let’s dance! how the artform is helping youth in...

June 2011 | Volume 20 Issue 2

JAN MCLUCAS ON BEING THE PARLIAMENTARY SECRETARY FOR DISABILITIES & CARERS

LET’S DANCE! HOW THE ARTFORM IS HELPING YOUTH IN LEAPS & BOUNDSAN INSPIRING WOMAN WITH MS WALKS AGAIN

DALE BAKER WEIGHS IN ON THE EUTHANASIA DEBATE

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Cover story

20 A unique dance project has seen these participants – Nicola Bray, Mikayla Davey, Brooke Langdon and Liam Moss – move about in leaps and bounds.

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

June2011—Vol20/2 linkmagazine 3

4 Ed’s letter

5 Letters

6 Link news bites

8 Senior news and new products

10 Sports news, from Cycle Power Vietnam to a soccer

milestone

12 Sports profi le on Tim Maloney, who spent 22 years

in the National Wheelchair Basketball League

13 Dale Baker weighs in on the euthanasia debate

14 Werner Haymann, who has motor neurone disease,

shares his thoughts on losing his voice

16 Carmel Turner, who has MS, can walk again

following controversial stem cell therapy

18 Q&A with Parliamentary Secretary for Disabilities

and Carers Jan McLucas

24 Wayne Eckert looks into a female prisoner’s death

who had mental illness

28 Dignity for Disability MLC Kelly Vincent advocates

implementing a Community Visitors Scheme for

at-risk people with disabilities

30 Johnny Mackay ponders the power of the wedding

ceremony

32 Th e Summer Foundation is evaluating the quality

of life for young people in or at risk of entering

residential aged care

34 Bruce Mumford continues his family’s road trip

along the Great Ocean Road

37 Robbi Williams’ column

40 Entertainment reviews, interviews and more

42 An interview with Stella Young from ABC Ramp Up

43 Q&A with fi lm guru Sofya Gollan

45 Breakthroughs

46 Th e musings of Peter Coulter

47 What’s on

48 Subscribe to Link

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4 linkonline.com.au June2011—Vol20/2

Sometimes it may feel like time spent on social networking sites is time just being frittered away. And, at times, it can be. But the flipside is the powerful ability to connect and to raise awareness.

This point was highlighted recently to me by a Facebook community page created for baby girl Lilah Sophie Bishop who has an inoperable brain tumour. Her parents, Andrea and Nic Bishop, created the page to help celebrate Lilah’s life and to encourage people to live for each day and

not sweat the small stuff. They celebrate their daughter’s birthday in months, because she won’t see them in years.

Lilah was born on October 20, 2009, and according to doctors, was not meant to survive the pregnancy and certainly not live beyond her birth. A brain tumour, discovered in utero at 20 weeks’ gestation, occupies nearly three-quarters of her skull. Lilah’s brain does not have the centres required for breathing, controlling temperature, hormone levels, movement, sight or the ability to learn − and yet she can do all.

In marking her 18-month milestone, her parents held a Live Life for Lilah challenge, in which they encouraged people to take time out of their day to “live in the moment and do something wonderful”.

Young friends of the family, Janise Warne and Georgia Wise, responded by taking a photo of Lilah to R&B singer Chris Brown’s Adelaide concert. The singer happily posed with her piccy, right, and also put it up on his Twitter site, further promoting Lilah’s parents’ message about living in the moment.

Others have also used social networking to help get their views heard. Link reader Ceridwyn Owen recently spread her message about the lack of accessible public transport on Link’s Facebook page (see the opposite page). Let’s hope the powers-that-be are all ears!

Similarly, Dignity for Disability MLC − and Link columnist − Kelly Vincent says she rose to Parliament following the success of a Facebook page she created in which she vented her frustration at her long wait for a wheelchair. Politicians sat up and paid attention.

So, next time you feel guilty for spending time on sites like Facebook, don’t be so hard on yourself. Something that catches your eye may, in fact, help create a change somewhere in the world.

Hope you enjoy the issue!

Carla Caruso, Link editor

from the editor

Delve deepA two-day workshop, DELVE, was held by the Disability and Arts Transition Team in April. The workshop, involving Adelaide artists and led by interstate guest artists Sofya Gollan and Daniel Kojta, covered the topics of writing for screen, new media, and discussions of art and disability. A major focus of the event was to establish a network of local artists with a disability. On the last night, a public screening of short films and a forum was held at the Mercury Cinema. The screening showcased short films by artists with hearing impairment and disability, curated by filmmaker Sarah Tracton who is deaf.

Chlorine Dreams film by Sofya Gollan

Not the Usual Victim film by Sofya Gollan

(also starring actor Joel Edgerton)


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:

GPO Box 2100, Adelaide, SA, 5001 or email it to [email protected] Please include your postal address (not for publication). The best letter wins $50

self, which is great. Another bonus has been that he’s dropped weight he’d gained.

It was the careful monitoring by his doctor that allowed my brother’s health situation to improve and for him to have a better outlook again.

There needs to be more good health professionals like this, who take an interest in their clients and who care about their wellbeing.

John, Rose Park, SA

Your views on Facebook

Link Disability Magazine is on Facebook. Befriend our page and feel free to air your views! Link reader Ceridwyn Owen recently brought up a hot topic, regarding accessible public transport, on the page, as follows…

Ceridwyn Owen: Any Adelaide wheelchair users tried to use public transport lately? It does not seem any better than when I tried five years ago. I ring Adelaide Metro, who put me through to a woman called Kirsty at Serco, who then communicates with my local depot who may or may not remember to put on an accessible bus for me at the time I need it! Get with the program, Adelaide Metro.

How about an interactive web booking page? If 50 per cent of buses are wheelchair accessible (2006 figures), how about alternating them on all routes, or having designated times for accessibility? We can fix this people!

Stefan Maguran: I am still waiting for an answer from them, regarding hailing buses by blind people. I’ve asked the question half a year ago.

letters to link

Winning letter – Movie magic

Thank you for compiling this great publication.

Upon reading Laura Greaves’ piece, Outside the Box, in the April issue, I thought of several other great movies that explore the lives of people with disability and those who have upheld their rights, which should be included in the list.

These are A Beautiful Mind, Beautiful Dreamers, True Confessions, Mr Holland’s Opus, and The Soloist.

Peter Kinson, Toowoomba, QLD

Simply chuffedIt was with considerable delight that I read my article in the recent edition of Link Disability Magazine [Riding High story on Danyele T. Foster’s passion for the Riding for Disabled Association]. I was quite chuffed!

My thanks for putting together such an informative and topical magazine.

Danyele T. Foster, Innisfail, QLD

Life and deathThis can’t be it, can it? If so, what’s the point? The universe is mostly untouched and unexplored. We have done a fine job of domination and destruction of our planet, there must be more we can stuff up?

So along comes death, but do we really cease to exist and lose all bodily powers or do we just start again a bit wiser and more thoughtful?

Okay, the Bible says “ashes to ashes, dust to dust”. Is the book just a collection of some fact and some fiction? If we die, is this the end or just the start of a new chapter as part of the journey of life?

Nobody knows what happens after death. A higher power I don’t argue must be. Who and what do you believe?

Matt Elder, Waterfall Gully, SA

Caring health professionalI have a younger brother with an intellectual disability. Recently, he was taken off a medication by his doctor, which he once needed, and there has been a marked improvement since in his behaviour.

My brother no longer appears as nervous and stressed as he had gotten to be and seems to be back to his old, positive


news bites

Chisholm and Wallara form partnership A partnership, aimed at making a real difference to people at risk from social exclusion, has been formed by the Chisholm Institute of TAFE and Wallara Australia − a leading provider of support services to adults with a disability in the south-east of Melbourne.

The partnership, launched in April, involves a number of initiatives, including a new Vocational Preparation program for 10 young adults from Wallara’s Life Options program, a unique drama company, which will produce a performance for the International Day of People with a Disability, and the creation of a sensory garden for Wallara clients by Chisholm landscape and building students.

Wallara Australia chief executive officer Phil Hayes-Brown, pictured, said: “The young adults, who attended the Chisholm open day recently, were thrilled to experience real campus life and this opportunity will change their world and their perception about what they can achieve.”

Livable Housing Australia launchesA new not-for-profit organisation, Livable Housing Australia, is being established to encourage those constructing new homes to comply with design standards that make homes more accessible.

The National Dialogue on Universal Housing Design, a group bringing together the government, the residential building industry and the community sector, met in April to progress such guidelines.

Parliamentary Secretary for Disabilities and Carers Jan McLucas said: “Livable housing design aims to make homes easier and safer to use − for seniors, people with temporary injuries, and families with young children and people with a disability.”

Leaders of the housing industry and disability sector have agreed to an aspirational target that all new homes will be built to reflect the new standards by 2020.

Study to record benefits of traineeships and apprenticeships

A national study will look at the social and economic outcomes for young people with a disability, who complete apprenticeships and traineeships.

Researchers at the Curtin University Centre for Research into Disability and Society (CRDS) in the School of Occupational Therapy and

Social Work will lead a consortium with WA organisation EDGE Employment Solutions and peak bodies Group Training Australia and National Disability Services to determine what positive outcomes result if someone with a disability completes an apprenticeship or traineeship.

The project will receive $405,000 over a three-year period and is one of five national competitive grants funded by the National Centre for Vocational Education Research.

Professor Errol Cocks, the Centre’s director, pictured, said the findings could ultimately encourage greater participation in apprenticeships and traineeships. “We believe the study will indicate that people with disabilities achieve better outcomes from engagement in work and earning an income than relying on welfare and undertaking alternatives to employment.”

Know someone worthy of an award?

Nominations for the 2011 National Disability Awards are now open. Nominations are open to people with a disability who have achieved something remarkable or made a significant contribution to the community, and individuals or groups, who have contributed to the disability sector.

If an individual or organisation inspires you, nominate them for a National Disability Award by visiting idpwd.com.au or phoning 1800 440 385.


The 2011 award categories are the Minister’s Lifelong Achievement Award, Young Disability Challenge Award, Business Award, Local Government Award, Social Inclusion Award, Inclusive and Accessible Communities Award, and Health and Wellbeing Award.

The categories are aligned with the National Disability Strategy priority areas, a 10-year-strategy to improve the lives of people with disability, their families and carers. Nominations close at 5pm AEST on Friday June 29.

In brief • David Holst, pictured, the chair of the Disability Speaks steering committee, is adamant that a name change is needed for the proposed National Disability Insurance Scheme. “When the federal government gets the final NDIS draft, it must be branded with a new name or it will fail,” Holst says. “There is no way that any scheme with ‘insurance’

as part of its title will generate the popular support it requires to be accepted by the wider community.”

Disability Speaks is a not-for-profit, bi-partisan, self-funded group.

• Prime Minister Julia Gillard has announced new budget funding of $200 million to provide extra support for students with disability in schools. The More Support for Students with Disabilities initiative will deliver new services, equipment and support, including access to special equipment in classrooms, like audio and visual technology, and adapted curriculum, tailored to the latest research and expert advice. Government, Catholic and independent schools are eligible for the support. Students will receive the benefits of the initiative by the time school starts next year.

• Not-for-profit organisation Standards Australia has set a new standard for automatic fire detection and alarm systems for those with hearing impairment. This includes the use of vibration, low-frequency sounds and visual alarm devices.

• Oscar-winning actress Catherine Zeta-Jones revealed she suffers from bipolar disorder after checking herself into a mental health facility in April. Some say her revelation could help dispel the stigma surrounding the disorder.

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senior news

Disability and aged care providers collaborate to build Aussie-first solution

VIC Australian of the Year Simon McKeon officially opened disability services provider Wallara Australia’s pioneering new headquarters in Dandenong in April.

