The Mercure’s public areas and front desk services have also added specifi c disability features for guests such as Hearing Loop, tactile fl ooring and Braille touch surfaces. The Embers restaurant, bar and lounge menus are also available in Braille or audio formats. All hotel staff have been trained in disability awareness and assistance, basic sign and how to use new reception services including the telephone Relay Service and Hearing Loop. accorhotels.com

Oz’s fi rst custom-made hotel rooms for those with vision and hearing impairment

I hope that Wheelie Planet will eventually become TripAdvisor for wheelies! (wheelieplanet.com).

I was recently interviewed on 702 ABC Sydney by Linda Mottram who has asked me to call her whenever I am travelling, so you will be able to hear me on the radio when I am out

and about. Listen for an update in the fi rst week of December when I will be competing in Sail Melbourne.

Private passions outside of work? I am a relatively new but keen sailor. I live very near my local Sailability Club and was fortunate enough

to represent the club in the 2012 Access Worlds at Middle Harbour Yacht Club earlier this year. My other great passion is writing. I am currently working on a book about living with MS and also a novel set in Sydney in 1947.


link | food

Cacciatore sausage, eggplant and tomato penne

Serves four

2 large eggplantsOlive oil3 fresh cacciatore pork sausages2 tbspns olive oil1 brown onion, peeled and finely diced1 tbspn garlic, crushed3 fresh bay leaves6 Roma tomatoes, remove seeds, cut into dice1 tspn chopped chilli (add additional if like it hot)1 x 410g tin crushed tomatoesSalt and pepper1 pkt San Remo penne½ cup grated parmesanFresh basil leaves

Take the eggplants and place on an oven tray, lined with baking paper. Rub a little olive oil over them. Place in a moderate oven (180c) and bake for 10 to 15 minutes until cooked.

Remove and set aside, allowing to cool. When cool, peel skin off and dice eggplant roughly. Take sausages and split down the middle. Remove the skin and place the meat into a bowl.

In a large pan heat olive oil on a low heat, add onion, garlic and bay leaves. Gently fry for 3–4 minutes, making sure not to colour the onions and garlic. Then add sausage meat, stirring continually breaking up the meat, cook until sausage meat is lightly browned.

Add diced Roma tomatoes, eggplant and chilli, stir through and cook for 2 to 3 minutes. Add the crushed tomatoes into pan and bring to the boil, reduce heat and simmer for a further 15–20 minutes or till sauce thickens, season with salt and pepper according to taste.

Cook pasta as per packet directions. Once pasta is cooked, drain and add immediately to pan and toss through the sauce, sprinkle with the parmesan and mix through pasta. Tear chunks of basil leaves and stir through pasta and serve immediately.

Courtesy of San Remo, sanremo.com.au

Spring flavours bloom

Tea Blossoms is a new Australian company, which has created a range of “blooming” teas to combine the best of two worlds: Oriental and Western. The tea is like a mini floral bouquet that blooms in front of you in your glass or teapot – and it’s perfect for the health-conscious with its combo of the healing powers of green tea with the floral benefits entwined within.

High quality tea is not only good for relaxing the body, but also brings numerous health benefits such as decreased risk of diabetes, heart attack and stroke. As well, it protects bones and boosts immunity function and is a fab supplement to weight loss programs as it speeds up the metabolism and contains no kilojoules. Flavours include Japanese cherry and jasmine chocolate black. teablossoms.com.au


food | bruce mumford

Why would you go out to dine when you’re in a wheelchair? Things are hard enough already without the added difficulties of preparing equipment, getting dressed, organising transport, checking the restaurant arrangements and making bookings etcetera, etcetera.

Well, for a start, it’s good for anyone to do something a bit different, meet new people, take on a challenge and, for us, just to get out. And who knows, you might even enjoy yourself!

Over the years, I’ve had many experiences dining out in various states of disability in a great range of places. The restaurants in Belgium, for instance, which only have non-smoking areas on the first floor, or the one in Germany with a lift, which was so small I had to send my wheelchair up separately first, or the motel’s café in New Zealand which was “furly eggsessebl”, but was actually up two flights of stairs.

So I haven’t been able to avoid picking up a few tips, which I will try to pass on.

• The first thing you must do is ring ahead to check on the accessibility of the restaurant. It’s also great to drive by and visually inspect the venue, but this is not always possible, especially if travelling. If the person answering is not sure about accessibility,

or thinks there’s probably an entrance for you around the back or at the side, it’s probably best to try somewhere else. We once had a very exhausting experience trying to get into a local restaurant, where they had assured us there was an easy path from the staff car park. It turned out to be a muddy track down a hillside set with occasional flagstones, which made it near impossible for my wife to navigate my chair through the pitch dark.

• It’s often wise to ring back later and confirm your booking as well as your requirements.

I used to forget the importance of letting people know I would be coming in a wheelchair. But if you’d like the arrangements to be suitable for you – such as furniture moved, cooking instructions, a slightly higher table – then you must let the restaurant know in advance. It is also a good idea to let of the restaurant know discreetly of the trouble you have gone through to get yourself there, perhaps with an enquiry about the best place to park the

wheelchair, transporting bus you had to hire, and so on.

I recently took the easy option and booked at the nearby Pizzas in the Mist in Robertson, NSW, pictured, where I am friendly with the owners and they knew my limitations. Even with that advantage, I didn’t account properly for height of the single step, which made the small ramp I had brought with me completely useless.

• So it’s a good idea if there are steps or slopes, to find out their dimensions as exactly as you can.

• Once at the restaurant itself, try to be careful of other diners as their friendliness may be tested if you push their face into the soup. We had a lovely table arranged for us and the staff were most attentive.

• Don’t be afraid to ask the staff for smaller portions or arrangements for your food to make it easier to handle (e.g. a bowl is often easier than a plate). I had ordered a Peking duck pizza (!) so could eat with my fingers, but as restaurants can’t be expected to keep them, it’s often best to bring your own specialised utensils. I like to use a splade (a great Australian invention), which looks “normal” but allows me to use one hand for cutting, spooning

A wheelie useful guide to dining out

“Other diners’ friendliness may be

tested if you push their face into the soup”


and forking. If you like to look particularly elegant, perhaps you could bring your utensil in a special case.

Not only did I get out and meet people on my dining adventure, but I actually had a table next to one of our great theatrical icons (think fi shnet stockings and high heels, ‘just a step to the right...’), so you never know just what experiences you will have.

Below is a list for restaurant managers from my friend near Hobart, Sally Wise, who helped me with accessible travel when I was in Tasmania, as well as subsequently fi lling up my shelves with her marvellous cookbooks!

P.S. And there’s another thing; Belinda the restaurateur tells me her father will soon be building a ramp into the restaurant, so our visits out can actually help reinforce the need for accessibility.

Tips for restaurant managers from Sally Wise

• Think ability, not disability. Think in terms of what a person can do, rather than what they can’t do or enjoy.

Photos: Louise Mumford

• Don’t make assumptions – every person is an individual.

• Treat adults as adults, regardless of their disability.

• Offer to help, but discreetly e.g. a generic question as would be asked of any restaurant patron: “Is there anything we can do to make your time with us more enjoyable?”

• Don’t be patronising – use a normal tone of voice and speech.

