TIM FERGUSON IS BACK ONSTAGE AFTER MS DIAGNOSISlinkonline.com.au/assets/attachments/blog/26/link-20_1... · 2013-03-25 · Matt Elder, Waterfall Gully, SA Without due care My webpage

April 2011 | Volume 20 Issue 1

SPECIAL ARTS ISSUE, FROM TV TO THEATRE & FILM!

CANE & ABLE: TIM FERGUSON IS BACK ONSTAGE AFTER MS DIAGNOSIS

COMEBACK SWIM KING GEOFF HUEGILL’S CHARITY WORK

YOUNG POLLIE KELLY VINCENT jOINS US AS A COLUMNIST

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General and News DeadlinesLink is issued fi ve times a year: April, June, August, October and December. All material needs to be sent to Link six weeks before each issue is released.

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Cover Story

20 Tim Ferguson, of Don’t Forget Your Toothbrush fame, is returning to the stage after being diagnosed with Multiple Sclerosis, as Anthea Skinner reports.

Supporter

20

Cover: Melbourne comedian Tim Ferguson. Photo: Helen Missen.Some images throughout the issue are courtesy of stock.xchng.

Photo: Kelly Lefever

April 2011 — Vol 20/1 linkmagazine 3

4 Ed’s letter and event snaps

5 Letters

6 Link news bites

8 Senior news and new products

9 Art news, including mouth painter Urania

Michealidas going for gold

10 Screenwriter Laura Greaves lists her favourite fi lms

focusing on disability

11 Interview with British performer Mat Fraser – one

half of Th e Freak and the Showgirl

13 Famous people who haven’t let their disabilities get in

the way of their success

14 Sports news, from a MS charity bike ride to

scholarships for Paralympians

15 A Q&A with comeback swim king Geoff Huegill, a MS

Mega Swim ambassador

16 A tasty pumpkin and spinach pasta bake recipe,

thanks to San Remo

18 Keen horse rider Danyele T. Foster’s passion for the

Riding for the Disabled Association

23 Tracie Sammut’s performance workshops with

Accessible Arts NSW

24 Accessible travel with Bruce Mumford

28 Alyssa Gill takes a peek inside the Access All Areas

Film Festival

29 National Disablity Strategy launch

30 Young MLC Kelly Vincent on life in politics

32 Living with epilepsy

34 Ken Baker looks at the Productivity Commission’s

draft report into disability care and support

36 Unique job − an internal mail delivery courier for

Taronga Zoo

38 Johnny Mackay believes training and activity

programs for adults with disabilities and mental

illnesses need to be more expansive

40 Entertainment reviews and goss

43 A chat with drumming sensation Andrew Hewitt,

who has cerebral palsy

45 Breakthroughs

46 Peter Coulter on his concerns about synthetic scents

47 What’s on

48 Subscribe to Link

20

11 16

24

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4 linkonline.com.au April 2011 — Vol 20/1

As we have been putting this issue to “bed”, Adelaide – where Link is produced – has been abuzz with artsy-type goings-on.

Th e Adelaide Fringe, held in February and March, brings performers from around the world to our fair city in the areas of cabaret, circus, comedy, dance, music and more!

And, it was good to see disability as part of the mix. Included among the acts were Francesca Martinez, a British stand-up comic, who has cerebral palsy and describes herself as “wobbly”, and loved-up duo Mat Fraser and Julie Atlas Muz behind Th e Freak and the Showgirl,

celebrating showgirls, disability and nudity. (Read our chat with Fraser on page 11.)

We’ve decided to keep the performance-type vibe bubbling on, with a special arts focus this issue – including a chat with Tim Ferguson, of Don’t Forget Your Toothbrush fame, who’s returning to the stage after being diagnosed with MS.

Th ere’s also a heap of fi lm coverage this issue. (By the by, has anyone seen the Hollywood fl ick, Love and Other Drugs? It stars Anne Hathaway, whose character has Parkinson’s disease, and Jake Gyllenhaal – I absolutely loved it!)

Aptly, young Adelaide politician Kelly Vincent, who’s a playwright and performer in her spare time, has also come on-board as a Link columnist.

Want to tell us your thoughts about this issue or anything else? Befriend our mag’s page on Facebook. Enjoy!

Winning picTh is snapshot by Ben Macmahon was the People’s Choice Winner of the 2010 Photo Bank Awards – an initiative of Our Community and Australia Post. It features the Tutti Choir at the World Youth Day concert. SA’s Tutti Ensemble off ers opportunities to people with and without disabilities to become involved in visual, performing and digital arts through its arts program and to perform in a range of concerts and music-theatre events through its socially-inclusive choral program.

Carla Caruso, Link editor

Send you event snaps to [email protected]

from the editor

Event snapsBarkuma Inc celebrated its School to Work Transition Program graduation at the Adelaide Convention Centre. Th e program helps students with disabilities to progress from school to the workforce.

From top to bottom: Rhea Legrand and SA Education Minister Jay Weatherill. Ferdinand Ngendamayo, Lizzie Harding, Liam Collins and Dafroza Tumaini. Dusty Boxall, Jessica Breen and Lizzie Harding.


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

OK, it may have been to help rather than hinder, but I only learned of what was said 15 years after.

I now walk, but can’t run, and live an independent lifestyle with small but surmountable difficulty. Life is now a challenge, but not impossible.

Matt Elder, Waterfall Gully, SA

Without due careMy webpage about my husband Don’s dreadful suffering and consequent death in May 2007 at the hands of a major hospital in Australia is up-and-running.

As my testament was self-published [Without Due Care – An Australian Hospital Tragedy]− needs must − I am relying on the goodwill of those I have contact with to ensure that as many people as possible are able to have access and understanding about systemic problems wrong with the Australian health care system and what it can do to families like ours who are injured by it – especially to my husband Don, who was already vulnerable, having being a C5/C6 Quadriplegic since 1982. The website is: withoutduecare.com.au.

I thank you for your help and appreciate any help you can give me in ensuring those who caused my husband’s suffering and death to be accountable. And, hopefully, to change the public health care system in Australia, so that injury and death caused by medical error will be investigated, as with any other wrongful injury and death. And, that those accountable will be made to answer for their actions.

Therese Mackay, Port Macquarie, NSW

Enjoyable read Link is a fantastic magazine. I really look forward to receiving it. The standard of journalism is fantastic.

I love the variety of topics. Well done!

Brenda Gabe, Mulgrave, VIC

Send you event snaps to [email protected]

letters to link

Winning letter – Eyes wide openOver 20 years ago, I temporarily lost the sight in my right eye due to a condition called optic neuritis. This happened as I was about to enter Year 12.

After medication, my sight returned but for a then 16-year-old, the whole experience evoked a range of emotions. During the recovery process, I was lucky to meet a group of young people with vision impairment. They were an amazing bunch and gave me such inspiration.

Last week, I reunited with one of the guys from that group. He had just completed a trip around the world and stated plans for writing a novel. People, who are blind or have vision impairment, don’t limit themselves and neither should society. My friend is an example of someone with his eyes wide open.

Linda Nathaniel, Lane Cove, NSW

Tough workI read Catherine’s article, Tough Work (October 2010 issue), with great interest. I have suffered mental illness for many years and I find more than anything the demands of the workplace very challenging and it has had a negative impact on my condition.

The pressure to consistently perform at very high levels must be difficult enough for anyone but, in particular, those who suffer from a mental health condition. My heart goes out to Catherine. It seems she has much to offer and I wish her all the best in the future.

Penny, Melbourne

Why did they say …?A 1990 car crash, my heart stops three times, and so, my life as a “disabled” guy starts.

The doctors’ words to my family at the time? “Sorry, but your son will never walk and never not need care for most of the rest of his life − and this may only be four or five years if he is lucky.” That was 21 years ago. I now walk with a slight limp, because I have lost 10 per cent movement from my left leg and arm. I was meant to spend the rest of my life in a wheelchair.

When it happened, I remember nothing. My life didn’t pass before me to see − no bright lights, not a thing. I just recall awakening in hospital after a six-week coma.

Doctors I thank in a big way for saving me, but question their divine wisdom in telling my family the worst prognosis.


news bites

SA’s Dignity for Disability MLC Kelly Vincent has welcomed the release of the Productivity Commission’s draft report into a National Disability Insurance Scheme (NDIS) in February.

The Commission has recommended the Federal Government establish an NDIS − a scheme, which would guarantee people with disabilities access to services like care, equipment, accommodation and carer support.

“This is a landmark decision,” Vincent says. “There are so many people with unmet needs in our community and this draft report is a positive step toward improving their lives immeasurably.”

Still, there are some details in the report, which she says are cause for concern. “The Commission’s decision to recommend an extra scheme, the National Injury Insurance Scheme (NIIS), alongside an NDIS is worrying.”

According to the Productivity Commission’s report the NIIS would cater for people, who acquire a disability through a workplace accident or catastrophic injury. Vincent says: “Under two schemes there is no guarantee that individuals with the same level of need will receive the same services. If this recommendation were adopted someone, who acquires quadriplegia through a workplace accident, may get less or more support than someone born with quadriplegia. This is unfair...”

Further, Vincent says: “I am also concerned that the Commission’s vision for an NDIS excludes people with mental health issues, who could be desperately in need of help.”

The Commission estimates the cost of an NDIS to be $6.3 billion per year on top of funds already put towards disability services. The recommendations state this money should be provided by the Federal Government through General Revenue, which Vincent supports.

The money will be used to assess individual’s needs and offer them a tailored care package or the option to spend the resources on services of their choosing, which Vincent applauded. Adding: “I am also delighted they have recommended services be offered to informal carers.”

As well, Vincent applauded the Commission for recommending the Federal Government provide extra funding to relieve current unmet needs, while a NDIS is being established.

The Productivity Commission is asking for feedback on the draft report and recommends the NDIS begin rollout in early 2014.