The site is an innovative co-development between Wallara Australia and aged care specialist Wintringham, which was inspired by the growing nationwide problem of ageing parents who are no longer able to provide care for their children with disabilities.

The state-of-the-art, highly integrated facility was funded by both the Commonwealth and state governments and blends aged care for homeless people with different accommodation options and specialist, high-support services for adults with a disability. The unique facility, designed by award-winning architect Allan Kong, is an Australian-first solution for a growing national problem.

Wallara supports a number of adults with a disability, who are over 50 years of age and whose parents are over 80. These parents and others like them can now have the option of living in the Wintringham aged care facility on the same site as their family member with a disability, supported by Wallara. This integrated support promotes continuity of the family group and provides vital peace of mind for the parents as their children receive ‘rites of passage’ into an aged care facility.

Wallara Australia chief executive officer

Phil Hayes-Brown at the launch of the

new Dandenong headquarters.

FilmThe Long Goodbye

Our brain makes us who we are, giving us our memories, our ability to think and our sense of self. However, all this is slowly stripped away for a person living with dementia. The

Long Goodbye follows the journeys of three families living with dementia as they struggle to maintain the identity and dignity of those they love. Filmed over a three-year period, the documentary celebrates the capacity of the human spirit to search for meaning and hope when the end is inescapable. It was produced by Luminous Films in association with Screen Australia, Screen NSW and the Australian Broadcasting Corporation. Order DVDs via roninfilms.com.au.

BooksIf You Ask Me by Betty White (Ebury Australia)

It-girl Betty White delivers a hilarious, slyly profound take on love, life, celebrity, and everything in between. Drawing from a lifetime of les¬sons learned, seven-time Emmy winner Betty White’s wit and wisdom take centre stage as she tackles topics like friendship, romantic love, ageing, television, fans, love for animals, and the brave new world of celebrity.

Fast Living Slow Ageing by Kate Marie and Christopher Thomas (e-book)

We’re bombarded daily with conflicting messages about how to reverse the ageing process. But author Kate Marie’s Fast Living Slow Ageing cuts through the hype in favour of what has been proven to slow the ageing process and promote peak physical and emotional

health, leading to a full, vital, and longer life. Finding herself “fat and frumpy” at the age of 40, with poor eating habits, little exercise and a tendency to overindulge in alcohol, Marie was diagnosed with depression. After a frightening reaction to prescribed anti-depressant drugs, Marie sought alternative solutions, which eventually lead to a hormone and supplement plan that began to awaken her body. The tome is now available in e-book format from online retailers, including Amazon.com and the Sony Reader Store.


new products

Off the shelf

Logical sense

Anne-Marie Howarth has had incomplete paraplegia since an accident in 2005. She found one of

her major expenses was urinary catheters. Knowing a lot of people re-used the items as a consequence of the cost, she has since started a business

importing catheters to Aussie shoppers, which she says are much more affordable. paralogic.com.au

Push-button appeal

The new Bellman & Symfon Push Button Pendant, $141.40, allows the wearer to activate other Bellman receivers in the home, alerting another resident or onsite carer if help is

needed. Ideal for carers with and without a hearing impairment, the pendant can activate receivers that flash, vibrate and light up, alerting them that their loved one needs assistance. tunstallhealthcare.com.au

Puppy love

Snare a sterling silver Guide Dog charm, hand-crafted exclusively for Guide Dogs SA.NT by Scott Anthony, of pureENVY Jewellery. Cost is $50, plus postage and handling. Order

via Guide Dogs SA.NT on ph 1800 GUIDE DOGS or guidedogs.org.au

Full tilt

This tilting wheelchair from the Aidacare health care group is designed to provide comfort and pressure-relief for long-term wheelchair users, rehabilitation patients, and people with disabilities,

which restrict their posture and movement. The Relax Tilt in Space wheelchair, $2195, features adjustable depth and width that permits it to be customised to individual preferences or for multi-use in age care and medical/rehabilitation situations. aidacare.com.au

Do you need help to live independently at home? Commonwealth Respite and Carelink Centres are here to help.

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• Arrange help for carers to take a break from their caring role (respite)

To contact your local Centre call Freecall™ 1800 052 222*

To fi nd your nearest shopfront visit www.commcarelink.health.gov.au

For emergency respite outside business hours call Freecall™ 1800 059 059*

Carer Advisory and Counselling Service For family carer support and counselling you can contact your state or territory Carers Association on 1800 242 636*

* Calls from mobile phones are charged at applicable rates

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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

sport

Cycle Power Vietnam will help to give people with disability a fair go

Victoria’s Disability Sport and Recreation will host the inaugural Cycle Power Vietnam tour in July, aimed at raising funds to enable people with disabilities to be given a fair go.

Cycle Power Vietnam is a 13-day, 540km cycling challenge from Hanoi to Ho Chi Minh City, departing on July 16. Funds raised by participants will go towards increasing opportunities for people with disabilities in Victoria.

Led by champion handcyclist and disability sports ambassador Gary Connor, who has paraplegia, the trip provides a once-in-a-lifetime opportunity for up to 20 people, with and without disabilities, to cycle across Vietnam. Connor says: “Sport has been vital in my road to recovery following a workplace accident 22 years ago. Purchasing my handcycle has allowed me to enjoy bike riding with my kids on weekends and provided me with the opportunity to compete in cycling events throughout Australia. Cycle Power Vietnam will be the adventure of a lifetime.”

Connor will be joined by an array of people from diff erent backgrounds and life experiences, including Sam Bramham (an amputee and 2004 and 2008 swimming gold medallist and world record holder), Ray Losionek (a double-below-the-knee amputee), Nick Larionow (who has cerebral palsy and is a 2004 Paralympic shot put bronze medallist), Ron Fenton and his son (a police sergeant, who has a partial disability following an on-the-job shooting incident), Gary Patterson (an able-bodied businessman and philanthropist), and Belinda Carro (a brain tumour survivor and mother-of-three).

Soccer milestone

In Adelaide, a soccer skills program for children with autism and Asperger syndrome has been jointly funded by Parents Assisting Kids with Autism (PAKA) and the South Australian Sport and Recreation Association for People with Integration Diffi culties Inc.

And, this year, PAKA SOCKA marks its “big 200”. As in, more than 200 kids have been part of the innovative, inclusive service since 2007. Not a bad eff ort for the small group of fi ve parents from PAKA indeed!

Nutrition bite!

Th ink there’s nothing wrong with adding salt to your dinner? Th ink again! While our bodies need a small amount of the sodium found in salt, there is enough naturally-occurring in many of the foods we eat to supply most of our daily needs. So, here are a few handy tips for reducing the salt in your diet!

• Substitute salt when cooking for fl avoursome alternatives like garlic, pepper, herbs, spices, and lemon or lime juice.

• Whip up an easy salad dressing using olive oil, balsamic vinegar and fresh herbs. Yum!

• Here’s an easy peasy, do-it-yourself salt-free pasta sauce idea − lightly fry chopped Spanish onions and vine-ripened tomatoes in olive oil and garlic, and add fresh basil, pine nuts and lemon juice. Voila!

• Peckish? Try healthy snacks like fresh fruit, and unsalted nuts or rice crackers.

Anthea Bennetts is a personal trainer and director of Dynamic Group Personal Training in Mitcham, SA. dynamicpt.com.au


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


Tim Maloney, 43, is a sporting inspiration. The Adelaidean has been involved in many kinds of wheelchair sports since the age of 10 - from motorcycling, sailing, scuba diving to his passion, basketball.

Maloney was only nine months old when his spine was damaged by cancer, which left him with incomplete paraplegia. He had further surgery when he was 11, which unfortunately didn’t work - his right leg above his knee was amputated. He would also use a wheelchair for the rest of his life.

Maloney also has just one kidney, though he says he’s still “very healthy”. Having one kidney means he still has 95 per cent of kidney use. He just is more conscious with ensuring he looks after himself through sports and healthy living.

“I believe the glass is always half full – believe in, never give in,” Maloney enthuses. “There is always a pathway or processes to assist you to get where you want to be. It doesn’t necessarily have to be an easy path or a short path, but it exists and it’s up to you and the people around you to problem-solve whatever the situation is, so you can get to where you want.”

sports profile | timmaloney

Aiming high /

Left: Tim Maloney on a Red Dust Role Models tour in Northern Territory’s Kintore. Right: Tim takes a leap of faith.

Maloney’s uncles first got him involved in sports. In the school holidays, they would take him to a wheelchair sports recreational holiday week, which offered athletics, basketball and swimming.

His sporting career started on the path of athletics, where he competed for seven years with a highlight at the age of 17 - winning the world record in the 800m for wheelchair racing.

Later, he turned to wheelchair basketball, playing for teams including Adelaide Thunder, the Wollongong Roller Hawks and the Bradford Bears in the UK.

Disappointment came when Maloney was not selected in the wheelchair basketball for the Seoul Paralympics in 1988. But, the dream wasn’t over. He joined a training camp in the US instead and, from there, was able to attend Kentucky University for three years, including playing for the university’s WheelKats team. Later, he went on be part of the team that won the wheelchair basketball gold medal in the Atlanta Paralympic Games in 1996.

After 22 years in the National Wheelchair Basketball League – including being on the winning team for seven championships - shoulder injuries caused Maloney’s playing career to come to an end. Still, he has been coaching for the past three years, including as the replacement coach for Italy’s club team in the first division.

Maloney’s busy sporting life doesn’t stop him from volunteer work either – he’s also involved in the Messenger Youth Sports Award and the non-profit Red Dust Role Models, which offer positive role models to disadvantaged youth in remote communities.

Tim Maloney clocked up 22 years in the National Wheelchair Basketball League, but his love for sport doesn’t end there, as Emmah Money reports.

Believe in, never give in!


opinion | dalebaker

Former SA Liberal Party leader Dale Baker writes on life with motor neurone disease and why he’s in favour of voluntary euthanasia.

Having never had any illness of any kind for 69 years of hard living and being used to telling my body what to do when and how often it comes as a bit of a shock that at some time in the future your body may not take orders any longer. That is exactly the long term outlook for motor neurone disease.

I first noticed a slurring in my speech in the last week in September 2008 at an AFL grand final function when some of the guests thought I had got into the champers a bit early, I tried to convince them no, but they replied it is obviously not the water.

I thought nothing of it at the time but when it did not completely disappear in a couple of weeks, I went to see my medical advisors who suggested a scan and suspected a slight stroke. Many weeks later after scans, reports, doctors’ visits and consulting a speech pathologist, nothing had changed. This process took about nine months.

I was due to go to America to stay with friends in Los Angeles and told them of my frustration with no diagnosis. They demanded action before I left and organised for me to see their son at two days’ notice, who is head of the Neurology Department at the Royal Melbourne Hospital. He kindly said: “Go and have a good holiday with my folks and we will do more tests when you get back but I think it is motor neurone disease.” The rest is history.

I went from steak to soup in six months and from soup to PEG feeding [percutaneous endoscopic gastrostomy] in another six months. This tube through the stomach is magic and I am maintaining weight and, apart from speech, am living a very active and normal life.

The main changes to life are the carrying of a small whiteboard to write on, which people soon get used to. It cuts out small talk, so we all get to the point very quickly. The other main change is I take my own packaged liquid food wherever I go, including overseas, plus a syringe to administer. Works very well and not a hassle. Champagne is fine through the PEG − no taste, but same kick. The only drawback is on visits to friends they now give me all their cheap wine.

I am VERY lucky that the disease has not progressed past tongue and throat and I have no signs of any spreading to

limbs. Quality of life so far is quite manageable and I am one of the fortunate ones with this disease.

Life after politics has been frantic and you wonder how you put so much time into public life. We have managers in our business interests of farming, vineyards, wine, flowers and State Swim Victoria, which teaches children to swim, but, as troubleshooter, there is plenty to keep me busy and in everyone’s way.