• Always present a warm and welcoming manner.

• Acknowledge the person with a disability (i.e. don’t just speak with the support person). They

A wheelie useful guide to dining out

“If there are steps or slopes, fi nd out their

dimensions.”


are your customer and should be treated as such.

• Don’t touch a communication device or wheelchair unless asked to do so by the person with a disability

• Avoid placing people with a disability in heavily-traffi cked areas of the restaurant. However, also avoid sectioning the person off in an area that is too isolated.

• Allow a little extra time. if needed.

• Make sure there is space for walking frames or wheelchairs to pass through.

• Make sure that accessible toilets really are such i.e. not used as a store room, fi lled with boxes etc.

• If someone needs to communicate through sign language, make sure table decorations are not as large as to impede this. Don’t shout at a person who is deaf or hearing impaired – it won’t help.

• If a person is vision impaired or legally blind, keep in mind that it is legal for a guide dog to enter a restaurant. Don’t touch or feed the dog.

• Again, for vision impairment, give clear, concise directions and offer to lead the way. Allow the person to hold onto your arm if they need to. Alternatively, they might like you just to walk a little ahead of them so they can follow closely behind.

• Patrons with vision impairment may like you to read out the menu specials board or menu – include prices.

• Also for the vision impaired, large-print menus are handy. Make sure there is a good contrast, too e.g. large black print on white paper.

• If a person is slow of speech, which could be due to cerebral palsy or an acquired brain injury, allow the person time to communicate. Listen carefully and patiently – it will make all the difference to the person’s enjoyment of their dining experience with you.

• Speak naturally but not too fast. Don’t offer too many choices at once – this is confusing even for an able-bodied person.

food | bruce mumford

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opinion | kelly vincent

In August of this year, I undertook my first overseas study tour as an MP. To further my parliamentary work in this area, I went to investigate disability services, policies and organisations in the UK and also in three Scandinavian countries – Denmark, Norway and Sweden.

I also had meetings on other issues, such as chronic pain treatments and management and sex worker law reform. So much was learnt on this trip, it’s hard to know where to begin to explain it to you all! I could easily fill all the pages of this magazine with the ideas and inspiration my travels in Europe have brought me, but I’d best stick to my word limit and start with just one issue for this edition of Link.

Being a wheelchair user embarking on overseas travel is always fraught with anxieties. Will my wheelchair make it into the cargo-hold after I’ve abandoned it at the aeroplane entrance? Will baggage handlers attempt to take the wheelchair apart and destroy it in the process? Will heavy objects rest on the chair and render it useless at the other end? I know that many of you as readers with disabilities, or as a family member or carer of someone with a disability, you would have experienced this when you travel. Will there be accessible toilet facilities? Will all of our specialist equipment arrive? Will the flights run on time and allow for the behavioural challenges of a travel companion that has an intellectual disability? It’s not just about being a wheelchair user – people with specific personal needs and a variety of disabilities face these challenges when planning both work or leisure trips.

Anyway, eight international flights later, I’m pleased to report I still have Charlie, my wheelchair, and it arrived at each location without drama. The rims aren’t exactly ‘true’ anymore, but it’s hard to know whether all the cobblestones in Europe caused this, or some traumatic times in the cargo hold of a plane caused this. Given the recent traumas experienced by disability advocate David Holst when taking his daughter on an overseas

Pull-quote: “Embarking on overseas travel is always fraught with anxieties.”

family holiday with delayed flights and little respect shown by the airline, I was pleased to note that the two prominent international carriers I travelled with seemed to show significantly more respect and a good deal more assistance than Australia’s national airline carriers.

In each European airport I visited there were trained special assistance teams that met me at the gate on boarding, and then came onto the plane for disembarking at the other end. They were trained in manual handling and showed significant skills in their work and respect for the people they were assisting. The airline stewards were generally positive and helpful in my interaction with them. At some airports there were specific ‘special assistance’ points where you could buzz for extra help. Overall, my experience was in stark contrast to some of the attitudes I, and many other travellers with disabilities, have encountered in Australia. It was refreshing, and certainly something I believe that airlines, airports and their staff could develop back here at home. The trials many people with disabilities and their families face in undertaking travel is certainly an area my office hears about regularly from the community. It’s one of the issues I look forward to tackling in the coming years as we strive for a world where everyone can access travel opportunities.

Travelling overseas as a wheelchair userDignity for Disability MLC Kelly Vincent is back from her first international study tour.


Safeguard your iPad – and WIN one of fi ve!

The Koosh durable iPad frame and stand, distributed by iWorld, is designed specifi cally with people with disability and children in mind. The dense foam case provides plenty of cushion and the germ and stain-resistant case makes cleaning effortless. It is also lightweight and comes in blue, green, red, black and orange. Made from non-toxic EVA foam, it doesn’t contain any lead, phthalate, latex or PVC, and is compatible with second and third generation iPads. iworldaustralia.com.au

Want to win one? We have FIVE to give away! Email [email protected] with ‘Win Koosh iPad case’ in the subject line by October 31, 2012.

link | new products

Off the shelfSpeak up

Dragon NaturallySpeaking 12 is the fastest, most accurate and easy-to-use version of Dragon yet with more than 100 new features and enhancements that will let you stop typing and start talking and get more done in less time than ever before. Dragon’s powerful voice recognition software enables you to interact with and command your PC, cruise your email, update Facebook in seconds, surf the web and create reports – just by speaking. australia.nuance.com/dragon

in the subject line by October 31, 2012.

We have a simple philosophy at Orana… We have a simple philosophy at Orana…

We exist to provide support for people living with a disability.We exist to provide support for people living with a disability.

We encourage, we train and most importantly we provide real life choices.

With services in metropolitan and regional South Australia, we ensure support is tailored towards personalised service.

With a diverse range of employment and accommodation options, Orana is committed to excellence through creating independence for people living with a disability.

To fi nd out more about Orana and how we support South Australian’s with a disability, visit our website www.oranaonline.com.au or phone us on (08) 8375 2000


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Comfort can be cool too

Just Bee’s range of colourful walking shoes is designed specifically for women who prioritise comfort. Crafted using some of the softest leather uppers, linings and socks, placed upon a super flexible, ergonomically sound outsole, they’re designed to match the natural feeling of your foot. Ph: 1300 785 300.

New ultra lightweight, stylish exerciser

Phillip Thorn was left deaf, blind and paralysed from the waist down after contracting meningitis. Brother Clem looked at equipment to help his rehab, but nothing ticked all the boxes. YouBike was, hence, designed to answer the problem for bed-bound patients who need access to exercise equipment for the upper and lower body. youbike.co.nz

Talking keyboard

An affordable line of “talking keyboards” has been launched: the TextSpeak TS series Alternative Augmentative Communication (AAC) speech-generating keyboards. The wireless keyboard and speaker work in tandem, with typed text transmitted and spoken directly from the speaker. The keyboard can help trauma and postoperative patients or anyone who needs a permanent solution in synthesised speech. textspeak.com


How does an artist with complex needs forge a career in the competitive arts industry? Supported studios exist precisely for this purpose. A supported studio is defined by Accessible Arts as a sustained creative environment that fosters and supports the individual practice of artists with disability. Facilitated by practicing artists, what is crucial to such studios are the opportunities they offer artists to be involved in wider artistic networks and develop a professional career.