Others’ comments on the report

Max Dyason, Bedford Group:

“We think the report is very encouraging. It talks about providing the same services and more opportunities − that can’t be bad. It talks about choice and power for people with disability − a very good thing. Services will be encouraged into service excellence and innovation with payments from governments based only on outcomes… Any reform that provides choice, portability and puts people with disability ‘in the driver’s seat’ has to be good, so we’re

hoping our governments will adopt its recommendations.”

Phillip Beddall, Physical Disabilities Council of SA:

“Anything that alleviates the unmet need is well-supported. We’d be supportive of a transitional funding arrangement, while the NDIS is put in place. We’d also be very supportive of community education around the scheme.”

No laughing matter for comedianVIC Comedian Catherine Deveny’s controversial comments seem to have cost her yet another job. Deveny lost her column in The Age after posting on Twitter that she hoped 11-year-old Bindi Irwin would get laid and Rove McManus’ new wife wouldn’t die of cancer.

The government has now decided not to reappoint her as an ambassador for the International Day of People with Disabilities, a Senate estimates hearing has been told. Her role in the 2009 event caused an outcry among some people in the disability sector, who were critical of comments Deveny made on Twitter and in print. In particular, references to a mother “chucking her annual Christmas spastic” and describing suburbanites as “brainless retards”.

Landmark move for people with disabilities


Parliamentary Secretary for Disabilities Jan McLucas says Deveny’s appointment to the ambassador role by former disabilities minister Bill Shorten had “troubled her”. But, she noted that Deveny, who has dyslexia and children with disabilities, did have some insight into the disability world. “I find [the comments] hard to defend, but I acknowledge that as a person with a disability she has a space to say some things [others] can’t.” – AAP

In briefSA A passion for matching people with a disability with job opportunities in Adelaide’s northern suburbs has earned Wayne Stueve special recognition from the City of Playford. Stueve’s ongoing service and dedication through Personnel Employment, a division of Barkuma Inc, meant being recognised with a Celebration of Ability Outstanding Achievement Award in business and employment on the International Day of People with a Disability.

NSW Rugby league team Cronulla Sharks has signed on a novel football club member − YouTube sensation Keenan Cahill. The lip-syncing 15-year-old, who has the rare genetic disease, MPS Type 6, has produced a clip of himself, miming the club’s theme song and dancing in a club jersey. Cahill is a worldwide megastar, with his YouTube channels having had more than one billion views. Since finding fame, he has collaborated with rapper 50 Cent and music producer David Guetta.

SA The AGOSCI 10th Biennial Conference will be held at the Adelaide Convention Centre from May 11 to 14. AGOSCI is a group representing people with complex communication needs. The program will include presentations from Australian and international speakers, workshops, a welcoming cocktail party, a celebration of AGOSCI’s 30th birthday and a formal dinner. alloccasionsgroup.com/AGOSCI2011.

NAT Telstra has lodged its fifth Disability Action Plan with the Australian Human Rights Commission. Recognising the benefits that modern information and communications technologies bring to people with disability, the plan details Telstra’s actions across the three key areas of its diversity and inclusion framework − its customers, its communities and its people. To view the plan, visit telstra.com.au/abouttelstra/commitments/disability-services/action-plan-history/index.htm.

Playground signage gets the thumbs-upQLD The Queensland Government is committed to ensuring that all children, including those with a disability, have equal access to playgrounds through its All Abilities Playgrounds Project.

Its new play spaces are being created by local governments in collaboration with the Department of Communities (Disability Services), local communities and industry specialists.

As well, Bilby Publishing has donated its time − and sign language images − to design the special greeting boards for equipment and area zones within each playground. “These playgrounds are the first in Australia to incorporate Auslan sign boards and we look forward to seeing many more,” says Lee Bilby, the founder of Bilby Publishing.

A recent study by Bilby Publishing found that, in NSW alone, more than 16,000 children rely on Auslan to communicate. These children are not only deaf. Today, Auslan is also being adopted to help children with Down syndrome, cerebral palsy, speech dyspraxia and autism to communicate. Visit communities.qld.gov.au/disability/community-involvement/queensland-all-abilities-playground-project

Year 1 student Kate Pemberton at an accessible school playground.


senior news

Green thumbs up for community garden VIC Aged care residents of Doutta Galla Avondale Heights celebrated the offi cial opening of new raised garden beds at the East Keilor Sustainability Street Community Gardens in the company of celebrity gardener Vasili Kanidiadis.

Raised garden beds allow older people and those with a disability to keep their hands in the earth and connected to like-minded green thumbs.

Doutta Galla chief executive offi cer Mark Anderson says the exercise and pure enjoyment of gardening benefi ts resident health. “Gardening stimulates the senses and is a great source of exercise to maintain mobility among older people.”

Th e East Keilor Community Gardens received its fi rst raised garden bed in 2006. Popular with Doutta Galla Avondale Heights residents, secretary Margaret Marshall approached the council for a second raised garden bed to suit wheelchair-using residents. Both beds are now used by the residents, who tend gardens on a fortnightly basis.

BOOK

� e Second Half Of Your Life by Jill Shaw Ruddock (Random House)

Th is positive, life-affi rming book for women, aged over 50, encourages them to make the most of their post-menopausal years. Th e Second Half of Your Life is about how to achieve fulfi lment in all aspects of their life. And, it provides guidance on how to tackle the problems life throws their way, from menopause, ageing, separation and divorce, to rediscovering love and sex, and balancing the expanding body with the

expanding mind! In all, it is about reinvigorating the best in themselves and making sure that the second half of their life is as fulfi lling and exciting as the fi rst half.

Top: Burt Keighley and Doutta Galla CEO Mark Anderson.

Below: Joyce Douglas cuts the ribbon with Vasili Kanidiadis, Margaret Marshall and Neville Smith.

New Products

Feeling zenHelp raise money for Autism Qld, with this funky, green-and-blue wrap bracelet, $32. Made of black leather, silver beads and beautiful Japanese glass, it’s a simple statement piece, which also has meaning.

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Safe asTunstall Healthcare has just launched the new Tunstall Safe Socket, $44.20 − a simple plug-in device, which allows your personal alarm to take priority of your phone line. tunstallhealthcare.com.au

Banding togetherMedical ID alert brand Mediband’s current wristband range features branded versions in diff erent styles, catering for more than 20

diff erent medical conditions. Th is includes a range of reversible “designer” bands, $9.95 each, which can be worn without outwardly displaying medical information. mediband.com.au

Skincare for aged careMenalind’s skincare range is eff ective for patients in aged care facilities − particularly those with incontinence. Caregivers have reported fewer urinary tract infections and an improvement in skin condition when using the products. Priced under $10.

hartmann.com.au

Super hydratedNew HydroTac wound dressing is the only coated foam on the market, with a hydrogel contact layer, allowing moisture to be both absorbed and donated to the wound bed.

Th is creates the optimal moisture balance for faster healing. hartmann.com.au

Tunstall Healthcare has just launched the new Tunstall Safe Socket, $44.20 − a simple plug-in device, which allows your personal alarm to take priority of your phone line.

with a hydrogel contact

Medical ID alert brand Mediband’s current wristband range features branded versions in diff erent styles, catering for more than 20

diff erent medical conditions. Th is includes

Top: Mouth painter Urania Michealidas with Simon Nette from LeadershipPlus.


link | art

Arty bites!• The Disability & Arts Transition Team (DATT), a

partnership between Community Arts Network SA and the Disability and Information Resource Centre, has created a website to cater to the needs of artists with disabilities, disabilityandarts.net.au. Check it out!

• Accessible Arts has announced the TAFE-accredited Disability Awareness & Access training course dates for 2011 − May 30 and November 7. The four-hour training session will increase participants’ understanding of disability and access issues in an arts context. For more details, email [email protected].

Top: Mouth painter Urania Michealidas with Simon Nette from LeadershipPlus.

Michealidas has Multiple Sclerosis and uses her head to control her wheelchair. She first took up mouth painting to give herself another challenge and is now getting a number of requests from the Maribyrong community in Melbourne.

The Go For Gold Scholarship is awarded to people with multiple sclerosis across ACT, NSW and Victoria, who display a goal and the potential to achieve it. It covers various aspect of life, including employment, sport, travel, education and the arts.

Applicants are asked a series of questions on how they are coping with MS and how $3000 would make their dreams come true. Michealidas took out the $3000 prize, as well as another $2000 for the most outstanding application. She plans to spend her prize money on art lessons and more supplies and also says: “I hope to have enough paintings completed for an exhibition by next summer.”

Mouth painting worth its weight in gold

If you

can

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are lucky

Do you know someone who is vision impaired, has a disability, or can speak, but not necessarily read English - their second language; With 17 RPH stations around the country, there is a Radio Reading Service near you - or them - that will keep them in touch with the printed news and allow them to still enjoy a good book. Go to www.rph.org.au to find out which station is nearest and start a new chapter in their life.

VIC: Doutta Galla Yarraville resident Urania Michealidas was recently awarded Ms Society’s Go For Gold scholarship for her outstanding mouth paintings.

film | laura greaves

My Left Foot (1989)Directed by Jim Sheridan and starring Daniel Day-Lewis – who won an Oscar for his role - My Left Foot tells the true story of Irishman Christy Brown, who was born with cerebral palsy and could control only his left foot. Brown overcame poverty and prejudice to become a celebrated writer and artist.

I Am Sam (2001)Oscar winner Sean Penn stars as Sam Dawson, who has an intellectual disability and is a devoted father to sparky six-year-old Lucy. When Sam is deemed an unfit parent and Lucy is placed in foster care, he hires a high-powered lawyer in a desperate bid to get his daughter back.

At First Sight (1999)Based on a true story, At First Sight asks the question, ‘How much of your identity is linked to your disability?’ Val Kilmer plays a massage therapist, who is blind, until his vision is restored by surgery. He struggles to adapt to his new sighted life.

Children of a Lesser God (1986)Based on the Tony Award-winning play of the same name, the then-21-year-old Marlee Matlin won an Oscar for her role as Sarah Norman, a woman, who is deaf and falls in love with a speech teacher at the school, where she works as a cleaner. Deaf since she was 18 months old, Matlin is arguably the world’s most successful actor with a hearing impairment.