Throughout public life, I have always been pro-choice on all issues whether women’s issues, gambling, stem cell [therapy] and, of course, euthanasia. All of these matters should be a matter of individual choice and not interfered with by supposed do-gooders in Parliament, who in many cases are not acting on their own conscience, but on pressure from minority or religious groups and the mumbo-jumbo they preach and tell us they believe in.

It is surely in the democratic society we live in my right to choose to end my life. I may choose to pass that final decision onto my family or a medical practitioner, but I do not want to have that decision dictated by the Parliament.

Voicing his support

It is surely … my right to choose to end my life.


Tasmanian Werner Haymann was diagnosed with motor neurone disease in September 2010. While he has now lost his voice and has other progressing symptoms, he is still quite mobile. As Haymann says: “MND is slowly curtailing my physical abilities, but it will never conquer my mind. Being an incurable optimist makes me never give up.” This is his story.

Unless you are a singer or maybe an actor, you don’t really ever think about your voice much. For most of us, a voice is something we just take for granted.

And yet, a voice, speech, is a very complicated matter. Most of us can walk before we can talk and acquire many other important skills before we say even the most basic words. From there it takes many more years before we have learned the art of becoming what we call ‘articulate’. Boys think about their voice mostly when it breaks, hoping for a nice deep tone, a sign of good things to come.

Now that I have lost my voice, I think about it every hour of every day. It served me well up to now. It could speak fluently in two languages and, at a pinch, it could get by in two or three others.

My early working life skills were all about acquiring the necessary knowledge to put my hands and brain to the task of carrying out my trade and my voice helped me to ask the right questions and give the correct answers to get me to the stage where my skills allowed me to get on in life. With the help of my voice, I travelled the world, met many wonderful people, read stories to my children, talked to my animals, loved to sing songs (not very well but with gusto), told jokes, made people laugh and sometimes cry.

Eventually my voice became the most important tool in my professional life. It helped me to lead people, guide them, often gave them direction and confidence, forged teams, learned to make

motor neurone disease | wernerhaymann

Silence is…


golden?speeches, praise, give thanks and when required give truthful feedback. My voice helped me to become a skilled negotiator and mentor to younger colleagues.

Now that I have lost my voice, I realise that the ability to speak has been crucially important in making me the man that I am now. That is the man that I was until now. My world has become a different world, because I have lost my voice and I am becoming a different man.

Simple things I did without thinking have become enormous obstacles. The only record of what my voice once sounded like is the brief message I recorded on the answering machine. Occasionally I listen to it just to remind me of who I once was.

The people that know me, especially those who love me − my family and friends – understand, of course, and try to make things as easy as possible for me, even to the point of trying to pre-empt what I am trying to express in my sometimes totally incomprehensible attempts.

I am ashamed to admit that this can make me irrationally ill-tempered at times when they get it wrong and my frustration gets the better of me. I know that it has on occasion hurt the person that is with me every day and I know cares so deeply for me and suffers just as I do. For that I apologise.

I have now stopped trying to talk to strangers because it usually results in looks of alarm and people shouting back at me because they seem to automatically presume that I am a) a blithering idiot, b) deaf, c) a lost foreigner or d) drunk or on drugs. I now carry a little card with me that reads: “I have a medical condition that affects my speech. Thank you for your patience.”

This works quite well and seems to relax people to the point, where they are actually becoming quite helpful, but I can see the looks wondering: “What’s wrong with the poor bastard?” Sometimes things can be quite funny and I even allow myself to play a little game with our newsagent, usually the first person I encounter in my day-to-day dealings. I know I have got him intrigued because I never talk and I haven’t flashed my little card at him yet.

Usually it goes like this: “Morning cobber.” (He calls everyone cobber). From me: “Grunt.”

Desperately trying to get me to talk now: “What’s going to happen today then?” “Grunt.”

“Ah, not much, hey?” “Grunt.” “All right, cobber. See you tomorrow, you can tell me all about it then.” “Grunt.”

I see him follow me with his eyes wondering what the hell is wrong with that weirdo.

Yes, losing my voice means many things. They say silence is golden, but I can’t agree with that any more. There is one thing I haven’t lost though, I can still laugh and I laugh a lot, often inappropriately, but who cares? Laugh with me. It helps!

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A snapshot of motor neurone diseaseMotor neurone disease is a progressive, degenerative disorder, which affects nerves in the body’s upper or lower parts. Symptoms can include difficulty swallowing, limb or facial weakness, slurred speech, impaired gait and muscle cramps.

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spotlight | stemcelltherapy

Carmel Turner can walk again following controversial stem cell therapy, as Kristy McCormick reports.

Like a miracleCarmel Turner wants to get a message of hope out there. Having undertaken an incredible journey, 37-year-old Turner believes her role now is to share her story and her hope for a better future for those with Multiple Sclerosis (MS).

Turner was diagnosed with MS in 2009, just months after the birth of her fi rst child. While Turner believes she suff ered symptoms for up to 12 years earlier, the birth of her daughter triggered a rapid deterioration. Daughter Grace was three months old when Turner began suff ering severe attacks of debilitating pain and extreme fatigue.

Th e diagnosis of MS was a shock. MS is a chronic disease of the central nervous system, often aff ecting young adults and more often women. Th e cause remains unknown, however, the disease process is such that the body’s own immune system (faulty white blood cells) attacks the protective sheath surrounding nerve fi bres of the central nervous system.

Symptoms of the disease can include problems with vision, diffi culty walking, extreme tiredness and changes in refl exes and co-ordination. Th e other well-known fact about MS is that it is incurable.

Turner was initially diagnosed with the relapsing-remitting form of the disease. In general terms, this is categorised by acute phases of the illness – often termed ‘attacks’ − followed by periods of remission, where the disease can be inactive.

In Turner’s case, however, the remission period didn’t materialise. Her attacks continued to worsen over a short period, and she says: “Th e progression of my disease was pretty rapid. Quite quickly I went from a walking stick to a wheelie walker to a wheelchair. Just before treatment, I was pretty bad and I had to do something, otherwise I knew that a

Carmel Turner, right, with a friend learns to walk again.

It’s incredible – it’s like a miracle.


nursing home is where I was going to end up.”

That’s a pretty harsh truth for someone so young and with a daughter and husband to consider Turner wasn’t going to sit back and let this disease take over her life. So, after much research and when the conservative treatments initially prescribed weren’t doing what they promised, Turner and her husband, Scott, decided to take the next step themselves.

In November 2010, they travelled to Canberra for her to undergo stem cell therapy, with the hope of her regaining some function and the chance to live her life the way she’d planned.

Stem cell therapy is a term that covers any treatment using or targeting stem cells. The treatment Turner undertook was essentially a bone marrow stem cell transplant.

Turner first undertook chemotherapy to destroy faulty white blood cells produced in the bone marrow. Stem cells were then harvested from her bone marrow, frozen and stored. A further course of chemotherapy followed, destroying any remaining bone marrow cells.

Finally, harvested stem cells were reinfused and numbers of healthy white blood cells increased, indicating

bone marrow cells had begun to regenerate. In simple terms, the process is likened to rebooting the immune system.

Although it sounds a traumatic process, Turner says the discomfort of the treatment was nothing compared to the poor quality of life that she lived with prior to treatment. As she says: “You’ve got a chance and virtually your quality of life is zero, what would you choose? You know I lost my hair − that was the worst part of it.”

And, at the end of it, the results were amazing. Turner has packed away her wheelchair and is working hard each day to get her body moving again. She is working with a trainer, exercising on a treadmill and a bike and states that her goal is to run again. “It’s incredible − it’s like a miracle. It’s like you’ve been through this rollercoaster ride and you’ve been to hell and now you’re coming back. You can see the light and there is hope.”

Although Turner feels blessed to be given what she sees as a second chance at life, she is very clear on one point – this is not yet a cure. She states: “It definitely isn’t a cure. I want to make that very clear. But what it is is that I’m in remission until I have another attack. Basically though, the attacks have stopped.”

Jeremy Wright, the executive director of MS Research Australia (MSRA), agrees. He says this treatment can be seen as appropriate only to a small minority of those with MS. He goes on to say that although specific trials are not being carried out in Australia at present, trials are being carried out overseas and they are watching those developments with interest. Though Wright says other new treatments are being trialled regularly and hope still remains that future treatment will be focused on regenerative medicine and, ultimately, a cure.

And as for Carmel Turner’s future? At her three-month scan, Turner was overjoyed to learn there were no new lesions, which means no new disease activity. She is not taking any medication and, most importantly of all, is enjoying the pleasures of family life again. You couldn’t ask for much more.

For more information on stem cell therapy and the latest research and clinical trials in MS, visit msra.org.au.

From left: Carmel in a wheelchair after MS diagnosis. Carmel with three-year-old daughter Grace Elizabeth Turner. Photo: Rodney Dekker. Carmel Turner ties the knot with husband Scott in 2005. Photo: Michael Gibson.

Kristy McCormick is a freelance writer and occupational therapist, based in Adelaide.


interview | janmclucas

Senator Jan McLucas was appointed as the nation’s new Parliamentary Secretary for Disabilities and Carers last September, replacing Bill Shorten in the role. Link put some questions to her.

You have taken over the disability portfolio at what seems a pinnacle time, including the Productivity Commission Inquiry into a National Disability Care and Support scheme. Is this an exciting time for you?

Absolutely, it is most certainly an exciting time to be part of the disability portfolio. I have had the privilege of working with the disability community for a number of years now.

While disability issues have often struggled to attract headlines and has for a long time been ‘out of sight, out of mind’, I think we are turning the corner in Australia. We’re now having frank discussions about disability issues, governments have it on their agendas, the broader community is aware that the system isn’t working and that change is needed.

We know that people with disability have much lower labour force participation rates than people without. You are far more likely to be unemployed if you have a disability. You are far more likely to be poor if you have a disability. Major social reforms are required to reduce barriers to participation and to improve the lives of people with disability...

While we’ve achieved some important things in recent years, there is so much more work to do and in many ways, we’re only just beginning. The Productivity Commission’s inquiry is, of course, a significant undertaking. The issues being explored as part of the inquiry, including the consideration of a national disability insurance scheme, are things that have been spoken about for decades. We know that a major rethink is needed, that the current system is very complex. This is why the

A voice for the community

Senator Jan McLucas, above, and at the launch

of the National Disability Strategy.


government asked the Productivity Commission to properly investigate the options…

You have had much experience working with the disability and carers sector. What has been your proudest achievement in this area so far?

When the Council of Australian Governments (COAG) endorsed the National Disability Strategy on February 13 this year, I must say it was a very moving occasion – for many people with disability, their families and carers, and, indeed, for me.

This strategy has been a long time in the making. And, personally, it is something I have been working on for many years. In Opposition, I initiated a Senate inquiry into funding arrangements for people with disability. Developing a National Disability Strategy was one of the key recommendations to emerge. It became a key component of this government’s 2007 election commitment, and one we embraced in government.

After extensive consultation with thousands of people with disability, carers and disability service providers, and a lot of hard work by many people, the strategy was developed. Agreement from all governments throughout Australia was secured earlier this year...

The National Disability Strategy is much more than a document. It provides the framework for change. It’s about making sure government decisions in areas such as infrastructure, health services, transport, education, housing and employment take into account the various needs of people with disability. It’s about fundamentally changing our thinking so that the needs of people with disability are considered at all stages of policy development and delivery, rather than as a patch-up when issues arise following implementation...

My proudest achievements are also often moments that occur on an average day in a typical suburb - the moments we don’t read about in the newspaper. Like when a parent tells me they just heard their four-year-old child with autism say ‘mum’ or ‘dad’ for their first time after attending one the autism centres the government has established. Like when I attend a graduation ceremony for a young trainee in the public service with a disability, who has been offered a full-time job. These are moments that remind me why I entered politics, that inspire and motivate me, that make me proud.