Supported studios have emerged gradually throughout Australia over the past 30 years and it is estimated there are about 20 studios across the country. While supported studios share many commonalities, they generally exist independently from one another and operate according to their own structure and priorities.

These studios generally emerge out of an identified response to the needs of artists and an absolute reliance on the passion, dedication and skill of staff and volunteers. The Studio ARTISTS program, an initiative of Studio ARTES, is a good example of this. Located in Hornsby, NSW, Studio ARTES is an independent, not-for-profit organisation, offering creative programs to adults with disabilities. The Studio ARTISTS program was initiated in 2010 in direct

response to the needs of particular individuals working within the more recreationally-focused core art program. Studio ARTISTS caters specifically to adults with disabilities who have a vocational interest in the arts. That is, people with an established arts practice and a developed portfolio of work, who possess the drive and passion to pursue art professionally.

Artist Daniel Kim is a founding member and was a key inspiration for the launch of the Studio ARTISTS program. Primarily a painter, Daniel has attended Studio ARTES for almost a decade. After selecting his subject matter, Daniel works with a meditative focus. Barely breaking for lunch, Daniel generally completes a painting in under one day. Attending the art program weekly, Daniel’s skill has progressively developed, as has his reputation as an artist. In 2010, he was selected as a finalist in the youth portrait prize at the

National Portrait Gallery in Canberra. In the same year, Daniel completed a portrait of NSW Governor Marie Bashir. In early 2012, with the support of a one-off funding grant from Arts NSW, Daniel’s artistic talent was further recognised when he was awarded a 10-day mentorship with esteemed artist Greg Warburton, a multiple Archibald and Blake prize finalist.

As a young man with autism, Daniel has a preference for familiarity and routine. In the Studio ARTISTS program, he is regularly invited to undertake artist residencies in a variety of galleries and sites. Such occasions require Daniel to dramatically alter his habitual routines. Inspired by his passion for painting, Daniel achieves highly and benefits greatly from these opportunities. His autism makes many forms of communication difficult, including speech. However, in paint, Daniel is fluent. His mother, Joy, explains: “Daniel is happy when he paints because he can speak through painting.”

Daniel Kim fits the career profile of an artist, and with further support and art training, it seems inevitable that he will only further his employment as a professional artist.

“Daniel is happy when he paints because he can speak through painting.”

Accessible Arts has developed a network so that visual art studios, supporting the professional development of artists with disability, can connect up. Gabrielle Mordy, an artist, writer and artistic director of Studio ARTES Northside Inc, reports.

Creativity supported

link | accessible arts


Yet, according to the current NSW paradigm of funding and employment for adults with disabilities, Daniel Kim is already meaningfully employed. Daniel works four hours per week in a disability enterprise doing assembly work. Following strict instructions, Daniel positions components of machinery into boxes. According to his mother, the role doesn’t offer Daniel stimulation or any prospect for social connection. In this “paid” position, Daniel fits into the statistics as a successful graduate of current disability employment policy. After several years’ experience in the role, he now earns close to four dollars per hour. Daniel seems much more likely to establish social connections in an environment where he shares something in common with those he works with i.e. an interest in art.

With support, Daniel shows serious potential to practice and be

employed as a professional artist. This potential could be much more easily realised if current disability employment structures assisted artists with complex needs to work as artists – and for supported studios like Studio ARTISTS to be considered disability enterprise. Currently, without the support and advocacy of Studio ARTES, there seems to be few opportunities for Daniel to pursue his passion, talent and career as a professional artist.

In light of the artistic value and needs of such studios, Accessible Arts, the NSW peak body for arts and disability, has initiated the Supported Studio Network (SSN). A key objective of the SSN is to promote the artistic contribution of supported studios and their artists as fundamental to contemporary art culture and advocate for access to independent professional

development pathways for artists with disability.

The SSN network, launching this month, brings a welcome level of professionalism and offers an essential conduit for communication in the industry, and importantly, to a community of artists, who are contributing to the richness and diversity of Australian cultural life.

For more information, visit studioartes.com.au or aarts.net.au. The Supported Studio initiative has been made possible with support from the Vincent Fairfax Family Foundation.

Photos clockwise from top left: Daniel paints the harbour at Government House in Sydney. Daniel Kim works with esteemed artist Greg Warburton. Artist Daniel Kim painting in Greg Warburton’s studio. Photos: Studio Artes.


books | karen tyrrell

Method in the

In time for Mental Health Week, from October 7-13, Brisbane teacher and author Karen Tyrrell reveals how nightmare parents at the school she worked at harassed her to breaking point in her gutsy memoir, ME & HER: a Memoir of Madness. In it, she shares her struggle with bipolar disorder and her journey to recovery.

In May 2005, my mad half, “Her”, was born...

Hot water flowed over me, soothing my skin, washing my anguish and tears down the drain. After a week tucked up at the motel, should I return home to Steve and the kids? To teaching? I quivered. No, I can never return to that horrid school. Never. I heaved a loud sigh.

Without warning, the shower screen shook, reverberating from thuds against the bathroom window. The soap dropped, bumping the tap. The stream became icy as I stood there, shivering. I spun the handle around and turned off the water. Muffled shouts came from outside. Then someone pummelled hard on the front door of my motel room.

“Samantha, you all right?”

Samantha? That’s not my name!

My hands shook, beads of sweat forming on my forehead. “I’m naked. I’m getting out of the shower. Wait. Wait till I’m dressed!”

I grabbed a towel, drying my body as fast as I could. The chipped, steamed-up mirror reflected a glimpse of me: hair dripping over my face – skin the colour of milk.

Why is someone banging on my door? I didn’t do anything.

“Open the door now! Samantha Howard, you’ve got three minutes to let us in!”

I gulped. But that’s my fake name. The name I registered at the reception counter.

My heart hammered fast, the surging adrenaline pumping through my veins.

What will I do now?

“Open up!” demanded a deep voice. Two noses pressed against the fogged-up bathroom window.

“I can’t. Not till I’m decent.” I crept into the main room, past my half-packed suitcase, the towel wrapped taut around me. They might grab me and take me away. Then I’ll never go home. I must stop them from coming in.

My mind raced with desperate plans. I rushed past the perfectly made bed and flung open the wardrobe, my fingers rifling through clothes sorted into sections with matching shoes underneath. Past purple, the colour of insight and imagination, and jade green, the colour of harmony and self-healing.

Today I crave something stronger. Red – the colour of power and confidence.

I tugged on my cherry wool knit, black trousers with red pin-stripes. Colour means everything; it can transform my day!

My body froze behind the door, straining to listen, but too petrified to gaze through the peephole. My hand trembled as I unbolted the door. Slowly, I turned the handle.

Oh no! Why the hell are they here?

Their uniforms, badges and guns – symbols of their power – screamed out at me. But I couldn’t fathom their names or their damn questions. Someone brushed past. He yanked open the heavy curtains and the sliding door leading to the balcony. Glaring streams of light blinded me. The roar from the freeway rushed in, blaming me for terrible things.

Will they ever forgive me?

I turned back to the lynch mob, confused. Two cops and another two in plain clothes stared back at me. Two ambos wore surgeon’s rubber gloves, held high as if to operate.