Born on the Fourth of July (1989)Tom Cruise received his first Academy Award nomination for his powerful portrayal of real-life Vietnam War veteran Ron Kovic, who was shot and paralysed in battle. On returning to America, Kovic felt alienated from his family, friends and the wider community, both

Aussie heroesShine (1996)Geoffrey Rush earned an Academy Award for his portrayal of gifted pianist David Helfgott, who suffered a mental breakdown and spent years in institutions.

Tim (1979)Mel Gibson stars in this tale of the developing relationship between an older woman, Mary (Piper Laurie), and a younger man, Tim, who has a developmental disability.

The Black Balloon (2008)This homegrown sleeper hit examines the struggles of a lonely teen (Rhys Wakefield) left to care for his older brother, who has autism (Luke Ford).

because of his disability and his veteran status. Kovic, still a vocal anti-war campaigner, co-wrote the screenplay with director Oliver Stone.

Forrest Gump (1994)This heartwarming story centres on the extraordinary character of Forrest Gump, who has an intellectual disability. This quirky comedy-drama won six Oscars and earned more than $670 million at the Box Office. Tom Hanks stars as the titular character, whose disability doesn’t stop him from becoming a war hero, Olympic ping pong champion, millionaire shrimp farmer, devoted husband and father.

Rain Man (1988)Scooping four Academy Awards, Rain Main tells the story of selfish yuppie Charlie Babbitt (Tom Cruise), whose estranged father dies and leaves his multimillion-dollar estate to his secret other son, Raymond (Dustin Hoffman), who has autism. The film aroused controversy in that it was blamed for creating the stereotype that all people with autism have savant skills, but it was also applauded for dispelling misconceptions about the disorder.

Laura Greaves is a freelance journalist and screenwriter. lauragreaves.com

Before The King’s Speech swept the

board at this year’s Academy Awards, the

heroes and heroines of these fantastic flicks proved that

disability is no barrier to achievement – in

life or on the silver screen, as Laura Greaves reports.


Outside the box Freak show

entertainment | the freak and the showgirl

British performer Mat Fraser and his American fiancé, Julie Atlas Muz, recently brought their show, The Freak and the Showgirl, to Oz, celebrating showgirls, disability and nudity.

This loved-up duo met while doing solo performances at New York’s Coney Island sideshow in 2006. Fraser is an actor, comic, drummer and TV host, with shortened arms as a result of his mum taking thalidomide during pregnancy in the ‘60s. Atlas Muz is a beauty queen. Fraser had a cheeky chat with Link before hitting our shores.

Tell us about your show.We’ve mixed cabaret, sideshow, vaudeville, comedy, striptease, of course (Julie was Miss Exotic World and Miss Coney Island 2006, so it would be churlish not have her strip!), a lot of edgy humour, songs, and an audience beer-drinking competition to create a new show that entertains, shocks, celebrates and reboots the libido. Plus, it confronts notions of perfection and what is and isn’t sexy!

How did you feel when you first laid eyes on your co-star and fiancée, Julie?Simultaneously horny, in awe, artistically appreciative and a little scared! She was doing her famous, “severed hand” strip at the time. It was May 5, 2006, at the Coney Island sideshow on a burlesque night, which I was MC-ing and she was performing in – and something in me just knew things were going to be different after that.

Do you ever get protective of Julie during the more risqué parts of her performance?Not really, as she is in such control, but when I’m watching and there’s a group of lairy guys, of course, my Navy SEAL kicks in and I get ready to steam in if needed! [But] I’ve seen her handle very dodgy stuff with such ease and aplomb, there’s nothing to worry about really. We both have to flirt and pretend to fancy others onstage as part of our work.

You also do film/TV work, martial arts and drumming. Is there anything you can’t do?Well, the reality is that I’m a jack of many trades and a master of none as a result! I started adult life, drumming professionally for 15 years – then gave it up for 15 years as I developed my writing and acting, cabaret and songs. But, I have come back to drumming recently, as well as continuing to do all the other stuff too... Fitting it in can be a problem, yes, but I am a virtual workaholic, so I seem to manage.

Aside from Adelaide, of course, what’s the best place you’ve visited as a performer?The opera houses in Braga, Portugal, and Versailles, Paris – especially so, because each time I got naked and entertained with adult themes, causing me to be spat at by a Catholic nun and applauded by very posh Parisians respectively!

Freak show



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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


entertainment | celebrities

Cher, American singer and actress, has dyslexia

Allan Pineda Lindo Jr (best known by his stage name, Apl.de.ap), a member of US hip hop group The Black Eyed Peas, pictured, has the eye disorder, nystagmus, which has resulted in chronic blurry vision and severe nearsightedness

Albert Einstein, German theoretical physicist, had a learning disability, including not speaking until age three and difficulty with maths and writing at school

Alexander Graham Bell, Scottish scientist and inventor, credited with inventing the first practical telephone, had a learning disability

Anne McDonald, late Australian author and activist, had severe athetoid cerebral palsy due to a birth injury

Brian Wilson, American musician, best known as the leader of The Beach Boys, has hardly any hearing in his right ear

Thomas Edison, American scientist and inventor of incandescent light bulb and phonograph, had a learning disability, including not being able to read until he was 12 and difficulty with writing, even when older

Francisco Goya, Spanish painter (1746-1828), an illness left him deaf at age 46

Helen Keller, American author, political activist and lecturer, was blind, deaf and mute

Ian Dury, English rock and roll singer (including song Hit Me With Your Rhythm Stick), had a movement/walking disability, resulting from polio. (His song, Spasticus Autisticus, was banned from radio, with the lyrics misconstrued as “disabled-ist”.)

John Milton, English Author/poet (1608-1674), became blind at age 43

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Lord Byron, British romantic poet, born with a club foot

Ludwig van Beethoven, German composer and pianist, became completely deaf

Marla Runyan, American runner – in Sydney in 2000, she became the first athlete, who was legally blind, to compete in

an Olympics

Marlee Matlin, American stand-up comedian and actress, became deaf in

infancy due to Roseola infantum, won an Academy Award for best

actress in the film, A Children of a Lesser God, in 1987

Michael Bolton, American singer-songwriter, deaf in one ear

Ray Charles, American musician, completely blind by the time he was

seven

Rick Allen, drummer with English hard rock band Def

Leppard, lost his left arm in a car accident

Robin Williams, American actor and comedian, diagnosed to have

Attention Deficit Hyperactivity Disorder (ADHD) as a child

Sarah Bernhardt, regarded as France’s greatest actress (1844-1923), a knee injury saw her leg amputated in 1914

Steady Eddy, Australian comedian and actor, has cerebral palsy

Stephen Hawking, an English theoretical physicist and cosmologist, a motor neurone disease, known as amyotrophic lateral sclerosis (ALS), has led to him using a wheelchair and he needs a computer to speak

Stevie Wonder, American singer, songwriter, instrumentalist, and record producer, born blind

Tom Cruise, American film actor and producer, has dyslexia

Whoopi Goldberg, American comedian, actor and talk show host, has dyslexia

These famous people haven’t let their disabilities get in the way of their success. Illustration by Daniella Caruso. Call anyone,

anytımeInternet 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

Scholarships help Paralympic athletes fulfill their dreams

NSW Four scholarships, valued at $10,000 each, were presented to Paralympic athletes to help them achieve their goal of representing Australia at the 2012 London Paralympic Games.

The scholarships, presented by NSW Finance Minister Michael Daley, are part of WorkCover NSW’s four-year $1.2 million sponsorship of the Australian Paralympic Committee.

The successful recipients were chosen by a panel consisting members of the Australian Paralympic Committee and WorkCover NSW.

The four athletes to receive scholarships are:

• Scott Reardon, 20, from Temora, who is Australia’s top-ranked 100 and 200m runner in the T42 classification for above and through the knee amputees

• Jayme Paris, 20, from Plumpton in western Sydney, the number one ranked C1 para-cyclist rider in the world

• Brett Stibners, a 31-year-old wheelchair basketball player from Oak Flats in the Illawarra and a member of the Australian Wheelchair Basketball Team, and

• Swimmer Sian Lucas, 20, from Grose Wold near Richmond, who is the world’s fifth-ranked 100m backstroker in the S10 Class.

Above: Brett Stibners, left, Jayme Paris and Sian Lucas with MP Michael Daley.

When the Brissie to the Bay ride launched in 1992, a modest 500 participants took part. How it’s grown! This year, organisers expect 5000 participants to register for the June 26 event and hope to raise an incredible $500,000.

“The diversity of participants is one of the things that makes the ride so popular,” enthuses MS Australia QLD event manager Julia Faul. “Best of all, a number of people with MS are able to take part – there really is a distance for everyone.”

MS is the most common chronic neurological condition, affecting young adults. More than 20,000 Australians live with the disease and the average age of diagnosis is just 30. brissietothebay.com.au

Led by former Aussie cricket captain Steve Waugh, key Australian organisations supporting rare diseases united on World Rare Disease Day − February 28 − to call for major improvements in care for those affected by rare illnesses under the banner of Rare But Equal.

Paralympian program gets safety message to workersNSW Almost 10,000 workers across NSW participated in WorkCover NSW’s Paralympian Speakers Program during 2010 − and employers are being encouraged to register for the program in 2011.

The Paralympian Speakers Program involves workers, hearing the stories of seven WorkCover-sponsored Paralympians about the injuries they have experienced, their long road to recovery and why workers must put safety first. During 2010, the Paralympians visited more than 180 businesses, playing a vital role in raising awareness of the importance of workplace safety.

To book a speaker or find out more about the program, visit workcover.nsw.gov.au.

20 years on, Brissie to the Bay is bigger than everQLD Brisbane’s biggest charity bike ride will mark its 20th birthday this year and expects to attract the largest field of participants ever, raising vital funds for people living with multiple sclerosis.

sport | geoff huegill

What made you take part in the MS Mega Swim fundraiser? The road out of retirement was a long one and I am keen to use my achievements to inspire others to be the best they can be. MS Mega Swim is a 24-hour team relay initiative that almost anyone can undertake. It requires teamwork, cooperation and a bit of hard work – and I can certainly relate to that.