Has there been any person you’ve met in the disability community, who has particularly touched you?

There are many people, from very different walks of life, that have made a strong impact on me. Some examples include that I met a young woman in about 2006, who attended a public hearing as part of the Senate Inquiry into the quality

and equity in aged care. Hearings were held across Australia, but it was an address by this young person in Tasmania that particularly struck a chord with me.

The young woman in her 20s, very articulate and with a radiant personality, lived in a residential aged care facility. Her family was unable to provide the care she needed and, while many in the room at the hearing assumed her biggest challenges were access, adequate treatment and therapies and so on, this young woman spoke about the one thing she grappled with most in life – the fact that her closest friends, who were well into their 80s and 90s, were dying. I often think of her words during that hearing and I’m sure it will stay with for a long time to come.

There is a family in my hometown of Cairns that has also had a major impact on me. Well over a decade ago in my electorate office in Cairns, I met a passionate, driven parent who wanted her son to have a better life. Her young son had Duchenne Muscular Dystrophy (DMD), a devastating degenerative muscle disease. DMD-affected boys are usually wheelchair-bound before the age of 12 and generally don’t survive beyond their early 20s. Like a dog with a bone, this parent fought for access to treatments for her son and to raise awareness among the community. Her unwavering dedication has been truly inspiring.

After hearing her story, I recognised the need for increased support for families like hers and helped drive the campaign among health officials and policy makers. I could not ignore this family all those years ago and I was so pleased in November last year to celebrate with them a significant milestone and a major step forward, the launch of the National Duchenne Muscular Dystrophy (DMD) Registry, enabling children with the disease to have increased access to lifesaving treatments through clinical trials. A registry a long time in the making...

Link read that, before politics, you left your teaching career behind to spend three months’ backpacking in Africa. Do you think it helped shape you?

Experiencing other cultures, lifestyles, cuisines and people really does open your eyes and broaden your horizons. Leaving a typical suburb in Australia and landing in an exotic and intriguing place, very unlike what I was used to and far from my comfort zone, was initially daunting.

But the three months I spent travelling throughout Africa proved to be an unforgettable experience that I have very fond memories of. Africa is a beautiful continent with some stunning sites to see. I thoroughly enjoyed trekking through many parts of Africa and loved the safari experience - I fell in love with the animals!


cover story | dance

Music & movementA desire to move to the rhythm is proving to be more than just fun for some. Carla Caruso reports.

Darkened silhouettes dart behind white sheets, moving to the sound of African drumming. The beat then changes and children, donning faux fluffy tails, emerge. Feet scuffle across the floor and smiles light up their faces – some are wearing face paint.

Next, they’re leaping up towards the “moon” in the style of the children’s book, The Wild Things, in which fearsome-looking monsters lurk (the Maurice Sendak tome being what’s inspiring the dance performance). Next, the young performers crawl across the floor like wriggly-worms, before tapping their feet amid a seated circle.

Sally Chance, the founding artistic director of Restless Dance Theatre – an Adelaide youth dance company, whose work is inspired by cultures of disability − had made a promise earlier in the night. “We haven’t rehearsed a moment of things, because your children are just too creative.” And the performance certainly didn’t disappoint, met with rapturous applause from the crowd of family and carers gathered.

It’s the final performance night of the first eight-week Leaps and Bounds project − a new partnership between Restless and Autism SA, targeting eight to 12 year olds.

The project was developed in recognition of the fact that many children with Autism Spectrum Disorder experience social isolation and exclusion from extracurricular programs such as sport, music and the arts. It was funded jointly by Arts SA and Parents Assisting Kids with Autism − a small, parent-led volunteer committee of Autism SA.

Following the program, Caroline Pascoe wrote to Restless to sing the praises of the involvement of her 10-year-old granddaughter Nicola, who has Asperger’s Syndrome, in the program. “[Nicola] doesn’t complain about it, but I feel she has difficulty at school being accepted into the group and does not seem to make friends as easily as you could expect for someone with her bright intelligence and personality. [But] she has found her sanctuary in Leaps and Bounds.” Adding: “It gives her a special place, where she is not judged, is never wrong or peculiar and is, above all, accepted for what she is.”

Nine-year-old participant Liam Moss also shared his view on taking part: “It’s been exciting and an adventure. It just gave us a chance to be ourselves.”

Dance has always been a natural human inclination, but, it seems, its effects can be even more far-reaching for some with a disability. This was recently highlighted by the BBC documentary, Autism, Disco and Me, which aired on Foxtel and centred on 10-year-old James Hobley from the UK. Two years ago, Hobley, who has autism, couldn’t read or write and was happier playing with his cats than talking to his family. But, at age eight, he discovered disco dancing and his life changed forever – within months, he was reading and writing and winning dance competitions.

Further delving into the issue, Link spoke to others instructing people with disabilities in dance and movement.

Feel the rhythm...


Top: Children are inspired by The Wild Things at a performance at Restless Dance Theatre. Bottom left: Britain’s James Hobley stars in the BBC documentary, Autism, Disco and Me. Bottom right: Nicola Bray, Mikayla Davey, Brooke Langdon and Liam Moss were participants in the unique dance project, Leaps and Bounds. Plus, more dance action at Restless.


cover story | dance

The yoga instructorYoga practitioner Karamdeep Singh from Sydney’s Radiant Awakening Kundalini Yoga Centre helps teach students with disabilities at the studio.

The Latin dance teacherJulie Di Camillo is the principal of Perth’s Danza Pasion studio, which holds classes for children with disabilities every Thursday. She’s pictured with student Janelle.

Why did you decide to involve children with disabilities in your classes? Well, it was

actually a suggestion from one of our regular students. She has a son with autism and thought it would really help him.

What do you think a child with a disability can gain from yoga? Kundalini yoga, in particular, helps balance the hemispheres of the brain, as well as working with the endocrine system, nervous system and glandular system, bringing everything into balance and the glands to excrete hormones in a proper balance. So it really just helps balance brain and body into harmony when it may be working a bit out of whack.

Why did you decide to hold classes for young people with disabilities

at your studio? In 2006, we raised funds for Telethon by organising [the event] Dancing with Telethon Stars. This motivated me to help young people with disabilities and so began my classes in this area. Six years on, we are still working with disability groups... These students bring so much joy to us! We call them our ‘angels’ class’. They think we give to them by instructing them and I’m sure we do, but they give back to us so much. They’re just amazing people!

What types of dance styles are they taught? We do mostly ballroom, Latin and just made-up fun dances to specific pieces of music. The style is whatever they can handle. Some of the dances are partner dances, but many are dances on their own. We might get the students to dance in a circle or in a line, following one another. We just do whatever they like – whatever’s fun!

What are the students like? Over the years, we’ve had students with a range of disabilities, from Down’s syndrome to autism. Most are in their early 20s. We usually have about 10 students per class. A lot of them have been here since day one. But we don’t mind new people coming along too.

What sort of changes have you seen in some of the students since taking up dancing? We have come so far with many of them, from what I’ve seen and from what their carers and parents have told me. There have been students with autism, who hadn’t previously liked any people getting close to them. With one of the students, nobody could get within two feet of him but then he slowly started letting us touch one of his fingers, then two fingers... Then, the other day, I held his whole hand! It made me cry. For me, that was a very special moment. Slowly, slowly, we break down the barriers, because they love what they’re doing and feel comfortable to get closer. Also the exercise too is so beneficial.

Does teaching children with disabilities require a little more patience and instruction? Actually, if you teach kids yoga already, some of the kids with disabilities may take less patience! Our student with autism, for example, is very intuitive, very compassionate, and just a shining spirit. The other kids are very respectful and there isn’t much emphasis put on the fact that some are different.

What types of changes might you see in participants with disabilities over time? After doing several of these classes, you will find the children − or anyone who practices this yoga − having less erratic behaviour, uplifted spirits, and a more balanced emotional pattern. They enjoy it so much it’s hard to get them to leave!


The dance therapistDr Heather Hill is a professional member of the Dance Therapy Association of Australia.

Is the idea of dance therapy a new concept? Dance has always been part of human expression and communication, but its application specifically in terms of Western therapy is more recent, dating from the ‘40s in the US.

How can dance therapy help a person with a disability? Dance therapy works with the whole person and meets the person, where he or she is at. It can address physical, emotional or psychological, and social needs and, as often as not, all three areas of need are relevant... In the field of disability, the preferred model is a social rather than medical model − and dance therapy can fit well into community settings…

We don’t try to have people fit the program, but rather fit the program to the participants. I should add that an important part of dance therapy is the aesthetic component − the fun, the pleasure, the connection to feelings.

What types of disabilities can respond well to dance therapy? All types of disabilities, including the most physically disabled. A teacher of mine said even if the person can only move an eyebrow, they can still dance! And I have found this to be true in my work.

What types of changes might you see in people undergoing dance therapy? There … are benefits such as helping participants be more aware of the space around them, of increasing focus and attention, growing in confidence, becoming more creative and less rigid.

At the moment, I am involved with a community dance program, which is a family support program. Rather than offering respite through giving parents time out from being with their child, we are encouraging the parents to stay and dance with their children. In this way, we are hoping to offer a positive experience that they can share together.

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opinion | wayneeckert

Laura was mentally ill at the time of her death. Initially diagnosed as suff ering bipolar disorder, she was re-diagnosed as suff ering a behavioural personality disorder.

She stopped taking the lithium that had been prescribed for her bipolar disorder. I met Laura’s parents at the inquest. Th ey blamed the psychiatrist,

who changed the diagnosis for her demise. He was not called to testify at the inquest because he had ‘lost’ Laura’s fi le.

Following her new diagnosis, Laura suff ered stigma and rejection by mental health services. My dictionary defi nes ‘stigma’ to mean a mark of disgrace and other defi nitions relate this disgrace to “something regarded as socially unacceptable”. In this report, I ask whether Laura Parker was the victim of stigma by the three governmental bodies that make up the criminal justice system in South Australia.

Th e policeUnder section 23 of the Mental Health Act (the legislation has been amended since Laura’s death), police offi cers who believed that people with a mental illness whose conduct has been as such to cause danger to themselves or to others could be apprehended and taken to a doctor or approved treatment centre.

Th e Deputy Coroner records that the police used this protective power to apprehend Laura Parker on a number of occasions from December 2007 to January 2008. She suff ered a number of epileptic seizures while in police custody.

Th e police believed Laura Parker to be a malingerer. Th e Deputy Coroner stated: “Irrespective of whether any of Ms. Parker’s behaviour generally could be identifi ed as attention-seeking, from those descriptions it would be impossible to say any or all of the apparent recent seizures had been feigned.”

Th is is signifi cant because an epileptic seizure led to Laura’s

This report tells the story of Laura Parker’s death after a long jail term as a remand prisoner at the Adelaide Women’s Prison. Her incarceration continued months of inferior treatment by the criminal justice system − the police, the courts and the correctional services department that manages the jails − all of whom received strong criticism from Anthony Schapel, the Deputy State Coroner, in his ndings at Laura Parker’s inquest in 2010. Wayne Eckert reports.

A victim of stigma?


death. He also noted that in February 2008, the police formed the view that the hospitals would no longer deal with Laura. Instead, she was charged with disorderly behaviour on February 26 when she chanted religious statements at the food court in the Noarlunga Centre. The decision by the police to resort to the criminal law instead of using their protective power stigmatised Laura Parker.

The Deputy Coroner criticised the police for not including her recent history of epileptic seizures in the documentation they gave to the staff at the Adelaide Women’s Prison when they delivered her there.