A middle-aged woman stepped forward. “I’m Nancy. A nurse from

madness


the hospital. And this is Doctor Lau.” All six of them entered the room, but the police and paramedics remained back, guarding the door like sentinels.

The nurse and the doctor huddled around a laminate table in the kitchenette, insisting I join them. I remained steadfast, halfway between the two groups. My eyes flickered back and forth.

“Wh–what do you want?” I was trying to bluff them.

“Someone is concerned about you. We’re taking you to hospital for psychiatric assessment,” Nancy said.

“Who’s concerned? I–I’ve done nothing wrong!” But the voice shrieked too high and too shaky to be mine.

“The motel manager is concerned... Samantha, where do you live?”

The doctor cast sideways glances as she continued to interrogate me. He looked as if he’d wanted to be somewhere else. I knew exactly how he felt. Then the royal blue carpet speckled with luminous colour grabbed all my attention.

She started up again. “How did you get here? Why are you here?”

I provided no answers. A portable TV, hoisted high on a bracket, flicked on. Scenes played out in brilliant colours, mesmerising me. I shifted the volume to zero – the only way I view TV is in silence. There’s enough racket droning inside my head.

What the hell are these people asking me now?

I gazed over to them, my heart beating fast, my pulse throbbing in my ears. Their words revolved in my head, rewinding and replaying.

Someone said, “I’m terrified... Could you please smile?” That shaky voice is mine.

Out of the corner of my eye, the bald police officer smirked. Two corners of my mouth lifted, in response. Pleading for smiles became my new coping mechanism, part of a game I invented. I was the captured emissary on the TV show Alias, who had trespassed on foreign turf. I was actor Jennifer Garner and these were my interrogators.

The doctor studied me. “Why are you here at this motel? How do you spend your time?” He scrawled down something.

Karen Tyrrell

Instead of replying, I stared blankly at them, answering their interrogation in my mind. But I had responded to ten questions ahead of them.

How did these people know where to find me? Who told them and why? Only the motel manager and four girlfriends knew where I was. They would never betray me. Steve and the kids didn’t have a clue.

Six interrogators. Six against one. I didn’t have a chance. They would be escorting me to the psych ward. I couldn’t escape it, only delay it.

For the last seven days, the motel had become my sanctuary from the outside world; a place where I could write undisturbed, testing out my theories on natural health without prescription drugs.

I deferred my departure, boosting my self-confidence. “I’m not going with you until I have done my hair and lipstick.”

Now I’m in control.

They relented. Before leaving, I brushed my teeth, smoothed down my hair and clothes, checking myself in the mirror. I looked clean and sane.

I grabbed my handbag on the way out. My guards guided me along the corridor, down the concrete internal steps. They led me through the undercover car park, outside to the sharp Queensland glare. I shuddered at the awaiting ambulance and the parked police car, like silent beasts waiting to pounce. I was that crazy girl being hauled away by the cops to the nut house. Worse than any news bulletin. Worse than any report I had read in the papers. My God!

For more information, check out karentyrrell.com.


Purple Orange

Artist Dana Nance (left) showcased her painting, Dana’s Story, at the Julia Farr Association – Purple Orange Perspective Art Exhibition. Born in Romania, Dana spent the fi rst seven years of her life in an institution before being adopted by an Australian couple, as refl ected in her artwork.

art | adelaide

Adelaide was awash with art from the disability community in August, as part of the South Australian Living Artists Festival.

Life infull colour


Dizzy

Community Bridging Services (CBS) presented its fourth SALA exhibition, Dizzy, featuring exciting, diverse new artworks by 19 artists with disability. All artists attend CBS art programs at Eastwood Community Centre, Broughton Art Society and Salisbury Neighbourhood House, facilitated by Hans Kreiner and Tim Lackmann.

Rarely Seen

The Disability and Arts Transition Team and the State Library of South Australia launched Shots in the Dark: Rarely Seen, an exhibition of work by photographers who are blind or vision impaired.


books | bill moss

The title of Bill Moss’s memoir, Still Walking, refers to the fact he has a form of muscular dystrophy called FSHD, and was told by doctors when he was in his twenties that he’d be in a wheelchair by age 50.

While steadily climbing the corporate ladder to become one of Australia’s highest paid and most successful entrepreneurs, Bill’s memoirs tell the story of how he tried to hide his increasing physical problems from his work colleagues, associates, friends and even family for many years – but, most of all, from himself.

Gradually, however, he came to face up to the fact that he had FSHD – and in so doing, became increasingly determined to fight for a better deal for all Australians with disabilities.

While at Macquarie, he established the wheelchair-accessible Lime Taxis fleet, and after retiring from Macquarie at the height of his success in 2007, went on to establish a global research foundation, searching for the causes of, and cure for, the many forms of muscular dystrophy.

All profits from the sale of Still Walking go to the FSHD Global Research Foundation and disability services provider Fighting Chance Australia. This is an excerpt from Bill’s book in his own words…

In a lifetime, there are many people you meet—some who impress, some who disappoint. There are usually very few who shape your life and leave a lasting impression. But I am fortunate to have met many great people from around the world who have shaped my life.

One such person is Macquarie Bank’s former CEO, Allan Moss, who once said to me: “Everything is on the record”. This simple but powerful phrase has always inspired me to just tell it the way it is, so here goes.

Many years ago, I met a remarkable young man who made a major impression on my life. Matt Laffan was in a wheelchair and suffered from an incurable disease that would take his life at an early age. Matt was also a successful Sydney barrister and a passionate advocate for the rights of all people with disabilities. It was Matt who made me face up to the fact, honestly and frankly, that I too had a disability. He said to me: “You have a disability and you won’t admit it. You should tell your story. You don’t realise what an inspiration you are to people that carry a disability. It’s a story that must be told.” So, in memory of my dear friend, Matt Laffan, I will tell my story.

Australia’s world champion golfer Greg Norman also inspired me in

a way he never understood. His mottos, “attack life” and “tough as nails”, were phrases I could relate to because when I met Greg I was living these phrases.

To survive and succeed with a disability, you need both to attack life and be as tough as nails. In the relentlessly demanding world of international business, no one gives you an easy ride, not even your friends and partners.

For the vast majority of people, to be born with or acquire a disability at an early age is to be sentenced to a life of poverty, low socio-economic status and lack of career opportunity, particularly when you grow up in a fibro house in an economically disadvantaged area as I did.

If you are lucky enough to get a job, then you have to be lucky enough to be able to get to work and then be lucky enough to be able to get into the building if you use a wheelchair. You have to deal with disability-unfriendly furniture, toilets and travel. Your chance of succeeding is like winning at poker with three cards. But it can be done, as my story demonstrates. It’s all about gathering as many chips in life as you can before someone tries to take them away.

There is no special assistance for people with disabilities to play this game; in fact, if you have a disability, you are fair game.

So what do you do about having a disability? You do your research,

Walking tall

“You need both to attack life and be

as touch as nails.”

work out what the solutions are and then start to educate those around you. You stand up and fi ght for what is right and just, you speak out and challenge the paradigms within which we live. You challenge politicians, journalists, bureaucrats, friends and colleagues. If you are living with a disability, you can challenge the status quo, you can change the system; it is simply about having a go and educating those around us, never giving up and just telling it as it is.