Do you have any personal link with MS or just think it’s a worthy cause? I don’t have a personal link with MS, but when I heard that the average age of diagnosis is just 30 – a year younger than me – it shocked me. This is a progressive and often debilitating disease and it strikes people in the prime of life. MS Australia performs a vital function and I’m keen to support them through the Mega Swim fundraiser.

How much time do you usually spend in the pool daily? Depending on what day of the week it is, generally most pool sessions last up to two hours. Some days we have two sessions per day and others are just one. On top of that, we generally do at least one dry land session per day − weights, running, spin, core and so on.

Has your gold medal win at the Commonwealth Games sunk in yet? Sort of, but not really! I recognise how big of an achievement it has been but, most importantly, how much it’s really

Diving in

When I heard that the average age of MS diagnosis

is just 30 – a year younger than me – it shocked me.

touched everyone. We’ve all struggled from time to time in our personal lives, either through ups and downs or even through weight issues. For me, my motivation to swim was to inspire others out there to have a go in life. Whilst it has sunk in, I won’t really realise how much until years after I’ve retired.

Your best tips for losing any extra kilos? Consistency is the best tip I can give people. Creating a food diary will also help. Just like doing a budget, how do you know what or how much food you’re eating unless you write it down? From here, you can start to curb your diet and gradually cut out the wrong foods on a day-to-day basis.

When you’re not in the pool, what are your fave pastimes? When I’m not in the pool, I’m busy at work. I have a company that heads down three parts − sponsorships, media and a coaching program. When I’m not swimming or working, I like to spend my time with my family and friends.

What’s next for you in 2011? This year, there’s a World Championships in Shanghai [in July] – it’ll be the last major hit-out before the London Olympics. My main focus will be on working on all of the little things to put myself in the best position to come home with a medal.

Visit megaswim.com to sign up for a swim or make a donation.


Comeback king of the swimming pool Geoff Huegill is the Queensland ambassador of the MS Mega Swim fundraiser, where participants spend a day in the pool to support people with multiple sclerosis.


link | food

Pasta BakePumpkin and Spinach

Ingredients (serves 4)

• 1/2 teaspoon coriander seeds

• 600g butternut pumpkin, peeled, cut into 2cm pieces

• Olive oil cooking spray• 200g San Remo wholemeal

penne pasta• 1 cup fresh low fat ricotta

cheese• 1 egg, lightly beaten• 50g parmesan cheese, grated• 250g packet frozen chopped

spinach, thawed

Method

1 Preheat oven to 200°C. Line a large baking tray with

baking paper. Grease an eight-cup capacity, 6cm-deep, 20cm (base) square baking dish.

2 Using a mortar and pestle, pound coriander seeds

until crushed. Place pumpkin on prepared tray. Lightly spray with oil and sprinkle with coriander. Season with salt and pepper. Roast, uncovered, for 15 to 20 minutes or until just tender. Remove from oven. Reduce oven to 180°C.

3 Cook pasta in a large saucepan of boiling,

salted water, following packet directions, until tender. Drain. Combine ricotta, egg and parmesan in a large bowl. Squeeze excess moisture from spinach. Stir spinach, pasta and pumpkin into ricotta mixture.

4 Spoon mixture into dish. Bake for 20 to 25 minutes or

until set in centre. Allow to cool completely. Cut into four pieces.

Thanks to San Remo, sanremo.com.au


Benefi ts of wholemealKerry Leech is one of Australia’s leading sports dietitians and the author of two San Remo pasta recipe books. She works with the Australian Netball Diamonds and is a partner at Eat Smart Nutrition Consultants in Brisbane.

“Wholemeal pasta is a simple, tasty and nutritious meal option. In addition, it is a great way to increase the fi bre content in your diet,” Leech says. “Australians should be aiming for at least 30 grams of fi bre in their diet per day. Th is means that if you’re not getting enough fi bre in your daily eating plan, a serve of wholemeal pasta can easily help.”

Leech adds: “Wholemeal pasta has a distinct taste and adds a fuller fl avour to pasta dishes. It goes best with stronger-tasting sauces, particularly those with a tomato base. Wholemeal pasta is a great option for strong, rich-tasting dishes such as lasagna. It is also packed with wholegrains and B-Group vitamins, helping to boost our intake of these each day.”

Food Bites: Graduation time for Bedford’s Let’s Cook program!Th e Good Guys Edwardstown – supporters of SA disability organisation Bedford’s Let’s Cook program – presented certifi cates and a frying pan to each of the 40 participants at a graduation ceremony in December.

Developed to address the cooking skills shortage among people with a disability, Let’s Cook teaches participants how to prepare simple meals by a qualifi ed instructor and encourages them to transfer their learning to their housemates under the supervision of their care worker.

“Cooking is a key to being more independent. We also want to help residents make the best choices, so being able to make healthy meals more cost-eff ectively is benefi cial,” says Samantha Abbott, Bedford’s general manager of marketing and fundraising.

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leisure | danyele t. foster

DiagnosisPrior to November 2007, my life was in a state of constant instability and had been for a considerable time.

You see, until three years ago, I lived the existence of a person with undiagnosed High-Functioning Autism. Although my ‘official’ diagnosis is that of HFA, for ease of communication, I usually introduce my diagnosis as that of Asperger’s Syndrome. Besides, one can only say High-Functioning Autism so many times before people’s eyes start to glaze over, and it doesn’t exactly trip off the tongue does it?

And really, the diagnosis of HFA was due in part to my then clinician’s rigid interpretation of the DSM IV*, as well as the [mutual] awareness that the HFA diagnosis might gain me more recognition and support.

Prior to this, misunderstanding, harassment, abuse and inadvertently placing myself into dangerous situations (due to ‘advice’ from dubious acquaintances, inherent social naivety and my profound longing to fit in) had characterised my life. I had really hit rock bottom, with none of the markers of societal success … no degree, career, friends, partner, money.

When Danyele T. Foster received her diagnosis of disability, it was two recreational organisations that gave her the assistance she needed most.

Riding high

has enabled me to have far outweighs any negatives of being ‘labelled’. Frankly, a person with Autism/Asperger’s is going to be stigmatised anyway, and in my opinion (though others may have differing views) it is better for others to know the truth.

And besides, if people know and still persist in their behaviour towards you, one can perhaps have legal recourse under the Disability Discrimination Act − or failing that, at least the moral high ground (apologies if that sounds trite or flippant, it is certainly not meant that way).

Post-diagnosisMy journey following diagnosis has not been a linear one. It has contained many bumps and reversals, rocks and slippery slopes, and will continue to do so. But, largely, I have made consistent, steady progress, which is due to the dedication, support and love of my mother, and two extraordinary organisations, which have enabled me to achieve things that I thought I never would.

One of the organisations that has assisted me so greatly is the North Queensland Riding for the Disabled Association. I have always loved horses and rode as a child, but through riding with NQRDA, I have made real progress in terms of skill acquisition and also in the social, emotional and physical realms. NQRDA gives me a purpose and goals to strive for.

Additionally, my self-medication issues were spiralling out of control and I was digging myself into a further world of pain and despair, and causing my parents, particularly my mother, intense torment. One could say, with complete lack of melodrama, that my life was in crisis.

Metamorphoses arise either because (1) people choose change or (2) external events initiate change. In my case, the latter occurred.

A new doctor arrived to replace my previous GP and, after summoning my courage (severely battered after a lifetime of being dismissed by assorted clinicians, as well as others), I asked for a referral to a speech pathologist for an assessment. She then asked why, and so I told her.

After listening to my story, she said that in all likelihood, I had Autism Spectrum Disorder, and referred me to the speech

pathologist, who concurred that this was a likely diagnosis. I was then referred to a

psychologist and, after a lengthy process, I finally had my diagnosis. At last, I had an answer, my life started to make sense, and both my mother and I had validation after so many years of being dismissed by all and sundry.

Certainly it has not been an easy process, nor is it a finite one, but the insight and support that the diagnosis

One could say, with complete lack of melodrama, that my life was in crisis.


Top: Danyele with her bay thoroughbred gelding, Enzo, named after an Italian Ferrari, which she says is ironic given his quiet, lovable character!

ContactsNorth Queensland Riding for the Disabled This not-for-profit organisation enables people with disability to develop equestrian skills. Offers horse riding camps, riding lessons and trail rides, and is a member of Riding for the Disabled Association of Australia. Provides skills development for all levels of horse riding. Volunteers and donations are always welcome. Phone secretary Irene Chapman on (07) 4091 4876.

Riding for the Disabled Association of Australia Details of Riding for the Disabled centres across the country are at rda.org.au.

Wheelie Easy Supported Holidays & ToursWheelie Easy offers the following services:• Free information sheets on wheelchair-related

tourism, such as transport, hire, accommodation and tourist attractions.

• Guided tours with on-board disability trained staff and wheelchair hoist-equipped bus.

• Holidays for individuals and small groups (3-6), some with and some without wheelchair access in mind.

• Day outings for locals of the Cairns and Tablelands region.

• Travel companion - Wheelie Easy staff can accompany you on your holiday within Australia or beyond.

wheelieeasy.com.au, ph (07) 4091 4876

The horses, staff and volunteers are exceptional. It is truly a place, where both people and animals are respected, nurtured and real achievement is possible. I only wish that I could both ride more often and accomplish more to assist this wonderful place which has allowed me to live one of my dreams.

The other group, which has enabled me to further my horizons is Wheelie Easy Supported Holidays and Tours, a progressive company that gives

people with (and without) disability an opportunity to travel within Queensland and abroad. The equestrian camps I have attended have whetted my appetite for further adventure.

Wheelie Easy staff are unfailingly dedicated, considerate and passionate about what they do. This shines through in their interactions with each other and their clients, and I can heartily recommend Wheelie Easy as a tour operator of choice for anyone.

Although I will always struggle with certain aspects of life, I am in a much better place than I was a few years ago. Truly, I would never have imagined that I would be where I am today − and I thank both North Queensland Riding for the Disabled and Wheelie Easy for playing a substantial role in that.