Christies Beach Magistrates CourtDisorderly behaviour is a minor offence that the police use to remove drunks from the streets. It normally attracts a small fine. The Deputy Coroner said that he could not understand why Laura Parker was kept in custody.

He said: “It would seem an extraordinary and inhumane response from an enlightened society such as ours that a person could be kept in custody for the next two to three weeks for a relatively minor matter such as this, even taking into account Ms. Parker’s apparent incorrigibility.” No doubt the police prosecution took a prominent role in ensuring that Laura was never released.

Laura attended the Magistrates Court on three occasions before she died. On the last occasion, the presiding magistrate ordered urgent psychiatric assessment for Laura. The Deputy Coroner noted that the assessment did not occur urgently because nobody took the steps to give the psychiatric review the priority it required.

Adelaide Women’s PrisonFollowing her remand by the Christies Beach Magistrates Court on three occasions for the trifling offence of disorderly behaviour, Laura was imprisoned at the Adelaide Women’s Prison (AWP) from February 26 to March 16, 2008 – the latter being the date on which she died.

In December 2007, a management plan had been developed by the Flinders Medical Centre to cover Laura’s attendances at the hospital’s Emergency Department. This document relied on the diagnosis that Laura did not suffer a serious mental disorder. It came into the hands of the Prison Health Service (PHS) at the AWP.

The Deputy Coroner found that this document was “manifestly inappropriate” for use by a correctional institution. The Deputy Coroner also found that the Corrections staff believed that “Ms. Parker’s erratic actions within the AWP were ‘behavioural’ in origin as opposed to being the manifestation of a mental illness.”

During her stay at the AWP, Laura was held in solitary confinement as a result of her belligerent behaviour. The Deputy Coroner found that the safeguards in the Correctional Services Act that related to Laura’s solitary confinement had been neglected so that the Minister had not been advised of Laura’s predicament.

The unit manager of the AWP said that he acted on the advice from the PHS that Laura’s presentation was behavioural, advice that the Deputy Coroner considered “inappropriate”. The Deputy Coroner branded the AWP management’s ignorance of Laura’s condition as “nothing short of astonishing”.

Why did Laura’s delusional behaviour, a hallmark symptom of serious mental illness, evoke disbelief? Her irrational behaviour appears to be like a B-grade horror movie. She claimed multiple rapes, a connection with ASIO and that she spent one night talking to God. Finally, she smeared food, faeces and urine on the walls and door of her cell. She repeatedly refused to leave her cell to take a shower.

Nevertheless, the PHS stuck to their view that her conduct was behavioural. The Deputy Coroner said: “The evidence of correctional officers and nurses, who came into contact with Ms. Parker in this period, very much suggests that Ms. Parker’s behaviour and frame of mind deteriorated to the point, where any reasonable person would have taken appropriate remedial action at the first available opportunity.”

Laura’s condition worsened towards the time of her death. She was deprived of sleep for 72 hours. The Deputy Coroner noted that a light was burning all the time in her cell to ensure her activities could be seen on CCTV. She refused her anticonvulsant medication for two days. Both of these factors increased the risk of an epileptic seizure.

Most of the staff who testified at the inquest said that they were unaware of her recent medical history of epileptic seizures in police custody because the police did not report it. The Deputy Coroner found that Laura’s condition could not be managed by CCTV observation alone.

Finally, a PHS staff member sought the opinion of a doctor who said that Laura’s behaviour was manic, a characteristic symptom of bipolar disorder. He ordered that she be transferred to and detained in the Royal Adelaide Hospital. An ambulance was called to transport her. Arrangements were made for her to be removed from her cell and cleaned up.

One of the staff decided to hose the cell down with a fire hose while Laura was still in it.

None of the correctional services staff were willing to enter Laura’s cell because it was in a squalid condition. One of the staff decided to hose the cell down with a fire hose while Laura was still in it. He did not obtain management approval to do this.

Shortly after, Laura suffered an epileptic seizure that led to a cardiac arrest. It took the correctional services staff 13 minutes to enter her cell after an alarm was sounded. It was standard procedure to don a bio-suit before entering a cell, but the Deputy Coroner found that this alone could not account for the delay. The evidence of the staff members at the inquest was inconsistent and contradictory.

The final witness at the inquest was Dr. Martin Robertson, who was called as an expert witness on epilepsy. His evidence technically absolved the correctional services and PHS staff of responsibility for Laura’s death, but it did not excuse their negligence in failing to carry out their duty of care for her.

In January 2011, there was a small storm of protest in the local newspaper after the president of the Law Society demanded that prisoners with mental health disabilities receive appropriate medical treatment while in jail. Laura Parker’s case is one example where this didn’t happen.

Each of the government bodies that together comprise the criminal justice system appears to have formed opinions about Laura, which led them to treat her differently to her counterparts without disabilities. This is enough to amount to stigmatisation.

Laura Parker did not deserve the treatment she received from the criminal justice system. While operational staff can be blamed for importing their prejudices from their social lives into their work, management can be equally blamed for not educating their staff.


A light was burning all the time in her cell to ensure her activities could be seen on CCTV.


advertorial | freedommotorsaustralia

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Accessible transportation freedom a reality!


opinion | kellyvincent

Th e latest unmet needs data from December 2010, published in March, indicates yet another rise in the number of people with disabilities waiting for accommodation.

Th is is most notable among those Disability SA [government] clients marked as Category One priority, meaning that they are at immediate risk of homelessness or causing harm to themselves or others.

Although, this is greatly disconcerting in itself, recent stories in the media have made it clear that the government must place equal importance on fi nding suitable homes for people with disabilities and monitoring what happens to those people once accommodation is found for them.

Most prominent among these stories has been that of the Strathmont Centre at Oakden in South Australia. Opened in 1971, the centre was at that time considered an A-grade institutional home for people with intellectual disability. However, as time has moved on, the attitude toward institutions has changed, and now they are largely viewed as inappropriate. Strathmont itself has also become physically rundown. As a result, the government announced the centre would close and each of its residents would be housed elsewhere.

An article in the Sunday Mail highlighted many of the defi ciencies of Strathmont, including some residents being locked in their bedrooms for hours without easy access to toilet facilities. Unfortunately, however, it would seem that this kind of injustice had been going on for some time before being brought to light in the media.

As appalling as this may be, what I personally found most alarming was that Jennifer Rankine, the State Minister for Disability, claimed she was unaware of the substandard care Strathmont residents were receiving.

Yes, a minister’s duties are many and onerous and this may mean that Ms Rankine is unable to personally visit the centre as often as she should like. But the fact that the Minister for Disability, whose job it is to oversee the provision of disability services and ensure that they are delivered in a timely and appropriate manner, was completely unaware of the unacceptable treatment of some of the most at-risk members of her constituency indicates that, as well as an immediate upgrade of the standard of care at the centre, and personalised, realistic plans for where each resident will be housed once they are moved out, we may also need an “extra set of eyes” monitoring the care of at-risk groups.

An extra set of eyes

Otherwise it is nothing more than a real-life version of the magic mirror in Snow White.

Dignity for Disability MLC Kelly Vincent advocates implementing a Community Visitors

Scheme for at-risk people with disabilities.


The Mental Health Act was recently changed so it now includes legislative backing for a Community Visitors Scheme, which will be implemented this June. Under the scheme, appointed visitors will visit group homes and facilities, where vulnerable people living with mental illness reside, to observe the person in this environment, ascertain if this person is receiving an acceptable standard of care, and report back to the Department.

In light of the obvious lack of similar monitoring in the disability sector and the atrocities this has led to, Dignity for Disability is committed to advocating for the implementation of a Community Visitors Scheme for at-risk people with disabilities other than mental health issues. I am currently in the throes of working with Parliamentary Counsel on drafting a bill to legislate for this, which I will introduce to the Parliament in the coming weeks.

I am, however, acutely aware that the Community Visitors Scheme under the Mental Health Act is not perfect. I, like others in the disability and mental health sectors, have grave concerns about the lack of objectivity visitors under this scheme may apply to their work if they are appointed by the same they are supposed to be scrutinising.

Objectivity is the lynchpin of any successful Community Visitors Scheme – otherwise it is nothing more than a real-

life version of the famous magic mirror in the story, Snow White, giving the Minister nothing but the answers she wants to hear. This is why I will be working hard on creating draft legislation for a scheme in the disability sector, which is highly neutral, independent and honest as well as being respectful of its visitors, treating them not as mere clients or case studies, but as members of ours who, without a little help, could “fall through the cracks” all too easily. With your feedback and support, we can help ensure that the Government can no longer turn a blind eye on people in our community such as the Strathmont residents. d4d.com.au

A snapshot of the Community Visitors SchemeThe scheme’s role is to protect and advocate for the interests of children, young people and adults in residential care, including those with disabilities. Visitors act as the “eyes and ears” of the Minister by monitoring issues in service delivery at a grass-roots level, according to Lawlink NSW.

‘Working for Successful Futures’

‘Working for Successful Futures’Barossa Enterprises (BE) provides opportunities for people with a disability who live in the Gawler, Barossa and Clare Valley regions of South Australia.

BE offers respite and crisis accommodation, in home support, on job training, Job Placement in open employment (Joblink) and supported employment.

BE’s WoodWerx division offers quality wine boxes, labelling and delabelling, wine decanting, pallet making, envelope packaging and firewood. All are for purchase by businesses and the public.

P: 08 8562 4855 E: [email protected]: www.barossaent.com.au

‘Working for Successful Futures’

Depression is very common in people who have experienced a head injury. The Monash Alfred Psychiatry Research Centre (MAPrc) at the Alfred Hospital is accepting volunteers into a clinical trial of an investigational, non-medication treatment for depression following head injury.

Participants must be between the ages of 18 and 70, have a diagnosis of Major Depression, be currently depressed and be at least 6 weeks post head injury.

Participants will receive daily outpatient treatment with a non-invasive magnetic device, Transcranial Magnetic Stimulation (TMS) over a number of weeks. Participation is completely confidential.

If you would like more information or are interested in participating please contact Susan, Sally, Nicci or Amy on (03) 9076 6595 [email protected] or see www.maprc.org.au

LOOKING FOR A NON-MEDICATION TREATMENT FOR DEPRESSION

FOLLOWING HEAD INJURY?


opinion | johnnymackay

As the world basks in the post-wedding glow of Prince William and Catherine Middleton’s

nuptials, civil celebrant Johnny Mackay ponders the minefield that marriage can

present for people with a disability. Illustration: Daniella Caruso

Ceremony, when facilitated in a respectful and meaningful way, can be transformational – literally.

All people deserve the right to openly express their feelings in this way. But while legal bindings are part of our culture, it is not the legality itself that holds the power of transformation, it is the aspects of traditional ritualistic practice.

Options like commitment ceremonies, hand-fasting rituals, friendship rites of recognition and soul-mate celebrations can all pertain to the ceremonial atmosphere and, when done well, include all the power, inclusion and transformational values inherent in a well-executed marriage ritual.

Yet, these options are rarely discussed in the face of legal implications and unfair judgement when it comes to people with a disability or illness.

There are two reasons, in my experience, why marginalised groups do not receive sufficient information to make quality decisions. One is that the options are unknown and two is that, if the options are known, the pathways to access them are not. What is of prime importance is that all of the options and information around ceremony possibilities are made available.

In addition, they must be delivered in a format that is understandable and meaningful from the point of view of the parties involved. Restricting people’s options, inadvertently or otherwise, by using an approach defined through the limitations of social stigma and oppressive perspectives, is unacceptable. “I am a person and I want clear options, so I can make my own choices, based on my own needs and wants.” Love, for all its subtleness and quiet perfection, will find a way if we let it.