Former Australian Prime Minister Paul Keating once said to me: “You are a marvel. I can’t believe how you just keep doing what you do. Watching you makes me feel tired.”

This is not just a story about the millionaire factory, as Macquarie Bank is famously known, it’s a story about succeeding, about changing the world for the better and putting back into the world some of what you have harvested. Above all, however, it is about disability.

Paperback 150 x 230 x 18.5 mm

STILL WALKINGbill moss

STILL

WA

LKIN

G

bill m

oss

When Bill Moss decided in 1984 to leave a prestigious job and take a salary cut to join the boutique investment firm that later became Macquarie Bank, he faced the challenge of starting a real estate investment business from a small desk in an open-plan office, with just one fulltime employee working for him. In its first year of

operations, the business Moss had seemingly crazily agreed to take on made a profit

of just $40,000.Twenty-two years later, when he retired as the legendary head of Macquarie

Bank’s real estate and banking division and one of Australia’s highest paid executives,

Bill Moss AM had built a global business in real estate finance, development and funds management that stretched across five continents from Africa to Asia, Europe,

Australia and North America, and created thousands of jobs.Yet up until a few years before deciding to retire from the ‘Millionaire Factory’,

Moss fought every step of the way to conceal a grim personal secret from work colleagues, business associates and friends—and most of all from himself. When he was 27, Moss was told by doctors he had a degenerative and incurable muscle-wasting disease, a form of muscular dystrophy called FSHD, which the ambitious,

driven young businessman was assured would leave him crippled and in a wheelchair

by the age of 50.These memoirs are the inspirational, moving, blunt and at times very funny

account of how a senior and seemingly all-powerful Macquarie banker struggled for

years through physical discomfort, pain and the many barriers thrown in the path

of people with physical disabilities, not just to rise to the international heights of a

notoriously difficult profession but also gradually to face and come courageously to terms with his disability.A multi-millionaire who began life in a fibro house in a working class suburb of Sydney, Moss is today a committed philanthropist, passionate campaigner for disability rights, and the founder of a global medical and scientific research foundation bringing hope to FSHD and other dystrophy sufferers around the world.

“What do you do about having a disability? You do your research, work out what the

solutions are and then start to educate those around you. You stand up and fight for what is right and just, you speak out and challenge the paradigms within which we live.

You challenge politicians, journalists, bureaucrats, friends and colleagues. If you are living with a disability, you can challenge the status quo, you can change the system; it is simply about having a go and educating those around us, never giving up and just telling it as it is.”

All profits from this book go to the FSHD Global Research Foundation and Fighting Chance Australia

SW_Cover_pbk_3pp.indd 1

4/11/11 4:23 PM

Bill Moss AM is a remarkable Australian businessman, ex-Macquarie Bank senior executive and disability rights advocate. He’s behind the newly published memoir, Still Walking.

“It’s all about gathering as

many chips in life as you can.”


scholarships | sa

Sir Charles Bright was a judge of the Supreme Court, chancellor of the University of Adelaide and chairman of Minda. He was on the committee, which eventually set up the Health Commission

When Sir Charles Bright died in 1983, Malcolm Penn, OAM, a blind lawyer, thought there should be something to memorialise Sir Charles. Malcolm asked if the family would be happy for a scholarship for students with disability to be established in his honour. The family gave their approval and contributed funds. By 1985, the first two scholarships of $400 each were presented.

As more students applied for scholarships, major organisations were invited to be involved. For many years now, the Royal Society for the Blind, Guide Dogs, Paraplegic-Quadriplegic Association, the Brain Foundation, SCOSA and MS Society, together with 5RPH, have provided scholarships, designated for particular students. Service clubs have also provided

funds for scholarships such as the Prospect/Blair Athol Lions, the Rotary Clubs of Adelaide and Brighton, and the Lions Club of Edwardstown.

With more students wishing to undertake arts-related scholarships, Arts SA was approached to support these students with a scholarship and SA’s Department of Further Education, Employment, Science and Technology provides scholarship for other students. The Trust has now been able to help more than 270 students and has given $270,000 in assistance.

The one-off scholarships of $1500 are for South Australian students with disabilities wishing to undertake post-secondary education at university, TAFE or other recognised institutions. Applications for scholarships for 2013 open this month and application forms can be obtained by phoning (08) 8261 6171 or visiting rphadelaide.org.au/scholarship.htm. – Rosemary Penn

Applications open for SA’s Sir Charles Bright Scholarship Trust

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books | tracey roberts

but some symptoms remain the same, such as loss of body temperature control, spasms and associated pain.

I’d like to highlight a couple of different spinal injury stories to convey just how fallible we as humans are and the difference between spinal injuries and spinal cord injuries.

Years before Peter’s horrifi c accident, my fi rst encounter of the life-altering effects of spinal cord damage is when my dear friend, Damon, sustained a serious back injury when he fell off the roof of a double storey house in 1999.

Severe hailstorms had swept through the southern and eastern suburbs of Sydney in April that year, smashing

Most of us take something as simple as walking from A to B for granted. Unfortunately, others are not so lucky.

Many individuals suffer unimaginable forms of paralysis each year due to car accidents, sporting injuries and even disease. Whilst [my uncle] Peter’s level of paralysis was as bad as it gets, other types of paralysis vary widely. The effects can differ

In 2010, Tracey Roberts found herself deeply involved, along with her family and the medical staff in the intensive care unit of the Royal North Shore Hospital, in caring for her uncle, Peter Bilsborough. A surfi ng accident had left Peter with severe spinal cord injuries and no chance of recovery. The Will to Live, The Courage to Die is a moving account of Peter’s fi nal months and Tracey’s own response to that experience. Following is an extract from her book.

Strong and courageous


books | tracey roberts

the roofs of thousands of homes. Damon, who was a volunteer fi re fi ghter at the time, was assisting in the recovery effort by fi xing tarpaulins to damaged roofs. At approximately 10am that morning, a gust of wind caught underneath a tarpaulin knocking him off balance, resulting in him slipping down the wet roof and falling 8m and landing feet-fi rst into the garden next door. The shock of the impact instantly travelled through his legs and spine, his lumbar 1 vertebra suffered a burst fracture with bone fragments going back into his spinal column.

Amazingly, Damon does not recall feeling any distinct pain when the accident fi rst happened. His body probably went into immediate defensive mode to shield him from the onset of pain, but to onlookers and fellow fi re fi ghters, there was no doubt he had sustained a serious injury. Fortunately, one of the volunteers on the scene had worked as a paramedic, so Damon received critical care immediately, potentially saving him from living the rest of his life as a paraplegic.

Damon remained conscious throughout the ordeal and initially thought he had just broken his leg because it was numb and he couldn’t move it. Seven hours later, in St George Hospital, after a myriad of tests, x-rays and an MRI, doctors fi nally told him he had a spinal injury and was maybe facing lifelong paralysis.