My life, and my mother’s, has been forever enriched and the path ahead looks brighter than it once did.

* Diagnostic and Statistical Manual of Mental Disorders


cover story | tim ferguson

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Melbourne comedian Tim Ferguson greets me with a grin from under his trademark fringe.

It’s a familiar image to those people who, like me, followed him during his days as a Doug Anthony Allstar and as host of Don’t Forget Your Toothbrush.

Also familiar is his lanky, slightly lopsided way of walking. It’s more pronounced now, and he leans on a walking stick, a result of the Multiple Sclerosis (MS), which was diagnosed in 1996, a year after he left the Allstars.

“The group had finished and I’d had some big episode when we were doing the West End season,” Ferguson explains. “I went on like a trooper, looking like a stroke patient. There are a lot of handsome, good-looking stroke patients and, luckily, I was one of them. It was very odd and it had happened a few times and finally when we got back to Australia I went to the doctor… I was daunted, but I wasn’t terrified because I just figured whatever it is, it is.”

Despite coming to terms with the diagnosis, Ferguson was reluctant to announce it to the world until last year. “I’d been telling a few more people… but I don’t want strangers to know about it because they’ll just worry and I’m not particularly worried because I have this theory – I only worry about what’s happening right now.”

It was during an interview with Peter Wilmoth for The Weekly Review that he decided he was sick of making up excuses for his leg, like “it’s just a bit gammy, I fell off a cliff, got bitten by a shark, I was practising Karma Sutra moves and the billiard ball slipped and I fell on the vacuum cleaner”. “So I said, ‘All right, print and be damned,’ and he put it in the article. It is kind of easier. I don’t tell everybody. The cab driver asks me, [but] I don’t want the conversation about how his cousin has it… But generally it’s kind of easier.”

Ferguson’s new one-man show, Cane and Able, premieres at Perth’s Wild West Comedy Festival in May. It will be his first major season since leaving the Allstars.

“I do a lot of small gigs, and every time I do it, I always walk off saying, ‘You dummy, you

should do a show’,” Ferguson says. “There are things out there that make me furious and comedy is the best way to deal with that… [As for] Cane and Able, it’s going to be part stories from the warfront of comedy, part stories from the battlefront of my head and a little bit part of life’s journey and my principles for surviving it. About just getting on with life, about how small we are, about creativity and what it means.”

“I’ll be talking about the MS a little bit, because I’ll be walking on with a cane. In fact given the up and down, on and off nature of MS, I could be wheeled on in a gurney, but I doubt that’s going to happen. I’ll talk about that a bit because it’s really quite funny, in the sense that it’s scary and scary things are funny, because laughter is an involuntary physical response.”

Ferguson’s analysis of laughter points to another of his passions − training the next generation of comedians and scriptwriters. “I want to dramatically change film and television in this country and the way it’s written.” Ferguson imparts his wisdom in his comedy writing classes for film students at RMIT in Melbourne. He also runs two-day intensive comedy writing courses based on his book, The Cheeky Monkey: Writing Narrative Comedy (Currency Press).

“I think it’s important for a new culture of comedian to emerge,” Ferguson says. “Something new has to happen, so I thought I’d try and come up with new ways to look at this, which are outside the accepted culture of comedy, part of which was the Allstars way of doing things.

“Take the piss out of God, talk about sex with nuns, all that stuff, but to take it out of the inner city, which is where comedians are coming from… The ‘inner-city, tortured, self-satisfied, atheist, marketing degree, doctorate in philosophy’ people have it coming, because they go and see comedians and are never challenged, because they agree with the comedians. So, when the comedian speaks,

Being diagnosed with MS is the theme of a new stage show for former Allstar Tim Ferguson. Anthea Skinner reports.

He was sick of making up excuses for his leg like “I fell off a cliff, got bitten by a shark or I was practising Karma Sutra moves”

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they’re hearing what they accept as truth… People should always walk away from a comedy gig, feeling happy and that they’ve got their money’s worth, but having something to think about that troubles them… Great comedy makes you cry, makes you laugh, makes you horny and makes you think.”

Ferguson’s aim to make inner-city audiences question their values was made obvious in his tonight show, With Tim Ferguson, which appeared on Victorian community television station channel 31. In the lead-up to last year’s state election, Ferguson spent much of his time lampooning popular Greens candidates. “It’s a perfect example – who watches Channel 31 the most? The inner-city. And what was the first thing I was talking about? The thing they hold most dear.Why? Because it had to be

spoken about. Greens are puritans and they’re absolutists, since when has that not been hilarious?”

Having successfully ensured that the Victorian Greens failed in their bid for Lower House seats, Ferguson now has his sights set on Federal politics and hopes to take With Tim Ferguson to a national audience.

“If Channel 31 will have us back, and we can get other stations interested, we’ll go national. There’s a real audience there and we’re just in it for

cover story | tim ferguson

Author bio: Anthea Skinner was diagnosed with CFS/ME (Chronic Fatigue Syndrome/Myalgic Encephalomyelitis) and Meniere’s disease as a teen. She is a postgraduate student at Monash University’s Conservatorium of Music and gives regular talks on disability issues.

the audience. We got nearly 40,000 people a week in Victoria.” And which Federal politicians does he have in his sights? “It was a bit like boxing smoke, but now that Julia’s cried and Tony Abbott said, ‘S--- happens’, we’ve got a ballgame for comedians.”

Cane and Able runs from May 19-21 at The Astor Theatre in Perth. Bookings: bocsticketing.com.au. For information on Ferguson’s Cheeky Monkey Comedy Writing Courses, go to http://cheekymonkeycomedy.com.



entertainment | tracie sammut

Not many Australian actors can claim a track record of almost two decades work on stage, TV and feature films, unlike Sydney-based Tracie Sammut.

She first graced our screens on ABC TV’s popular 1980s series, G.P., as a feisty 14-year-old. However, her longevity in a notoriously fickle industry is not the only thing that sets her aside from others in the field.

Sammut has taken her own experience of facing discrimination outside the world of acting and used it to create Acceptance – a dynamic series of skills-based performance workshops for people with and without mild intellectual disabilities, aged 16 to 26.

The weekly workshops cover everything from voice and movement to dance and improvisation, often with industry professionals coming along to lend their expertise as guest tutors.

At the end of six months, Sammut expects the group to be able to deliver a devised performance piece, as well as having had great fun, gaining confidence and making some solid friendships.

Sitting across from Sammut on Pier 4 in the heart of Sydney’s harbour-side arts precinct, it’s easy to see how her passion for inclusion persuaded her project partners Accessible Arts NSW, Australian Theatre for Young People and The Australia Council for the Arts to come on-board.

Speaking as a person with a disability, Sammut acknowledges what drives her and the Acceptance project. “Discrimination is a challenge,” she says. “And, I want to use my skills, experience and knowledge as a teacher and be acknowledged for my work, not just with people with disability but to work with the whole community.”

To realise her vision for Acceptance, Sammut contacted Accessible Arts NSW, the peak body for art and disability in that state, to auspice the project as a mentoring opportunity. Arts development officers Alison Richardson and Josie Cavallaro helped her put together a submission to the Australia Council for a Professional Development Grant − Community Partnerships. This approach opened the way for Sammut to build her mainstream contacts, as well as keep the mentoring aspect of running the project alive.

Tracie Sammut has already had spots on Home and Away, All Saints and G.P., and, it seems, there’s plenty more up her sleeve.

Don’t think you are perfect. You can always learn something new.

Sammut’s love of performance, her belief in the value of skill-building to overcome obstacles and her enthusiasm for sharing her unique knowledge shine through her conversation about the possibilities for Acceptance. “I would definitely advise young people that to be a unique performer you need to enhance your skills, put effort in to your development,” she says. “Don’t think you are perfect. You can always come back and learn something new – from teachers and from other students.”

acceptanceGrowing


travel | bruce mumford

On tourThis is the fourth in a series on accessible travelling by Bruce Mumford. This tale

covers the first part of his family road trip to Victoria’s Great Ocean Road.

Planning complete, enquiries made, bookings done, other preparations attempted, packing finalised, fashionable hat selected, chocks away − and we’re off!

From our home at NSW’s Burrawang in the Southern Highlands to the Great Ocean Road in Victoria and return. Nearly 3000km in two weeks. All the family are travelling together in our new car – Ashley, our eldest son, who is 20 and doing law and journalism at uni, Rohan, who’s 16 and focusing on Xbox and soccer at high school, and, my wife, Louise – a multi-tasking superwoman, who is also an art teacher, carer and reality checker.

Our first overnight stop was at Wagga Wagga in NSW at the Pavilion Motel and, here, I was most pleasantly surprised to find that the management had thought “outside the square” to suit our needs.

While an accessible, two-bedroom family unit was not available, we were given two adjoining rooms − one of them accessible, which was more than suitable and at a reasonable price.

Often when booking accommodation, you will find that people in wheelchairs are not supposed to have families or to sleep in anything other than an orthopedic, stabilised bed, with a raising head and lowering end, as well as height-adjustable, rocket-propelled velocity enhancers.

But if you are specific enough about your requirements and stress the need for accessibility only for yourself, most places can find a way of suiting your needs.

The next day, we headed off across the recently flooded plains (and they would flood again just after we’d been through) to Jerilderie. This was a nice example of why it’s worth taking a bit of time getting to your destination.

For most of our trip, I had given us a good amount of leeway between overnight stops, leaving us with plenty of time to explore on the way. I wanted to have a look at the site of Ned Kelly’s famous bank hold-up, where the gang locked the police in their cells, took over the town for a few days and then rode off, leaving behind the now famous Jerilderie Letter − an explanation of their exploits.

A stone cottage at the Grampians


We had a poke around the museum – reasonably accessible once we got in – and were then regaled on the back verandah, next to the quiet ambience of Billabong Creek, by a musician, who performed – just for us – his song about Ned that was part of his travelling show for indigenous children in the area.

Having time to do these sorts of things is what travelling’s all about. As the trip went on, I became increasingly aware of my own physical limitations. Getting in and out of the car, manipulating a manual wheelchair and being constantly “out of my comfort zone” were not things I am used to and really wore me out.