Some time ago, I was privileged enough to be asked to conduct a ceremony for two wonderful people − each with some degree of intellectual disability. The organisation, which supported the couple through a combination of independent and supported-living arrangements, was excited at the proposal since the couple had lived together for eight years at the centre.

Unfortunately, in consultation with the immediate and extended families, it became obvious that not everyone was in support of such a legal arrangement. It seemed the desire for expression through a marriage ceremony would be ‘thwarted at the pass’.

But, after further debate and input from people courageous enough to think outside the square, it was asked of me if a commitment ceremony might hold the same value. Considering the essential components of a meaningful ceremony, it was an obvious ‘yes’. Explaining this to the couple, I was told by the bride: “As long as he puts a ring on


my fi nger and we’re standing there together in front of our friends and family, I’ll be happy.”

And so, a commitment ceremony was created by and with the couple. Because of the legal implications surrounding wedding ceremonies, however, there were things we did not do:

• We did not, at any time, refer to this as a marriage or wedding ceremony.

• No documents were sent to the Offi ce of Births, Deaths and Marriages.

• No name changes occurred afterwards. Reference, as necessary, was instead respectfully made to ‘the happy couple’.

Yet, for all intents and purposes? As with a wedding, we engaged in several meetings before the event and enjoyed a building of tension and excitement as the day grew closer.

As with a wedding, there was dress, suit and shoe shopping, fl ower approval and organisation, hair appointments and car hire. As with a wedding, the couple said their words, uttered their phrases, exchanged their rings and a certifi cate was signed, witnessed and presented, all captured through a camera lens.

As with a wedding, the ceremony began, unfolded and resolved using the power of live music and fi nishing with the traditional re-integration of celebratory feasts and toasts. And, as with a wedding, the couple sealed their agreement with a kiss, so that for the 20 or so people present on that day, there could be absolutely no mistake – this ceremony brought people together for a common purpose.

And it clearly stated one indisputable fact: “Here were two individuals, who loved each other and wanted to declare it to the world. Th at for all the ups and downs they knew would be part of their future, they were together and committed. It would always be that way in their lives and in their hearts, no matter what anyone else would say, think or do. Th ey were a

couple − and now, it was offi cial.”

Johnny Mackay is the author of Rebel Yell and Sonja’s Song and the Legend of a Th ousand Tears. He holds national accreditations in management, disability services, mental health, training and is currently undertaking a university degree. He is a registered civil celebrant and can be contacted via awen.moonfruit.com.


study | thesummerfoundation

An updateThe Summer Foundation has been engaged by Victoria’s Department of Human Services (DHS) to evaluate the quality of life outcomes for my future my choice participants.

This involves interviewing people who are receiving my future my choice supports and/or their families members or significant others. The interviews will explore how my future my choice supports have impacted on the person’s quality of life.

The evaluation aims to interview a total of 90 people to provide a broad range of experiences. So far 56 people have indicated their desire to participate in the evaluation, and the foundation is now hoping to engage a further 34 people before the end of August 2011.

The outcomes of interviews will be analysed by the Summer Foundation and a report on the findings will be provided to the Department of Human Services.

Who can participate?Anyone who currently receives my future my choice funded supports is invited to participate in the evaluation. This may include:

1. People who live in residential aged care (RAC) and receive supports through my future my choice to improve their quality of life.

2. People who have moved out of RAC into the community into either shared supported accommodation or other independent housing options.

3. People who have been diverted from entering RAC by receiving my future my choice supports.

Future outlookInterviewsThe interviews generally take about an hour and are conducted by an experienced health professional. Everyone’s opinions are valued and are confidential.

The Summer Foundation will organise interviews to best suit the person’s needs. For example, they can be flexible in timing, can organise communication assistance if required, or if the person fatigues, they can return at a later time. The location of the interview will be arranged to suit the person and/or family member and be scheduled for a convenient time and location.

Participants can nominate a family member to participate in all or part of the interview on their behalf, or they might like to have a support person assist them in the interview.

If a person is moving into a new my future my choice service, the foundation may ask to do a before and after move interview.

Emerging themesThirty interviews have been conducted to date. Of these, 60 per cent of the people interviewed were male. Fifty-three per cent of people were living in RAC, while 47 per cent were living elsewhere in the community. Forty-seven per cent of people had a neurological condition, 37 per cent an acquired brain injury, and 9 per cent, a physical disability.

Initial analysis has shown that the first 30 participants had higher levels of social participation than the group who had not received my future my choice supports. However, caution should be used in interpreting outcomes as the sample size at this stage is too small to draw any firm conclusions.

The Summer Foundation is evaluating the quality of life for my future my choice participants – young people in or at risk of entering residential aged care.


The following are a small selection of quotes collected during the interviews that highlight some changes in quality of life for people who received my future my choice supports…

“Right now, you know, I love it. I can play my music loudly and I can play my own music and I don’t have to listen to anything.” - A participant who has moved from RAC to the community.

“…His independence has increased phenomenally. The quality of his life is heaps better because he’s more relaxed. I think also that’s impacted on his health… not so much his physical health but his emotional health, because he’s so much more relaxed I think he’s happy.”

- A spouse of a participant who has moved from RAC to the community.

A snapshot of my future my choicemy future my choice aims to provide better living options for younger people in, or at risk of entry to, residential aged care. This will be achieved through the development of innovative support models that respond to complex clinical and health care needs, while also providing lifestyle and social opportunities that younger people can identify with.

Source: Victoria’s Department of Human Services

“My future my choice has given me the opportunity to communicate again with people. Before I communicated by nodding or grunting, so I feel as though I’ve come out the Stone Age or through the Dark Ages. It is fantastic that I can relay my thoughts and feelings onto my computer and magically a voice appears.”

- A participant, who has remained in RAC, but received a communication device.

Being involvedIf you would like to participate in the evaluation and share your experiences since receiving my future my choice supports, please contact Nadine Holgate or Di Winkler at the Summer Foundation on (03) 9894 7006 or email [email protected].


travel | brucemumford

Flights of fancy /This is the fifth in a series on accessible travelling by Bruce Mumford. This tale covers the second part of his family road trip to Victoria’s Great Ocean Road.

Above: Author Bruce Mumford carefully

‘trickles’ into the chopper.

Right: The boys walk beneath the cliffs at the

Twelve Apostles.

One of the highlights of our trip was a flight by helicopter over the Twelve Apostles. The helicopter left right from the Twelve Apostles Visitors Centre. The attendants were very helpful, but I had to take my time getting in because I didn’t want to grab onto and break something that might turn out to be important later…

Luckily, we just missed another squall before pushing on to Cape Otway and its lighthouse. You can stay here too, but strangely, I had never received replies to numerous enquiring emails.

Now I knew why. After negotiating the grassy bank to get to the only toilets − near the middle


of the reserve − which consisted of a couple of portaloos, set atop a raised platform, I realised that the lighthouse keeper’s cottage here would probably not have been very accessible!

But apart from the fantastic view up the coast (the boys told me it was even better from up the lighthouse, but there were just a few too many steps for me), the great thing at Cape Otway was the number of koalas to be seen. I was a bit miffed when everyone jumped out of the car to have a look at them, leaving me sitting inside straining to get a glimpse . I had resigned myself to missing out on koala-spotting until a few days later when staying at Wye River Caravan Park, a mother and baby entertained me all-day up a tree right outside our cabin !

That was the great thing about the Great Ocean Road – if you’ve got a disability, you don’t have to go far to get a great view.

Before leaving on this trip, I had consulted a health professional on how to prepare myself for the disaster I felt was inevitable – as my health and stability had declined so much since our last big trip. She thought for a while and then suggested taking along some Panadol.

When the inevitable happened though I didn’t expect it to be in a “fully accessible” cottage. Unfortunately the hobless shower did not drain properly, leaving a film of water over the bathroom floor. Over I went, slamming the back of my head against the wall and then down onto the slate floor (tip: I find cork or vinyl much better − and softer − in accessible bathrooms!)

On hearing my expletive-laden cries of disappointment, the family rushed in to help and Louise instructed me not to move, but to see if I could lift my legs one at a time. The right leg came up OK, but the left leg wouldn’t budge a centimetre. And then, I remembered that, because of the MS, I haven’t been able to bend it for about 10 years! So, at least, my spine was OK, but I could have done without the fierce headaches, acute back pain and cut toe!

I wasn’t real impressed with the lack of washing machine or dryer either. There were detailed instructions on how to get to a laundromat about 10 minutes away, however, for us that night it was just a bridge too far. But at least the Panadol came in handy!

Their help in this crisis reminded me just how vital the boys’ support has been this trip. We’re not just lucky they wanted to go with us. Quite simply, without them there would be no holiday at all. Although she is in most ways superhuman, even Louise couldn’t drive and get me in and out the car and push me everywhere and rescue me from disasters and get meals and wash and clean up and pack and…

So, unfortunately, our days of romantic getaways alone together are over. But we still do gaze deeply at each other, our eyes shining with meaning. Louise will murmur sweet nothings to me like: “How long do you think it will be before I have to put you in a nursing home?”

But if you’re not lucky enough to have a family or a strong helper along, you may need to think about an escorted accessible tour − and there are a few of these about (check out e-bility.com or australiaforall.com).

Our next stay at Wye River was great. Lots of wonderful coastal and forest walks for the family and a cabin that was quiet and scenic for me.

I spent all of one day just sitting on the verandah looking at the wildlife. Although, there were no specific accessible cabins, the manageress was quite receptive to ideas for setting one up, so hopefully there will be a fully accessible cabin there soon.

Our time on the Great Ocean Road at an end, we headed back homewards via Lancefield in central Victoria. But, on the way, we looked in at nearby Hanging Rock.

The track up the rock is sealed and wheelchair-accessible for about half the distance, although it is quite steep. I stayed down at the visitors centre as the thunder suggested imminent inclemency. Sure enough, just as the intrepid trekkers reached the top, lightening, wind and rain in buckets forced them to flee back down, drenched and gasping. But, Ashley was missing…

Somehow, he had got separated and lost. If only he’d watched the movie right through to the end, he might have been more careful! Luckiy, he eventually turned up. Getting me back in the car in the pouring rain was a bit of a challenge, but at least we were all together again.

Lancefield is a bit of a hidden treasure. Only about 15 minutes from Hanging Rock, it is a charming old rural town, with great dining, wineries, old buildings, antiques and a very good bookshop.

The Lancefield Guest House was just wonderful and the managers, Peter and Kate Chiller, were most helpful. Even though it was of older design, the accessible room was spacious (with 15-foot ceilings like the rest of the guesthouse!) and the accessible bathroom was practical and effective.

On hearing my expletive-laden cries, the family rushed in.


Only 50 minutes from Melbourne, Lancefield would make a

very inexpensive and central base for exploring. It was a bit like jumping back in time – the cook even left a nice cake for our morning tea!

We got back home two weeks after we left and had just beaten the floods, locust plagues and storms. I was pretty exhausted and relieved to be home, but wouldn’t have missed our trip for the world.

When you have a disability and are declining, time can seem to fly a lot faster than it should. Even though it’s difficult and takes us into unknown waters, I think it’s important to do things like this, even if you’re able-bodied. As Mel Brooks said: “You’re dead a long time”.

And, I learned quite a few things from our trip, like:

• Our trip’s tribulations showed how closely our family supports each other under pressure. But, be aware the reverse can also operate if there are already strains!

• It’s really important to check all essential equipment before leaving in enough time to get it repaired, if necessary

• For places to stay, we found caravan park cabins were roomier, had better views, were often more accessible and were nearly always much cheaper than other types of accommodation.

• Try to be flexible and make clear to accommodation managers the extent of your disability. When booking places, be specific as to your needs and don’t be afraid to ask for help.

• Be aware of your limitations and the likelihood of being exhausted. Don’t try to do too much in one day!