The extent of his fracture was severe, but the damage to the spinal cord could not be ascertained at the time due to swelling. Doctors said it was intact and that the limited movement in his legs was a positive sign and recovery was possible. During a mammoth

11-hour operation, whereby surgeons entered through the side of Damon’s torso, a T12 to L2 fusion was performed. After several months of rehabilitation, Damon was fi nally able to walk again. You would not necessarily pick him as a person suffering from incomplete paraplegia. Damon is able to walk because he still has his motor skills, but not his sensory skills. The only giveaway is that he has a slightly awkward gait as he walks primarily on his heels and takes short strides. While he has the ability to walk, the paraplegia has affected many of the muscles in his legs and lower torso, and this attributes to his gait because there is no ankle fl exion control, particularly in his left foot. In short, this means he cannot exert pressure through his foot so he can’t run or stand on his toes.

Recently, he had pins and screws put into the middle of the toes to relieve him from the pain of the “hammer toes” that had developed over recent years since his accident. Whilst Damon is exceptionally lucky to be able to walk at all, he is faced with a lifetime of associated complications that require continual management.

Damon’s injury illustrates the complexity of bodily function of the spinal cord. Lumbar 1 is just above the cusp of what is regarded as true paraplegia – that is paralysis of legs and a lifetime of getting around in a wheelchair. Damon’s form of incomplete paraplegia is called paraparesis, which is defi ned by weakness or partial paralysis in the lower limbs. Despite being able to control most muscles in his legs, Damon has distinct and signifi cant neurological loss of some muscles and nerves around his buttocks, groin, back of legs and feet. You

can draw patches of areas where he has sensation and areas where he doesn’t and you will end up with a pattern resembling your grandmother’s quilt cover. Even the inability to control the sweat glands of his legs and feet result in compensatory sweating of his upper torso and head in order to regulate body temperature, which is eerily similar to Peter’s own battle to maintain constant temperature.

Whilst Damon fi ercely fi ghts to maintain his autonomy and independence, he admits that the greatest loss is the loss of control of organs in the lower abdomen including sexual function, bowel and bladder control requiring him to use catheters daily. These are the fi rst functions to be lost because they branch out of the spinal cord at the lowest level. Unbeknown to most, these are the symptoms shared by nearly everyone who has any form of paraplegia.

Even though Damon did not suffer a catastrophic injury like Peter and the repercussions fortunately for him were not drastically life-changing, the complexities of spinal cord injuries do exhibit themselves as common traits in both cases.


“As fate would have it, just two days later on Easter Sunday, Peter’s tragic accident occurred.”

walked out of hospital, having to wear a neck and body brace for the next six months, whereas Peter died in hospital.

When Rob had finished wearing his body brace, he and his wife decided to head to the local Avalon Beach RSL Club. It was the evening of Good Friday and the band, Mental as Anything, was playing live at the club. Rob, still fragile and conscious of his recent injuries, decided to stand with his wife to one side of the room out of harm’s way. Shortly afterwards, they were joined by Peter and his girlfriend, Neire. They talked openly about Rob’s surfing accident and Pete expressed how pleased he was to see Rob safe and well after having sustained such horrific injuries to his back and head.

As fate would have it, just two days later on Easter Sunday, Peter’s tragic accident occurred. When Rob heard of Pete’s accident, he headed straight off to the hospital to visit Pete with good mate Steve Reynolds. Rob was still raw from his own experience and concerned with how to deal with Peter.

As Pete was still unable to talk, Rob could only lip-read his friend’s terrified words of how bad his

injuries were. Peter’s prognosis hit Rob terribly and he was emotionally guilt-ridden, distraught by the fact he had been able to walk again and Pete did not have the same fortuitous future. The distinct difference is Rob fortunately and astonishingly never suffered spinal cord damage.

When a person breaks their back and/or their neck, they have broken bone (vertebrae) and are sometimes able to have surgery to rectify the damage.

The spinal cord is different again because it is part of the nervous system that runs the length of the back from the base of the brain to a person’s waist. If you damage the spinal cord, the body is no longer able to receive messages or signals, almost like pulling the electrical cord out of your television. I have heard far too often people say, “Well, why didn’t Pete walk away? Lots of people suffer with broken backs and are okay.” The short answer is those who do walk again probably never suffered any long-term spinal cord damage. This is the fine line of the spine.

Extracted from The Will to Live, The Courage to Die by Tracey Roberts. Published through A & A Publishing and available for $34.99 at all good book stores or via aampersanda.com.

Likewise, the potential for a cure from embryonic stem cells to help individuals like Damon fully recover from his paraparesis applies just as much as it could in helping a ventilated quadriplegic like Peter.

Just six months before Peter’s tragic accident, one of his own friends – former world champion surfer Rob Bain – broke his back, ribs and sustained serious head injuries whilst surfing at Off Rocks, a popular surfing spot at North Avalon Beach. Fortunately for Rob, his outcome was one of the better ones.

Rob had been out surfing, as he so often is, when he came off his board, hitting his head on submerged rocks, leaving him with a spinal fracture at C7. He snapped his first rib next to the site of the spinal fracture, four compressions of his thoracic spine T2, T4, T5 and T7 and full head laceration, requiring over 100 stitches. This rendered him incapable of returning to the surf for several months.

The only similarity to Pete’s story is that Rob was initially taken by ambulance to Mona Vale Hospital and later transferred to Royal North Shore Hospital. The difference was, one week after Rob’s accident, he

Author Tracey Roberts, pictured, with her uncle Peter


different beats | anthea skinner

real job!

When I was in high school I had one big dream – I wanted to be a classical musician (yes, I was that nerdy!) I was good at it too. I had a scholarship to the best music school in the state and I spent my weekends playing in prestigious youth orchestras. But as I got older, and the standard of my peers improved, it slowly became clear to me that my wobbly body wasn’t allowing me to keep up with the pace. So when I was 16, I made a difficult decision – I gave up my scholarship and my dreams of working in a big orchestra. At the time, I was devastated, but although I never became a fulltime professional musician, I can now look back on 25 years working in the music industry. So in this edition of Different Beats, I’m going to look at some non-performing job opportunities available in the music industry.

Music teachers

Are you a vocalist or can you play a musical instrument? Do you like to share your skills with others? Then maybe being a music teacher is the job for you. There are teaching jobs available in all styles and at all ages and experience levels, from teaching infants to university students to adult beginners.

Being a music teacher is a very flexible job. You can give lessons in your own home, at a private music school or in a school or university. You don’t need any qualifications to start out as a music teacher, you just need to be able to play your instrument well and be good at communicating with people. However, if you want to teach classroom music (music history, theory and appreciation) or if you have dreams of being a head of department, you might consider going to university to do a bachelor of education (with majors in music) or you can add a graduate diploma of education to your degree in arts or music. Many performing musicians work part-time as music teachers.

Sound engineer

Are you good with electronics? Are you obsessed with getting the best sound out of your recording or playback equipment? Does going to a venue with a dodgy sound system drive you crazy?

Sound engineers are in charge of setting up microphones, amplifiers and other equipment to ensure the best sound for musicians and their audiences. Sound engineers can work at places like music venues, recording studios and radio stations.

Most sound engineers complete a TAFE course in audio engineering or sound production.

Arts administration

Are you good at organising people? Do piles of paperwork hold no fear? Can you do 15 things at once? Sounds like a career in arts administration could be for you. There are arts administration positions in all sorts of fields, from schools to theatres, television stations and ballet companies. Arts administrators work behind the scenes to make sure the show always goes on and are in charge of making sure everything runs smoothly, from booking the caterers to organising the insurance. There are university and TAFE courses that specialise in arts administration, although you don’t necessarily need qualifications for an entry-level position.