Those with more profound disabilities may well find it vital to schedule in a few “rest days” to allow their batteries to recharge, so that they can more fully enjoy the rest of the trip.

When you have a disability and don’t get out a lot, travelling can be really fun, as well as exhausting. I found myself glued to the window most of the trip − unlike my youngest, who had obviously seen it all before and preferred to look at his iPod most of the trip!

A luggage pod on the roof was a great idea, as it stored most of our bags, leaving enough room in the back for my manual wheelchair. We crossed the Murray River at Barham and stayed at a caravan park in Koondrook on the Victorian side.

It was exciting enough to be introduced to the “en-suite shower”, in which the manager had kindly put a plastic chair for me. My definition of “en-suite” must be different, but anyway the heat

and uselessness of the cabin’s water “cooler” put paid to any ideas of braving the trip up the track to the facility.

A plus for Koondrook though is that is located next to the world’s largest inland island – Gunbower Island – and Louise and the boys had a pleasant walk there.

Heading south the next day, I finally had to submit to the superiority of the GPS over my map-reading. I’d been following our course on my maps with some concern and when the GPS told us to turn right on leaving Koondrook, I could stay silent no longer and insisted we go the other way.

After about 10 minutes, we worked out that the GPS had, in fact, been right and we had to do a U-turn and go back. My navigational reputation − never great − was now in tatters.

Our next stay was for three nights in an idyllic stone cottage at the Grampians. The three-bedroom cottage had been built by Robert Webb, a local farmer, who had been beaten by the drought and bought an old farm, which he regenerated and “made the Grampians come to us”.

With many international tourists, who frequently return to see the plentiful wildlife right outside the door, Robert said: “I’ve made a lot more from kangaroos than I ever made from sheep”.

He originally built the stone cottage for a friend with a disability, who unfortunately passed away before she was ever able to use it. But I found it perfect and just what I wanted in a holiday retreat. The bathroom was set up to be fully accessible and downstairs was very roomy and easy

The boys run and walk a track on Gunbower Island


to get around in a wheelchair. The loft upstairs was obviously not accessible for me, but at least gave Louise somewhere to escape to!

The view of the Grampians from the large windows was just astounding too − and the kangaroos close-up were forever entertaining. While I enjoyed the view, Louise and the boys were constantly walking the wonderful trails of the Grampians, which were just minutes away.

Of course, I discovered a number of things I should have remembered to pack:

• My headband torch (doubles as a book light and great when you’ve no hands for a torch)

• Wet Ones (travel packs are small and handy)

• A few extra T-shirts and light trousers (I find it’s a good idea to take enough clothes to get you through about three days before you have to wash).

• A good compass (I like to know where I’m heading)

• A cushion for the car seat, and

• Lots of plastic bags!

More concerning though, was that the footplate of my lightweight wheelchair looked about to fall off − I wish I’d thought to check all my essential equipment before leaving!

After a most enjoyable few days, we pushed on south to the Great Ocean Road, with our first stay being at the Lighthouse Keeper’s Cottage at Warrnambool’s Flagstaff Hill. The cottage had recently been refurbished and was luxurious, as well as fully accessible.

Flagstaff Hill was a most interesting re-creation of a 19th century port, modelled along the lines of Sovereign Hill. Unfortunately, while the museum and nighttime show were fully accessible, the realistic street cobblestones made it realistically impossible for wheelchairs! My

suggestion is for a scooter to be available – then the whole area will be great to investigate.

I should mention too that the staff at Flagstaff Hill were very helpful to me − one of them actually delivered the crutches I had left behind to our next destination. Without them, things would have got quite difficult!

Leaving Warrnambool the next day, we moved on through gusty squalls to Port Campbell. I rang the helicopter company we had booked with to explain that for me getting in a helicopter would be difficult enough – but in the rain pretty much impossible. They changed the day with no trouble and I was relieved I’d made the effort to ring.

But it was not me, who took the initiative at the Port Campbell caravan park. Even though we had booked ahead, our cabin was inexplicably inaccessible and way past the car park, down the back of the camping area.

Luckily, Louise took command here and explained our dissatisfaction to the office. Amazingly − and at no extra cost − they then gave us a much bigger, ramped cabin, which was just perfect.

The point of all this is not to give up or put up with sub-standard facilities. If you can calmly explain your problem, you’ll often find people more than willing to help.

Most of the lookouts on the Great Ocean Road are easily accessible, with good sealed paths, and it’s well worth a journey out to a couple.

Our car was roomy enough for me to sit in the back the whole trip. I only needed Rohan, who sat next to me, to clip in my seatbelt. One day, I asked Rohan to do my belt up as we were leaving and he point-blank refused. I asked why and he explained: “Remember when we were leaving home dad and you said to leave the old TV plugged in, because we might have a lightning strike, and we’d get it on insurance?”

“Well – we might have an accident …”

To be continued next issue…

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

travel | bruce mumford


film festival | alyssa gill

International Day of People With Disability came with a unique and impressionable experience for me last year − the rebirth of cinema as I knew it.

For people who like their cinema a little bit alternative − a little bit outré and accessible − the Access All Areas Film Festival is the event.

For an event focusing on people with a disability, what better way than with cinema-going − a social, access-friendly, community activity – and 100 per cent Aussie flicks?

Coordinated by events group The Festivalists, the film fest brings the concept of cinema into a new life by offering accessible technologies that enable just about anyone to become a part of the experience.

Access all areas /

Clockwise from top left: The accessible theatres finally gave family and friends the chance to sit with loved ones in wheelchairs throughout the cinema, instead of directly underneath the screen. Local community members shared the all-inclusive, accessible cinema experience. Plenty of popcorn was eaten during the film fest. A scene from Aussie animation film Happy Feet.

In its third year running, the festival brought accessible cinema to film-goers across NSW − in Orange, Wagga Wagga, Parramatta and Sydney − over 12 days. The festival concluded on International Day of People With Disability at the Dendy Opera Quays, with the screening of Aussie film Summer Coda (a romantic tale set against the stunning orange groves of sun-baked Mildura.)

Special guests on the night included 2010 Don’t DIS My ABILITY campaign ambassador Rachel Lazarov, who has a vision impairment and prosthetic legs, and film director extraordinaire Richard Gray (Summer Coda), who flew in from Melbourne.

As my first experience in a fully accessible theatre, the mixture of disability types, which had been considered at the event, was an example of perhaps a changing culture in Oz.

The accessible technologies available included captions, Auslan sign

Accessible technologies, like audio description and captions, made this film fest a little different from the rest, as Alyssa Gill report.

language, audio description, a hearing loop and accessible seating (actually allowing people in wheelchairs to sit next to loved ones, as opposed to directly under the cinema screen).

Not only has this event educated and brought awareness to cinema enthusiasts (some of them without any knowledge or experience of disability), it has also allowed families, friends and partners to share with them one of the most accessed and basic leisurely experiences of people across Australia.

If I could request an encore I would, but one which would surpass age and geographic location, bringing festivals and theatre experiences like this to everyone − no matter their ability.

Alyssa Gill is a freelance journalist and public relations practitioner. She has worked in the non-profit industry for most of her career, including arranging events and support services for people with disability.


link | disability strategy

Long-term vision / A 10-year national plan aims to improve the lives of people with a disability, their families and their carers.

The National Disability Strategy was officially launched in Melbourne on Friday, March 18, by Parliamentary Secretary for Disabilities and Carers Jan McLucas, together with Dr Rhonda Galbally, chair of the National People with Disabilities and Carer Council, Simon McKeon, Australian of the Year, and Professor Ron McCallum AO, Senior Australian of the Year.

“This is the first time in Australia’s history that the Commonwealth, State and Territory, and Local Government have agreed to a unified, national approach to improve the lives of people with disability,” Parliamentary Secretary McLucas said.

“We will continue to work with people with disability, their families and carers, and the disability services sector, to deliver changes that will improve people’s lives. The strategy provides $11 million in new funding for accessibility packages to improve access to cinemas, local communities and library materials as well as liveable housing design, leadership development and the new ABC Ramp Up website.”

The long-term strategy is supported by six key areas, which aim to remove barriers and expand opportunities for people with a disability and their carers through the support of:

• inclusive and accessible communities

• rights, protection, justice and legislation

• economic security

• personal and community support

• learning and skills, and

• health and wellbeing

For more information or to access a copy of the National Disability Strategy, including accessible formats, visit fahcsia.gov.au.

Australian of the Year Simon McKeon, Senator Jan McLucas, Professor Ron McCallum AO, together with Dr Rhonda Galbally, chair of the National People with Disabilities and Carer Council, celebrate the official launch of the National Disability Strategy in Melbourne.


In her first column for Link, young politician Kelly Vincent, who has cerebral palsy, describes her move from theatre to the political stage – and finds there are many similarities between the fields.

Not long after I began work as a parliamentarian, I sat with a dear friend of mine, musing over the events of the past few weeks, which had led to my sudden and unexpected “political baptism”.

The conversation was filled with joy and excitement, but also much nervousness, uncertainty and even pain, which struck me at the thought of my then-budding career as a playwright now snap-frozen into hiatus.

This friend, namely PJ Rose, the artistic director of No Strings Attached Theatre of Disability, smiled and attempted to console me by quoting [English romantic poet] Percy Shelley in saying: “Poets are the unrecognised legislators of the world”.

I will admit that, at the time, I largely dismissed this comment as a sweet but ultimately ineffective attempt to heal my wounds. However, as time has moved on, I begin to see that these words are filled with a considerable amount of truth.

When I think of the characteristics one is best armed with in order to be a “poet” (and I do use this term loosely, as I think these traits are optimal for most, if not all artists), the first that comes to my mind is: a keen sense of the world around us, and an equally keen sense of the potential one possesses as an individual to change that world.

opinion | kelly vincent

Poetic

Poets are the unrecognised legislators of the world.

justice


Yes, an aim of the poet is to bring beauty into the world, but it is not often a frivolous, purely sensory kind. More often than not, a poet’s intent is to offer an exposé on the world as they see it – for good and bad – and their art is the vehicle they use to do this.