• If travelling with able-bodied companions, try to go to and stay at places that allow you to enjoy the views, while they go off enjoying more active things.

• The idea of a holiday is to have fun, so try not to stress too much and enjoy the moment. You may never pass this way again!

Contacts:Tourism Victoria visitgreatoceanroad.org.au, ph 1300 689 297

Wagga’s Pavilion Motel pavilionmotorinn.com.au, ph (02) 6921 6411

Grampians Stone Cottage grampianspioneercottages.com.au, ph (03) 5356 4402

Flagstaff Hill, Warnambool flagstaffhill.com, ph (03) 5559 4600

Port Campbell Holiday Park pchp.com.au, ph (03) 5598 6492

12 Apostles Helicopters 12apostleshelicopters.com.au, ph (03) 5598 8283

BIG4 Wye River Caravan Park wyerivervalleypark.com.au, ph1800 890 241

Lancefield Guest House lancefieldguesthouse.com.au, ph 0417 121 997

And. for my rambling blog done during the trip: http://bruce-rollingthegreatoceanroad.blogspot.com/2010/11/burrawang-to-grampians.html

Our days of romantic getaways alone

together are over.

travel | brucemumford


opinion | robbiwilliams

Knowledge is a wonderful thing. Knowledge helps us make sense of the world we live in and knowledge helps us shape our contribution to that world. Knowledge is so important that the Universal Declaration of Human Rights includes the right to an education.

The importance of a good education is clear. For example, in 2006, the Australian Bureau of Statistics conducted a survey of literacy and life skills. The bureau found a strong link

between education, literacy and employment.

An education is also about other skills and knowledge helpful for people to take up their place in the world. So, it is easy to understand why education is a right for all children, including children living with disability who are at greater risk of living a life less fulfilled because of how other people view their situation.

The Australian Government established the Disability Standards for Education in 2005 and is now reviewing them. The standards describe how students living with disability should be able to access education on the same basis as non-disabled students. They refer to a number of areas, such as reasonable adjustments, enrolments, participation, curriculum development and delivery, student support services, and dealing with harassment.M

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A big standard

Based on the conversations my agency has with families, especially through our parents’ forum, there is much still to be done.

There appears to be many young Australians living with disability who are not accessing education on the same basis as non-disabled students. Otherwise, surely every primary and secondary school in the land would have a school roll that includes students living with significant disability.

There is a range of views about the relative merits of mainstream and special education. I won’t debate that here. However, I think it fair to say that every non-disabled student has the option to attend the local publicly-funded school closest to their neighbourhood.

So, perhaps there should be only one main disability standard in education.Let’s call it the Big Standard: Every child living with disability can get a successful education at their local neighbourhood school.

This does not mean the other standards are unimportant. It simply means they are there to support the Big Standard. They may even work better as a result.

For example, one of the current standards is called “reasonable adjustment”, based on the expectation that a school will make reasonable adjustments, so that a student living with disability can attend. However, the wording of this standard is not helpful because who decides what “reasonable” means?

The government is currently reviewing its Disability Standards for Education, which describe how students with disabilities should be able to access education on the same basis as non-disabled students. Julia Farr Group chief executive officer Robbi Willams addresses what needs to be done now.


Th ere may be many local schools around Australia who say they are supportive of having a particular student living with disability at the school, but don’t enrol the student because the adjustments are not viewed as reasonable, as in, expensive or diffi cult. When this happens, the child’s right to an education is placed in the context of aff ordability. And I’m not sure this is what the United Nations had in mind for their Universal Declaration of Human Rights or the more recent Convention on the Rights of Persons with Disabilities.

If Australia commits to the Big Standard, we can replace “reasonable adjustment” with “necessary adjustment”. Th is means a school could be held accountable for making the necessary adjustments, so a local child living with disability can get a successful education there.

Th e Big Standard would also bring a fresh perspective to the professional development of teachers, who would need to be properly supported to grow their capacity to deliver a meaningful learning experience to every student in their class. Teachers have such an important role to play in the lives of Australian kids, so it is important we make this investment.

I heard a fi ne story a few months back from a parent of a son with severe and multiple disabilities. When his son was of

school age, he attended his local neighbourhood school and was in classes alongside non-disabled peers.

Th is student was welcomed into the life of the class because, as the teacher said himself, having the student there made that class a better place. Th is meant this man’s son was a true member of the class and became well-known to his peers. I fi nd it easy to imagine this is paying dividends in this young man’s adult life, because he is more likely to be known to − and valued by − people in his local community because they grew up together.

In this way, this student also contributed to the education of his non-disabled peers. In the words of the parent, his son was a teacher. As a result of his son’s presence in mainstream education, his non-disabled peers grew into their adult lives with the expectation that people, living with severe disability, are present and active members of our community.

Such knowledge can make a world of diff erence to the opportunities that then become available to the person with disability. Knowledge is a wonderful thing.

SA’s Julia Farr organisation is a not-for-profi t, non-government organisation. Th rough research and dialogue, the association develops policy and practice in support of people living with disability getting a fair go at everything that life has to off er.

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advertorial | bedford

Front-DamienBraun(BedfordHospitality),AngieHendrikse(BedfordHospitality).Back-JulieCampbell(ManagerFunctionCentre-EnterpriseHouse),DerekBond(Manager–BedfordHospitality),JoeScordo(BusinessSA)

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entertainment | reviews&more

COMEDY

WEB

Small worldShort-statured Melbourne comic Imaan Hadchiti, 21, took audiences on a hilarious ride during his show, A Little Perspective, at the Adelaide Fringe and Melbourne International Comedy Festival. He’s also been seen on the NRL’s Footy Show and SBS cult TV series Wilfred. Carla Caruso spoke to him.

What led you to performing comedy? I’ve always been a smart arse and doing comedy you get paid to be a smart arse. [Winning Triple J’s Class Clown national stand-up comedy contest at 15] was a good start. When I was young, I had no idea what I wanted to do, so I just signed up for it and kind of told my school that it was for work experience. And there we have it − it’s actually become my career. I was lucky!

Are there any other comedians with disabilities who inspire you? I met Francesca Martinez [a British comic, with cerebral palsy] in Adelaide and she’s an amazing, lovely girl. She does the same sort of thing that I do, but she’s been doing it for longer. Also Steady Eddy. I look to him as an example of how not to go too far with [the disability jokes]. He’s a great comedian, but you can’t limit yourself to just those types of jokes. He’s a good example of a comedian with diff erence. He has things to talk about besides being diff erent, because that can get a bit a stale. You can’t call yourself a comedian just because you’re diff erent.

Your sister, Rima, was on Big Brother. Why did you both decide to pursue showbiz? Performance is in the family. My dad, Alex, is a one-man band. He’s a muso and he’s travelled all through Europe doing restaurant music and stuff . Th e reason me and my sister do it is that it’s a good job for us − less work and more pay! And I guess we’re just trying to normalise [our condition]. Me and my sister, Rima [28], are the only ones, who have this type of shortness. We’re really quite short. It’s actually called the Rima’s syndrome after her, because they don’t know what pattern it has, such as if it skips a generation. She just had a child and he looks to be a full-sized, healthy human [though].

It’s almost like therapy, because I can vent in front of an audience.

healthshare.com.au

Healthshare is the fi rst social health networking site of its kind for adults, facing various health and life challenges, to launch in Oz.

While there are thousands of comprehensive resources available to people wanting to research their symptoms, conditions and possible treatments, getting better is also about harnessing the support and experience of others going through the same challenge.

Unlike existing social networking sites like MySpace and Facebook, Healthshare off ers more than 500 Australian support communities, focusing on medical and life challenges like cancer, weight loss, depression, parenting and diabetes. Members can connect with communities and other members facing similar challenges, share advice about

treatment options, doctor recommendations and write in their wellness journals.

Member Katrina Clark, pictured, who has a child with Rett syndrome and is a board member of Carers NSW, says: “Healthshare has the potential to provide Australia’s 2.6 million unpaid family carers with an online tool for connecting with each other, collaborating on treatments and staying up-to-date on activities and research from the associations they follow.”

Healthshare also links to more than 1000 not-for-profi t health organisations, such as Asthma NSW and Scoliosis Australia. It’s a free service for members.


BOOKS DVD

Autism by Polly and Jonathon Tommey (Little, Brown)

Jonathan and Polly Tommey’s eldest son, Billy, was diagnosed with severe autism at the age of two. Today, Billy is a high-functioning teenager, thanks to the determination of his parents to discover as much as possible about autism, its causes and potential treatments. Th ey show through their own experience how it is possible to improve the quality of life for children with autism. In his quest to help his son, Jonathan

trained as a nutritional therapist and now supports many individuals with autism spectrum disorders at his clinic.

Be Diff erent by John Elder Robison (Bantam Australia)

Th e author of the New York Times bestselling Look Me in the Eye returns, with endearing stories and actionable advice that will help Aspergians, and even ordinary geeks, embrace being diff erent and work on the things that hold them back in life. With his usual honesty, dry wit, and unapologetic eccentricity, John Robison argues that Asperger’s is about diff erence, not just disability.

People Like You (Deep Hill Fine Art Media)

People Like You is a collection of 11 true stories about everyday people who have overcome adversity to achieve. It includes the story of NSW Stroke Recovery Association president Robyn Artlett, who had a stroke at age 29. Not only did she raise her three children on her own, but

she re-learned how to do everything using just her left hand (she was previously right-handed), read and speak. Another featured is young woman Louisiana, who is almost blind. She cherishes her independence and has travelled extensively overseas on her own. Each story outlines each person’s history and achievements and fi nishes with positive advice for others. deephill.com.au

GOSS

• As part of Mental Health Week, a poetry competition is being jointly run by the SA Writers’ Centre and the Mental Health Coalition. Entries close September 9. For more info, head to mhcsa.net/?catID=54.

• Every Australian Counts − a campaign for the introduction of a National Disability Insurance Scheme − ran a competition, selecting eight social media champions to attend the National Disability and Carer Congress in Melbourne in May and report on the event via live reports and updates. Among the winners was 21-year-old Victorian Madeleine Sobb, who has a bone growth disorder and uses a wheelchair. Check out her YouTube channel, youtube.com/tinymads.

Managing Challenging Behaviour

Th is DVD from the Educational and Behavioural Consultancy provides a variety of options to prevent or reduce the occurrence of challenging behaviour in individuals. It also discusses how to be proactive in your approach to this instead of reactive, and how

to empower the individual to be more responsible for their own behaviour. Th e techniques used can be transferred to many situations, involving both children and adults exhibiting challenging behaviour. educonsult.biz

EVENT SNAPS

Th e Muscular Dystrophy Foundation of Australia unveiled celebrity chef Guy Grossi, left, and TV personality Luke Jacobz as their offi cial national ambassadors at a special event in Sydney in May. Joss Davies, 6, was among the crowd.


interview | stellayoung

Ramping upStella Young is the editor of Ramp Up, the ABC’s new website dedicated to everything about disability. Oh, and she’s also a stand-up comedian and fab knitter!

Tell us about your working life before joining the ABC’s Ramp Up.

My first real job after university was working for Arts Access Victoria [a disability arts organisation] as their communications coordinator. I did a whole variety of stuff in that job, but one of the most enjoyable bits was writing their e-newsletter... I included an “odd spot” in every edition as a place for funny things going on in disability around the world…

I worked at Arts Access for about three years and then decided I wanted a break from the disability sector. One of my many backgrounds is in teaching, so I applied for a position working in Public Programs at Melbourne Museum. Public Programs people are basically the ones who make sure the museum isn’t just a big building full of stuff − that there are great activities going on as well. Basically, the gist of my job was developing and delivering weekend and school holiday programs, as well as running sessions for education groups from kindergarten [age] to Year 12.

What drew you back to working in the disability sector?