Front of house

Are you friendly and good with people? Do you like to watch all the latest concerts and shows? Try working front of house. Front of house staff

There are a myriad of careers in music other than performance, Anthea Skinner reports.

Get a

“My wobbly body wasn’t allowing me to keep up with the pace.”


are the people you see working in the foyer of any show. They do a range of tasks, from showing people to their seats to selling tickets and programs. They answer any questions that audience members have and are often in charge of assisting patrons with disabilities with any accessibility issues. Many people who work in this field get that chance to stand at the back of the theatre so that they can help any latecomers or other patrons requiring assistance. This means they never miss a show. What a perk! Most organisations provide on-the-job training for front of house staff.

Music journalist

Do you know a lot about music? Are you good at writing? Start up your computer and become a music journalist. Music journalists write books and articles about music (like this one). There are journalists writing about all sorts of music, from

classical to death metal, although it helps to have a broad range of interests. There are also plenty of types of writing to choose from including concert and album reviews, interviews with musicians, biographies, and textbooks. Some famous musicians even hire journalists to help them write their autobiographies. Many, but not all, music journalists hold degrees in journalism, but you can get started by writing an article and sending it to your favourite newspaper or magazine. The Australian Youth Orchestra even runs a course called Words About Music for budding music journalists, aged between 18 and 30, at their National Music Camp every January.

These are just a few of the many jobs available in the music industry. So if you love music, why not try making it your career? After all, there’s nothing more rewarding than working in a job you’re passionate about.

Anthea Skinner

The TIO may be able to help.

Problem with your telephone, mobile phone or internet service?

The Telecommunications Industry Ombudsman is a free and independent dispute resolution service for people with complaints about telecommunications or internet services.

If you have tried to resolve a complaint with your phone or internet service

provider, but are not making any progress then contact the TIO.

Website www.tio.com.au

Freecall 1800 062 058

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TTY 1800 675 692

Interpreter service 131 450

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NO MATTER HOW YOU ROLL—whether it’s in a front-, mid- or rear-wheel drive power wheelchair—you can now enjoy the advantages of the revolutionary Corpus 3G seating system.

Available on the power wheelchair bases shown above, the Corpus 3G follows the contours of the body

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The revolutionary Corpus 3G seating system… BROUGHT TO YOU ONLY BY PERMOBIL.

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link | leisure

My Dad is Different by Wendy Desmet (AuthorHouse)

This illustrated children’s book presents an educational, love-filled story, designed to teach children that parents with disabilities are different from other parents, but that doesn’t make them any less loving or less of a parent. When author Wendy Desmet’s son, Josh, was born, she and her husband, Michael, planned how they would deal with Josh’s inevitable questions about his father’s wheelchair. Those plans developed into My Dad is Different.

Booksharing: Successful Interaction with your Child and Books by Sue Gawned and Mary Lee (Noah’s Ark WA)

This book, penned by speech pathologists, is designed to help parents and carers of children and young people with disabilities. Sharing books with children has a profound influence on their language development, literacy and life outcomes. Children need to start their literacy journey with enjoyable book-sharing experiences. The Booksharing book and DVD provide a clear and concise step-by step guide. Photos and film clips demonstrate the book-sharing strategies that can be successfully adapted to engage every child. noahsarkwa.org.au

If I Can Do It… by Colin James (Lulu)

Using a wheelchair since age three, Aussie entertainer Colin James has achieved more than most could hope to achieve in a lifetime. Dubbed “Australia’s little giant of entertainment”, he has entertained thousands on stage, television and radio; written songs, poems, newspaper articles and an accommodation guide-book for wheelchair travellers; and presented many motivational addresses to groups and clubs. Somehow, he has also

found time to travel overseas, marry three times, pioneer competition dart-playing with a blow-pipe, and receive an OAM for service to the community. This book tells his whole story, warts and all. lulu.com

Cityglitter by Carla Caruso (Penguin/Destiny Romance)

Warning: self-promotion alert! This eBook is written by Link’s editor and is a romance, so has a few steamy bits (blush)... Christelle is like any other 20-something living in Sydney – except for one huge secret. She enjoys cocktails with girlfriends, luxury brand launches, gossip and shopping. There’s also the sizzling connection with her new boss, the gorgeous Jasper. Then Christelle’s younger, naïve sister, Trixie, arrives unannounced, and things begin to fall apart.

Not only does Christelle have to deal with her sister’s embarrassing mistakes, she also has to live with the fear that her escapades will reveal the truth: Christelle and Trixie are half-fairy, half-human and hidden beneath their clothes are a pair of wings. destinyromance.com

NO MATTER HOW YOU ROLL—whether it’s in a front-, mid- or rear-wheel drive power wheelchair—you can now enjoy the advantages of the revolutionary Corpus 3G seating system.

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and offers infi nite adjustments for a custom fi t. The armrests feature built-in channels for cable routing, greatly reducing the need for messy wire ties; while the legrests are curved for better support.

The revolutionary Corpus 3G seating system… BROUGHT TO YOU ONLY BY PERMOBIL.

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One hundred community groups across Australia, including 40 disability groups, have each been awarded $10,000 from Telstra’s Everyone Connected program to help them better access technology.

Speaking at a launch event in Darwin, Telstra Chief Executive Officer David Thodey said grant recipients included groups focused on education, indigenous development through technology, connecting people with disability and cyber safety.

“Some members of our community don’t have access to modern communications technologies and the enormous social and economic benefits and opportunities they bring, opportunities that most of us now take for granted.

“As people increasingly go online for both business and social purposes, the consequences of not being connected become much more profound. Telstra’s view is that access is fundamental and as an organisation we are determined to help people develop the skills and capability to go online and stay safe and protected while they are doing so – that’s what these grants are all about.”

One hundred organisations in every Australian state and territory are among grant recipients including the Darwin-based Mungoorbada Aboriginal Corporation, Deaf Children Australia, Melbourne, the Cerebral Palsy Alliance north of Sydney and Youth Futures WA near Perth.

“These organisations are working in communities that each have different needs and face different technology challenges. The Mungoorbada Aboriginal Corporation will use the grant to provide technology that will allow the Literacy & Numeracy trainer to regularly visit remote outstations to familiarise residents and young people with a computer. The Cerebal Palsy Alliance in Sydney will use the grant to engage young people with Cerebal Palsy to create an online community to increase connectedness, independence and confidence,” Mr Thodey added.

Mr Thodey said each of the Everyone Connected grant

recipients had been endorsed by a Telstra employee.

“Telstra team members are involved in many of our community development and sustainability programs including Telstra’s Kids Fund, matched payroll giving and employee volunteering,” Mr Thodey said.

Over the past 10 years, the Telstra Foundation has committed $40 million to almost 7000 projects.

For more information, visit www.telstrafoundation.com.

Everyone Connected

through Telstra community grants

Autism South Australia has developed an application to assist children with autism to develop and improve social skills

A seven-year joint study, led by Australian Catholic University’s Professor Deb Keen, looking at parent-focused interventions for children with autism, is one of the most comprehensive ever done.