Similarly, there will always be politicians who, for one reason or another, do not succeed in conveying the message or implementing the change the originally aim for. But, every day, I am becoming more and more sure that the people in these hallowed halls are, or at least were once, in here with hope in their hearts and a real, clear vision for the change they would affect.

Humility is also important for both roles. Those politicians, who can achieve things without making a big song and dance about it, are the ones who stay in a country’s consciousness. While the brash, big-mouthed politicians might be the controversy of the day, it is those who have the foresight to be quiet, work hard and acknowledge the help, support and wisdom of others in policy-making, who shine through the fog of history.

Similarly, while a tantrum-throwing artist is entertaining, the best of the best are content to let their work do the talking.

I don’t profess to be at this height of humility yet, but it is something I aim for in every piece of work I do – both in the Legislative Council and on the stage.

Lastly, art and politics both require a “thick skin”. In this age in which one is almost constantly bombarded with images of “success”– a university degree, a stable job, a stable family – I believe that it takes a considerable amount of bravery to follow one’s heart and to do a certain job or live a certain way because it fills our souls more than our bank accounts (and yes, this is mostly true of art).

It takes much less courage to walk in the footprints already laid down by another than to follow the path drawn in the lines on one’s own palm.

Likewise, in politics, we are often open to judgement and criticism – largely, as it should be, and it can often be difficult to balance one’s own unique vision and approach for the world with the influence or advice that one is given and the interest and will of the people.

Shelley indeed knew what he was talking about when he said: “Poets are the unrecognised legislators of the world”. Although, looking at these points, I wonder if perhaps we all are.

Kelly Vincent is the Dignity for Disability MLC

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in focus | epilepsy

Purple Day, the annual awareness day for epilepsy, was celebrated internationally on March 26. Two Australians shares their stories on living with the disorder.

Gabrielle Poustie Gabrielle Poustie, 45, from Shepparton, was just eight years old when she was diagnosed with epilepsy. Gabrielle has complex partial seizures.

Despite continuous medication and two surgeries − one in 2006 and another in 2007− Gabrielle has sadly been informed by her specialists that her seizures will never be completely under control. But, despite having to make major adjustments to her life, Gabrielle’s positive and

ambitious nature has led her to create a happy life for herself, selflessly donating her time to help others.

“Epilepsy has been with me for the majority of my life, so I have learned to adjust my activities,” Gabrielle says. “When I was young my activities were centred around the Girl Guide movement as sport was not high on my agenda due to a physical disability. I later became a leader in the movement. I have

done a great deal of volunteer work with the Blood Bank and service clubs.”

Gabrielle is extremely grateful to her family and close friends for their continuous help and understanding. “My family and friends have been extremely supportive, having lived through epilepsy with me. They never exclude me and are always ensuring that I am in a safe environment.”

Gabrielle stresses the importance of raising awareness of epilepsy and in particular seizure first-aid. “So many people don’t know how to react to a person having a seizure and this is very disappointing. Hopefully, Epilepsy Awareness Week and Purple Day will bring it out of the shadows and increase public understanding. I would like people to talk more about epilepsy, as they do about other medical issues, and not be afraid of the word or the people who have epilepsy.”

There is plenty of support available for those directly or indirectly affected by epilepsy. Gabrielle is a member of the Goulburn Valley Epilepsy Support Group, which meets each month, for a coffee and a chat. Gabrielle adds: “The Epilepsy Foundation of Victoria offers excellent support. It’s so good to know that Lisa from the foundation is only a phone call away whenever we need advice or assistance.”

Gabrielle intends to continue leading a happy, healthy life, while also helping others to do the same.

Sam CrawfordGraeme and Margaret Crawford from Camberwell in Victoria know only too well the difficulties and worries that accompany a diagnosis of epilepsy. Their son, Sam, was diagnosed with the disorder at the age of four.

As a young baby, Sam contracted a virus, causing severe acquired brain damage, which resulted in spasticity down his right side, severe sight impairment and, eventually, the onset

Epilepsy has been with me for the majority of my life, so I have learned to adjust.

epilepsyLiving with


Snapshot on epilepsy• Epilepsy is a brain disorder, which involves

repeated, spontaneous seizures of any type. Research suggests that about 4 per cent of the Australian population will develop epilepsy at some stage in their lives.

• The highest incidence occurs in children in the first year of life.

• Purple Day was founded in 2008 by then nine-year-old Cassidy Megan from Canada. It’s since achieved international recognition through the internet – in particular, social media – with many embracing her simple message: wear purple and spread the word about epilepsy!

The bureaucratic system on attending school with an

impairment imposed many hurdles.

of uncontrolled and debilitating epilepsy – extremely life-limiting effects for him to deal with. By the age of 12, Sam’s epilepsy had deteriorated to the extent that he was having between one and two seizures each day.

Despite facing so many challenges – including the exhaustion and interruptions caused by his seizures, his physical impairment and having limited eyesight – Sam successfully completed Year 12 at Balwyn High School.

Sam’s father, Graeme, says: “Sam received great support and encouragement from his school and his full-time integration aide, allowing him to attend school, like other children his age. However, there were many challenges. Teaching staff knew little about epilepsy, and so, I addressed all staff annually about what to expect should Sam have a seizure event. This helped allay their fears. The bureaucratic system on attending school with an impairment imposed many hurdles, which are not to be understated.”

After secondary school, Sam attended Swinburne TAFE and completed a three-year course in Work Education and another in Dynamic Website Design.

During the last 15 years, Sam has been cared for by a medical team, headed up by Professor MJ Cook and Associate Professor MA Murphy of St Vincent’s Hospital, who have worked tirelessly in trying to find some relief for him. Over the years, Sam has tried all available medications, including participating in clinical trials of new ones, along with undergoing grueling neurosurgery many times in order to improve his quality of life – though most have had little or no success.

Sam’s retired parents provide 24/7 care for him and are well aware of the restraint that his condition puts upon his life and all of those around him. Graeme says: “Sam’s condition, not to mention dealing with the recovery of each extensive surgery, has had huge impacts on our whole family. Despite

everyone working hard to ensure that he doesn’t miss out and that he gets about, Sam is somewhat imprisoned at home. His quality

of life is, therefore, very limited. Maintaining a close group of friends for him imposes more demands on us.”

Sam has had a long-term association with the Epilepsy Foundation and gained work experience there as part of his time at Swinburne TAFE. He has participated in the Superfits Programme for many years and enjoys the outings with the group. His longer-term aspirations are to be able to live a normal, independent life, free of epilepsy and the restrictions that imposes.

People with epilepsy or their families can call the Epilepsy Helpline on 1300 852 853 or visit epilepsyaustralia.net.


opinion | ken baker

Of the hundred or more reports on disability policy that have crossed my desk in the past decade, none surpasses the Productivity Commission’s draft report on Disability Care and Support in its scope, depth and significance.

I should also say that none surpasses it in terms of weight! The Productivity

Commission’s report runs to more than 800 pages. Fortunately, it is well-written and comes with an excellent 70-page overview.

One swallow does not a summer make, but the release of this seminal report is a milestone in the campaign for fundamental reform of the funding and provision of disability services around Australia.

On the last day of summer – the day of the report’s launch – I was at Parliament House in Canberra with colleagues from the National Disability and Carer Alliance, a coalition consisting of representatives of people with disability, family carers and disability service providers. We formed the Alliance to promote a National Disability Insurance Scheme (NDIS) and, subsequently, employed the former NSW Minister John Della Bosca to lead a national campaign.

On the morning of the report’s release,we were on tenterhooks. The campaign team had worked hard to prepare the ground among journalists and politicians, but we knew that much could go wrong. What if the Productivity Commission’s hard-headed economists, after their year-long inquiry, concluded that large-scale reform of the disability services system was not feasible and that patching up the system was a better option? What if the government or the Opposition refused to welcome the report? What if the media ignored it? Much to our relief, none of this happened.

Inevitably, there are details in the 800-page report that will raise questions and objections. But the Productivity Commission’s key message deserves loud acclamation: “The disability support ‘system’ overall is inequitable, underfunded, fragmented, and inefficient and gives people with a disability little choice... The central message of this draft report is that a real system for people with a disability is required − with much more and better-directed money, a national approach, and a shift in decision-making to people with a disability and their carers.”

Central to the proposed reform is the establishment of an NDIS, which would provide equitable access to the full range of long-term disability support services and equipment.

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oto: stock.xchng/bjearw

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A turning point in disability reform

Ken Baker, the chief executive of National Disability Services, gives his low-down on

the Productivity Commission’s draft report on Disability Care and Support.

The campaign for an NDIS has now entered a new phase.


‘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’

Ph

oto: stock.xchng/bjearw

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Nationally-consistent assessment would allocate individual support packages, based on people’s needs. People could choose their service provider, with assistance where necessary. They would also have the option to “cash out” their support package (subject to conditions) and manage it at the detailed level − self-directing their funding. An estimated 360,000 Australians would be allocated support packages under this scheme.

The NDIS would be governed by a new statutory authority and funded by the Australian Government. The Productivity Commission estimates that its proposed system would require a doubling of government funding from the current $6.2 billion to $12.5 billion.

The new scheme would potentially be trialled in one region in 2014, with implementation across Australia in stages from 2015 to 2018. A second much smaller scheme, the National Injury Insurance Scheme (NIIS)− covering about 20,000 people −would be established as a federated model of state-based, no-fault schemes, providing nationally-consistent lifetime care and support to all people newly-affected by major injury.

Politically, the sharp end of the NDIS proposal is, of course, the money. During a week in which the major political parties were warring about the proposed carbon tax and flood levy, a report recommending an additional $6.3 billion a year expenditure on disability support services could have added fuel to the fire.

But, to their credit, both the Government (Jenny Macklin, Jan McLucas and Bill Shorten) and the Opposition (Kevin Andrews and Mitch Fifield) welcomed the report. The Opposition was invited by the media to call the NDIS a “big new tax”, but refused to do so, stating: “People with disability aren’t focused on funding mechanisms, they just want things fixed.”