My work at the museum was amazing. I got to learn weird and wonderful things (did you know that crickets’ ears are in their knees?), and meet awesome kids and families every day. While I was there, I still did a lot of disability advocacy in my personal life, and a lot of my stand-up comedy is about disability, so it seemed a return was always inevitable. I think the fact that this particular opportunity was so fantastic was what won me over.

Describe Ramp Up in a nutshell.

It’s an online space for news, opinion and discussion about disability. You can expect humour as well as the serious stuff!

What’s a typical workday like for you?

I update the site each morning, with news content from across the ABC. Most days I also spend quite a bit of time editing and uploading an opinion piece... A lot of my day is spent looking for disability news not just to publish on the website, but to “tweet”. The Ramp Up Twitter feed is a great way to stay up-to-date with what’s going on. Like most people in this day and age, I also get stacks of emails from really interesting people. Occasionally, I do radio interviews about Ramp Up or about whatever is going on in the disability space.

What do you consider the most pressing issues for the disability sector right now?

Establishing a government commitment to a National Disability Insurance Scheme. It’s ridiculous that we still live in a country where people are so inadequately supported. We need to give people what they need to be who they are − it’s that simple.

What are your private passions outside of work?

It’s pretty nerdy, but I’m a really obsessive knitter. Whenever I can get away with it, I love spending entire weekends doing not much else apart from knitting. Often I knit with other knitter friends – there’s nothing better than a nice long “crafternoon”!

Visit ABC Ramp Up at abc.net.au/rampup/.

Being heardSofya Gollan is a director, writer and actress and is also deaf. In April, she helped lead a two-day workshop, DELVE, organised by the Disability and Arts Transition Team, which covered writing for the screen, new media, and discussions of art and disability.

Do you think there is a good representation of disability in fi lms today?Most work that has a character with a disability or centres around disability issues tend to be made by people who are outside the experience or are observers, so as such it tends to be third-hand. So it’s not surprising that there’s a lot of misrepresentation or clichéd ideas of what it means to be disabled fl oating around in various programs. Especially some of the more popular soapies... In the last decade, it’s been great to see people who have direct experience either as a carer, family member or a person with a disability making their own stories and I fi nd them much more immediate and powerful, and I can see that becoming a normal state of aff airs...

What was it like working with actor Joel Edgerton in your short fi lm, shown at the workshop? He’s lovely to work with! I cast him in the short fi lm, Not the Usual Victim, as I heard about him through a friend. He’d just graduated from the theatre school and was keen to do as much work as he could. Th is was a long time ago, well before he was famous, but even then he was very professional and a lot of fun to work with. He’s as gorgeous in real-life as he appears to be!

What’s been the most glam thing you’ve got to do in the fi lm world? Mmmm... I haven’t had the chance to play glamorous roles (since deaf roles are not glamorous!) and writing and directing isn’t glamorous at all. It involves very early starts in the morning and working to late at night – it’s an arduous, long process. And with writing, it can take years before a project makes it to the big screen. I think perhaps the most glam thing that’s happened so far was when we were nominated for three AFI Awards for Preservation [a colonial Gothic love triangle, starring Jacqueline McKenzie, which Gollan wrote and directed]. Walking down the red carpet in our nice frocks and wobbly high heels was pretty exciting.

What’s it like presenting on Play School, using Auslan?I love working on Play School. It’s always a great, fun experience... It’s tricky using signing on the show because I’m often doing something like crafting a few bits of cardboard to make rabbit ears or something and having to talk at the same time. So signing with my hands full is always a challenge... [Still] I’m very aware that I’m one of the very few positive, regular representations of someone with a disability on a TV show that gets shown nationally. So I take my role in Play School very seriously, while trying to be very fun and light for the kids and show itself!


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breakthroughs

Friendly robot helps children with autismMeet Kaspar, a human-looking, child-sized robot who can smile, frown, laugh, blink and wave his arms. He’s also helping to teach children with autism about emotions and physical contact.

About 300 children in Britain with autism – a disorder that aff ects the development of social interaction and communication – have played with a Kaspar robot in the name of scientifi c research. Th e robot model was built by the Adaptive Systems Research Group of the UK’s University of Hertfordshire, costing about $2000, according to the Associated Press.

Children, with autism ranging from mild to severe, are made to play with the robot for up to 10 minutes alongside a scientist, who manipulates it with a remote control. Th ere are several version of the Kaspar robot, including one advanced enough to play Nintendo Wii, and the latest, covered in silicone patches, feeling like skin, helping children to become more comfy with touching people.

While still in the experimental stage, Kaspar is the most advanced robot of its kind in the fi eld and researchers hope it could be mass-produced one day for a few hundred dollars.

Australian design awards reveal a new generation of ingenuity

Th e search for Australia’s most ingenious young designers has been met with 93 industrial design and engineering graduates submitting their product innovations in the 2011 Australian Design Award-James Dyson Award.

Included in the student category of the Australian International Design

Awards have been some great innovations to support people with disabilities or disorders. Th is includes the Qettle, pictured, a revolutionary kettle design for people with limited wrist or arm movement. It relieves the pressure on the wrist muscles by placing the centre of mass of the apparatus at the point that the user holds and rotates it, resulting in a very smooth and easy pouring motion. Another innovative entry is the G-Navi, a system based on existing GPS technologies, targeted at increasing mobility among the blind community. Th e intelligent harness, controlled by GPS and a user headset, instructs a guide dog via a collar on which moves to make.

Also submitted has been a universally-designed refrigerator, which helps wheelchair users to see and reach all parts of

the refrigerator. Th e concept brings the inside ‘out’ so that all compartments are positioned closer to the user’s body.

Th e winners will be announced at the Australian International Design Awards event in Melbourne on July 22. student.designawards.com.au

Green tea may prevent adult incontinence

A Curtin University researcher has found drinking green tea may help alleviate urinary incontinence in middle-aged and older women.

Professor Andy Lee, from the WA’s Curtin Health Innovation Research Institute, collaborated with a Japanese research team to examine the eff ects of green tea consumption in a cohort of Japanese women aged between 40 and 75.

While urinary incontinence was a problem for 28 per cent of participants, the results showed that those who drank four or more cups of green tea daily were signifi cantly less likely to suff er from the condition.

“Th e diff erence between green tea and black tea is that the former is a non-fermented product,” Professor Lee said. “Both teas are produced from the leaves of Camelia sinensis, but green tea has undergone far less oxidation during processing and it has far less caff eine.” Th e study was published in the journal, Neurourology and Urodynamics.

opinion | petercoulter

The musings of Peter CoulterConcentrateAs a kid, I liked to let my mind wander off on all manner of tangents (daydreams) and I was forever happy, if not productive.

Th ere was often not a great amount of work done at the end of the study period. However, some focused, stuff ed shirts at Harvard University have decided that if you allow your mind to wander you could be unhappy.

According to a report in the Scientifi c American Magazine, the researchers had more than 2000 study participants use an iPhone application that randomly asked them to report their current activity and state of mind. Th e more people reported being distracted, the lower they reported their mood.

Of the tasks engaged during the study, many of the subjects admitted to

Peter Coulter ponders everything from daydreams to grumbling stomachs.

wandering minds during all but one task: sex!

Food timeIt has been proven that a lack of sleep for a prolonged period induces similar conditions to the eff ects of .08 alcohol intoxication. Further to this, it has now been discovered that the lack of rest and food will do the same thing.

Apparently, if you should fi nd yourself in court for any reason, try and make sure that your judge has just had his dinner or it is likely that he will simply hand down a fi nding based on nothing more than the sound of his grumbling stomach. Th is is in all likelihood to be simply “guilty, next case” or “held over”.

Th e reason is that the tired brain is not inclined to do any thinking or hard work and the simplest course of action is followed.

As reported in the Scientifi c American, researchers from New York’s Columbia

Business School analysed 1112 parole hearings for inmates of four Israeli prisons, made by eight judges over a 10-month period, including looking at their meal breaks. Th e fi ndings? When they need a break, decision-makers gravitate towards the easy option.

Brain powerWhen we see an apparently sane person launching into a mindless series of babbles, we tend to consider them to be either mad or aff ected. “Th ey have lost control and their brains are not all there,” we think.

But this is not the case and now there is evidence to prove it, according to the Scientifi c American. Th e eff ort of concentration to control the ticks and involuntary behaviours associated with Tourette’s syndrome has been shown in fMRI scans to aff ect elevated activity in the corpus callosum (a wide, fl at bundle of neural fi bres in the brain). Th is hints at the possibility that there is more cognitive activity occurring in the Tourette brain than previously thought.


June 2011 — Vol 20/2 linkmagazine 1

what’s on

SA Nursing and Health Expo5 June 2011Adelaide Convention Centrewww.rcna.org.au/development/sa_expo

Charlie’s Day 201110 June 2011To aid to breed, raise and train RSB Guide Dog pupRundle Mall, Adelaide SAContact: 08 8223 6222 or [email protected]

Australia’s Disability Employment Services Conference 201128-30 June 2011Sofitel Brisbane CentralEnquires to Catherine [email protected] or 03 8676 0353

Special Education Expo11–14 July 2011Education Development Centre, Hindmarsh, SAwww.decs.sa.gov.au/speced/pages/specialneeds/specedexpo/

National Cerebral Palsy Awareness Week1-7 August 2011www.tccp.com.au/content.php?page=432

South Australia’s Disability & Ageing Expo–Adelaide12 August 2011Adelaide Event & Exhibition Centre, Wayville www.aeec.com.au

The Sun Herald City 2 Surf 201114 August 2011Race commences from Sydney CBDwww.city2surf.com.au

NDS Employment Forum 20115-6 September 2011Hilton, SydneyEnquire Julie, [email protected],au or 02 9256 3115

Asia Pacific Autism Conference 20118-10 September 2011Burswood Resort, Perthwww.apac11.org

Autism Advisory & Support Service - Disability Expo 201116–17 September 2011Comfort Inn Hunts Liverpool, Corner of York Street and Hume Highway, Liverpool www.nds.org.au/events/1300937100

Sunday Mail City to Bay18 September 2011Race commences from Adelaide City to Glenelg Baywww.city-bay.org.au

Dark to Light Walk 201113 October 2011Starts from 230 Pirie Street, Adelaide SARegister by calling 08 8223 6222

South Australia’s Disability & Ageing Expo– The Iron Triangle – (Pt Pirie, Pt Augusta, Whyalla) 14 October 2011Whyalla Health & Leisure Centre, 5 Racecourse Rd, Whyalla Norrie [email protected] or 08 8236 0555

The 46th Annual Australasian Society for Intellectual Disability (ASID)9-11 November 2011Stamford Grand Hotel, Glenelg, South Australiawww.assid.org.au

connect! 8th annual disability arts party30 November 2011Venue TBA, Adelaidewww.nostringsattached.org.au/disability-arts-events.html

International Day of People with Disability3 December 2011Check for events near youFor more information: www.idpwd.com.au

Weekly Class for People with Disabilities – Sydney CityAccessible Arts - Wharf 4, Hickson RdParking available and accessible via public transportSaturdays 10am$150 for 10 classes (valid for 3 months) or $18 per class (drop-in rate)Teachers: Kirsty Fromholtz, Yumi [email protected]

Disabled WinterSport AustraliaPrograms designed to introduce people with disability to the mountain environment and skiing and/or snowboarding

NSW: for dates, contact Ph: 02 6450 0227 or M: 0422 651 279 email: [email protected]

VIC: for dates, contact Ph: 02 6450 0227 or M: 0422 651 279 email: [email protected]

Thursday Program for People with DisabilitiesEvery Thursday 12.30pmCarlton Neighbourhood learing centreAssist with preparation, share a meal and conversationCost: $4 per weekContact 03 9347 2739 or [email protected]


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