The resulting book, Working with Parents of a Newly Diagnosed Child with an Autism Spectrum Disorder: A Guide for Professionals, can help parents cope with the diagnosis of a child with autism and provide some clarity around treatment options.

Professor Keen and Professor Sylvia Rodger from the University of Queensland worked with more than 50 families during their research. “We began working with these families shortly after diagnosis,” Professor Keen said. “This is a very stressful time for families as parents immediately start learning how critical it is their child gets early intervention, but professional programs are often limited with very long waiting lists.”

The book gives information on diagnostic criteria of autism, key characteristics, aetiology, prevalence, prognosis, and more.

Professor Deb Keen. Photo: Peter Waddington Photography.

Autism research looks at treatment options

breakthroughs

Telstra is proud to support Link Breakthroughs

‘Disablism’ could shape the future for young people with a disabilityA new study led by the University of Sydney hopes to shed light on how the experiences of young Australians with disability are shaped by discrimination.

The study, titled Disability and Ability: How Young People with Impairments Make the Transition to Adulthood, will follow the life experiences of 100 participants, aged between 19 and 26, over three years.

Discrimination towards people with disability – also known as ‘disablism’— can have a profound impact on lives, according to chief investigator Dr Nikki Wedgwood from the university’s Faculty of Health Sciences. “We tend to think of people with impairments as ‘that’ person with a disability rather than that student or that parent or that musician and so on, and so we tend to treat them differently – we might avoid them, or they might just be socially invisible to us. As such, disablism affects their sense of belonging and levels of inclusion in virtually every aspect of life, from peer acceptance at school, to employment, marriage and other relationships.”

The study is being funded by the Australian Research Council and carried out in collaboration with Deakin University.

Sixty per cent of ‘problem’ learners suffer poor visionSixty per cent of children who are ‘problem’ learners have been found to suffer from undetected vision problems warn optometrists.

Undetected vision problems are estimated to affect about one in four Australian children – or 600,000 nationally – which may contribute to potential learning diffi culties in reading, writing, viewing a whiteboard, computer use and other classroom activities.

Optometrists Association Australia professional services manager Jared Slater said: “Parents and teachers should watch for signs that a child may have a vision problem, including avoidance of reading and writing, lower comprehension and short attention span. These are sometimes incorrectly suspected as the outcomes of learning disabilities such as dyslexia or attention defi cits.”

Common vision problems among schoolkids can, with early detection, be managed or corrected by an optometrist.


The musings of

Peter C oulter

In attempting to explain my disabilities to people, I have often heard: “Oh, that must be the hardest one of all.”

I refer to the loss of certain senses via post-traumatic brain injury. My catalogue of deprivations reads like a litany of failures of nature to endow me with any semblance of humanity, including:

• Over 75 per cent blindness

• Deafness in one ear

• No sense of smell

• Disfiguring scar on face, and

• Steel plate in forehead

And these are only the physical, observable defects. While these are tangible and explainable and, to a limited extent, treatable, they are massive due mainly to the fact that they occurred in one fell swoop, or overnight if you like. The blindness prevents me from obtaining a driver’s license and impinges radically on mobility and, of course, safety. And as I am blind on one side of my body, the same side as my deafness, someone talking to

The Link columnist addresses scents – and sensibility.

me from that side is often neither heard nor seen.

To utterly ignore someone in a social setting is not exactly very social or polite, but sometimes quite handy. Selective amnesia or selective ignorance can be developed.

The most astute of my audience sometimes ask: “Of all you have lost, which sense would you most like to recover?” My answer is ready and immediate, a great surprise to most. “My sense of smell!”

I can adapt to life without perfect sight, indeed without any sight, I have good enough hearing to appreciate music and conversation, the scar has faded to a memory and I have had lots of fun setting off metal detectors in airports across Australia and in shops selling such devices. But I will never smell nature, appreciate totally fresh air, flowers, exhaust fumes, cooking odours, and this one surprises all but the most perspicacious of people, the smell of another human being. Why?

In the intimate world of physical relationships with the opposite

sex, all of the senses are involved and of vast import. Intimacy is not limited to or exclusive of any of them and as I have said, the other losses can be accommodated and compensated. Olfactory sense is irreplaceable, non-negotiable and can’t be faked.

As for other changes in my life, the most challenging, for those around me more so than for me, has been behavioural. Always forthright and honest to the point of rudeness I found this trait had become even more pronounced. On meeting someone for the first time, it was first-name terms no matter what and I would say, “OK, so you don’t like me. F*** off, I do not really give a s**t.”

I have learned to live with this, too. I have learned how to behave better and I have also got older so that now I believe I am old enough to say what I like and I genuinely do not give a stuff, like it or lump it!

I am not arrogant, but I hope I have learned a healthy conceit for myself.

“Olfactory sense is irreplaceable, non-negotiable and can’t be faked.”


what’s on

Girls Night In Cancer Council Australia 1 October 2012

5th World Summit on Arts and Culture 3–6 October 2012

National Down Syndrome Awareness Week 8–13 October 2012

Southwest Conference on Disability 9-12 October 2012

World Sight Day 11 October 2012 vision2020australia.org.au/events

Buddy Walk Melbourne 14 October 2012 Horsham, VIC Contact [email protected] downsyndromevictoria.org.au

2nd World Congress on Adult Guardianship Australian and International Perspectives Melbourne, Australia: 15-16 October 2012 Hilton on the Park Hotel, Melbourne

Spart: Creative Arts Festival 24–26 October 2012 Stanwell Park, NSW www.thejunctionworks.org

DisabiliTEA 2012 26 October 2012 Join us for a DisabiliTEA, to support the NDIS; 26 October 2012

21st Congress of the International Association for Disability and Oral Health 28–31 October 2012 Melbourne, VIC iadh2012.com

Art Activated Conference 2012 Desire and Destination 30–31 October 2012 Sydney

Working with People with an Acquired Brain Injury (ABI) 2 November 2012

Australasian Society for Intellectual Disability: Research to Practice Conference - 7-9 November 2012 Wellington, New Zealand

The 2nd AnnualDisability Employment Summit 19 – 20 November 2012 | Sydney Harbour Marriott

23rd PANDDA 2012 Conference, 23 November 2012 Venue to be confirmed 0408 878 538

Pathways 11 Conference 28–30 November 2012 Adelaide Convention Centre, SA pathways11.com.au

International Day of People of with Disability 3 December 2012

Disability Awareness Week 2–8 December 2012

We are talking to both young people with disabiliti es and their siblings without disabiliti es (both aged 15–25) about how disability aff ects or plays a role in their sibling relati onship and aff ects what happens in their lives during young adulthood.

If either you or your brother or sister have a disability and you are both aged 15-25, you can take part in an interview or by your own creati ve response. Accessibility and communicati on supports available.

For details, see www.siblingsanddisability.com or contact Ariella Meltzer at the Social Policy Research Centre (University of New South Wales)[email protected] or (02) 9385 3747.

siblings, disability and young adulthood

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Documents

WITH SOUND - linkonline.com.aulinkonline.com.au › ... › 24 › link_21_4_2012_october.pdf · journey to recovery 32 Disability art is celebrated at the SALA Festival 34 Bill Moss