Disability policy rarely makes headlines, but all the major media networks covered the report’s release. Both national dailies, The Australian and The Financial Review, ran significant articles before and following the report’s release and editorialised favourably.

The Australian said:“Every now and again, a public policy issue emerges in which the social and economic arguments are so clear that it is hard to believe it is still being debated. This is the case with the disability insurance scheme that the Productivity Commission is recommending to the federal government.”

The campaign for an NDIS has now entered a new phase. In the Productivity Commission’s draft report we have something tangible and detailed to debate and promote.This will require maturity, energy and strategic skill from service providers, people with disability and family carers.

We need to debate the detail while continuing to communicate unityof the need for reform to the public and government. We need to raise much more awareness outside the disability sector. And we need to marshal evidence that demonstrates the cost of not establishing an NDIS −the lost productivity and the increased pressure on other service systems,such as Health.

Over coming months, the Productivity Commission will refine its proposals and deliver a final report to government, which will then respond. It is worth emphasising that the government is not obliged to accept any of the report’s recommendations.

That is why the NDIS campaign is so important. The National Disability and Carer Alliance is organising a National Congress on May 2 and 3 in Melbourne. It will be a great opportunity for service providers, people with disability and family carers from across Australia to gather and debatethe Productivity Commission’s draft report, consider its implications, put policy-makers under the spotlight and demand the large-scale change that we have long-awaited.

To register for the National Disability and Carer Congress, go to everyaustraliancounts.com.au/national-disability-and-carer-congress-2011/. To read the Productivity Commission’s draft report, go to pc.gov.au/projects/inquiry/disability-support/draft.


link | interesting jobs

zooMichael works for Taronga Zoo as an internal mail delivery courier and has proudly been part of the team for more than 20 years.

Michael’s role at Taronga Zoo has been designed especially for him. Th e idea of an internal mail courier was thought up by Michael and Sue Werner from Sydney Employment Development Service, a division of the Cerebral Palsy Alliance.

Michael performs many jobs for the zoo including, he says, “keeping the communication papers, mail delivery, letting the public know about the

animals and helping the keepers from time to time. I look after 18 diff erent divisions.”

Recently, Michael approached JobAccess to update some of the equipment he needs to undertake his specialist zoo role. (JobAccess is a free government service, supporting the employment of people with a disability, administered by WorkFocus group.) His old vehicle no longer met the job requirements

due to his cerebral palsy − the symptoms of which progress with age.

JobAccess was able to arrange funding through the Employment Assistance Fund to modify a golf cart with drive-by-wire technology, which allows the vehicle to come to a complete stop when Michael’s foot is removed from the accelerator. (Th e Fund can help with modifi cations to work vehicles that are used primarily to carry out the functions of the job, so that they are accessible to employees with a disability.)

Th e modifi cations meant that the controls in the new buggy have been moved and mounted on a pole in the centre of the fl oor of the cart, where Michael is easily able to reach them.

due to his cerebral palsy − the symptoms of which progress with age.

JobAccess was able to arrange funding through the Employment Assistance

As well as this, the head of the key has been enlarged and, due to the fact that the mechanism is so soft, Michael is able to start the vehicle and change gears by pushing the key with his knuckles − an important feature as Michael has limited hand function.

Michael was not able to lift and pull the fasteners on the mail tray of the existing cart, so a new tray has also been attached. Now, Michael can open the tray more easily via a magnetic type catch.

He explains: “Th e modifi cations to the new equipment make it easier for me. I can now get around and do my job more effi ciently.” Indeed!

Michael, who has cerebral palsy, is an

internal mail delivery courier for Taronga

Zoo. He recently had help with modifi cations

to his equipment to make his job easier.

It’s a

out there!

Th e modifi cations to the new equipment

make it easier for me.

Bedford – proud sponsor of Link Disability Magazine

advertorial | bedford

Bedford celebrates abilities of latest graduates

Led by Bedford in collaboration with the Department of Further Education, Employment, Science and Technology (DFEEST) and Community Centres SA, ‘Abilities for All’ is the only course of its kind in South Australia.

While 132 participants graduated in 2009, 2010 saw a record 180 participants in business and community services as a result of the program.

“From its inception in 2004, the ‘Abilities for All’ program has addressed the training needs of South Australian adults with disability or disadvantage who face challenges in search of better employment pathways,” Bedford Chief Executive Max Dyason said.

“The graduation ceremony was symbolic of a new beginning for more people in more sectors of the community than ever before.”

Participants graduated from three courses – Certifi cate I in Business, Certifi cate II in Business Customer Contact and Certifi cate II in Community Services - boasting a 90 percent or higher completion rate across all three.

Across the three courses, participants have the opportunity to undertake units ranging from Communication Behaviour Management and Advocating for Clients to occupational health and safety procedures, administration and offi ce skills.

“There are many people in the community who show great potential but for a variety of reasons have fallen between the cracks of the regular education system.” Mr Dyason said.

“’Abilities for All’ is addressing that community need and we’re proud to see it’s really working.”

“It’s a win-win for the participants and the business community.”

For further information on Bedford training courses please contact Paul Gaertner, Team Leader, Training and Education on 0434 187 430.

Photo: Lily Bozdarova, Lucas Bramley, Jazmin Bullen with the Hon Jack Snelling MP, Treasurer and Minister for Employment, Training and Further Education

In February 2011, an outstanding number of South Australians with disability or disadvantage entered the open workforce or went on to further study as graduates of Bedford’s renowned ‘Abilities for All’ program.


opinion | johnny mackay

Johnny Mackay believes training and activity programs for adults with disabilities and mental illnesses need to be more expansive.

In my work as a trainer, I am asked to review and sometimes design, training and activity programs for adults with disabilities and/or mental illness.

Part of educating trainers in Australia encompasses the concept of appropriate delivery (language, modal preferences, timing, environment, OH&S, special needs, and tools) and content (understand-ability, text usage, graphics, complexity, relevance, interest level, and engage-ability), but understanding this “appropriateness” is based on quality research and assessment of demographical data, relating to the proposed learners, not assumptions and opinions about them.

Time and time again, I experience programs, which have been designed on the basis of preconceptions that the participants, for whatever reasons, have very low IQ, poor concentration, behavioural issues, learning disorders, comprehension diffi culties and/or childlike tendencies, just to name a few.

Th e programs I talk about include making shapes out of food, coloured cardboard glued to coloured cardboard, making name tags (as if a person doesn’t know their own name!), making boxes out of boxes, clothes for toys, lollipops and masks to wear (presumably because our own faces aren’t interesting enough?), happy faces and teddy bear stickers.

Whilst it may be true that these activities can be fun for young children, why is it that meaningful outcomes are absent when the programs are considered for marginalised adults? Moreover, how is this contributing to diff using the stigma, which surrounds already disadvantaged groups?

Some years ago, after working as a production supervisor in a printing studio for the best part of two years

and working with a variety of wonderful people with intellectual disabilities,

I have become enlightened to the concept of appropriate challenge.

Like any living and growing entity, humans respond equally well to the correct level of stimulus. This must be a stimulus, which is neither too easy, nor too hard. When we engage in the correct amount of challenge, the result is

hypertrophy – growth.

Some of the tasks, which were asked of the employees in this professional business, may have been observed (from the proverbial “outside”) as deceptively simple

or insignifi cant, but every single one of them was paramount to the success of studio output. Each one

represented a recognised and signifi cant contribution.

As each employee would master a particular task, new challenges were trialled, so that continual improvement

and growth opportunities were created. Th is then fulfi lls a basic human need – to expand and grow. It also increases

No more child’s play

How is this contributing to diffusing the stigma, which surrounds already

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employee self-worth, job enjoyment, retention, workplace relations, it is good for the business, and ultimately, good for the community on the whole.

So, why are these training programs consistently childlike and void of outcomes, which provide feelings of signifi cant contribution in the lives of the participants, the recipients, the families and the extended community? Could it be trainer education? Organisational education? Community awareness? Lack of compassion? Could it be all of these things?

For my part, I not only endeavour to understand the people (and their individual capacities), who will participate in the courses I design or review, but to design these programs in a way that is meaningful to those participants. Best results are achieved if the programs are also entertaining, create opportunities for ongoing growth and progress, and provide a signifi cant outcome as perceived by the participants themselves. It should be designed from the perspective of, and if possible, in consultation with the proposed learners and it should never, ever, be childish or childlike.

I implore trainers, with similar opportunities, to think carefully about the needs of the people they are really designing for − to think clearly about the human need to expand and grow. Good training programs and activity courses can be powerful transitory opportunities for the people, who engage in them and, in particular, people in marginalised groups. It is us as trainers, the messengers of the modern world, who must be accountable for this important responsibility.

I am convinced that, to uphold this responsibility and serve “our” people best, we must use not only our experience and education in the work we do, but we must also use our hearts.

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

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Please Look After Mother by Kyung-sook Shin (Orion)

Th is novel centres on So-nyo, a wife and mother, who has lived a life of sacrifi ce and compromise. Having suff ered a stroke, which leaves her vulnerable and often confused, So-nyo is separated from her hubby as the doors close on a packed train. Her children and husband desperately follow every lead to fi nd her. Th e story is told from diff erent viewpoints – her husband and two of her children − as they

lash out at each then grow closer again, each confronting their indiff erence to So-nyo’s pain and loneliness.

� e Healing Code by Alex Loyd and Ben Johnson (Hodder & Stoughton)

In 2001, while trying to cure his wife of her long-term depression, Dr. Alex Loyd discovered how to activate a physical function, built into the body, which consistently removes the source of 95 per cent of all illness and disease. Consequently, the neuro-immune system takes over its job of healing whatever is wrong with the body. He also discovered that there is a Universal Healing Code that will

heal most issues for most people, whether they be physical, emotional and relational.

Social Enterprises At Oasis by Leo Bartlett

A new book on social enterprises at the Salvation Army’s Oasis Youth Support Network Centre for homeless young people has just been released. Full of stories, it explores some of the ideas behind Oasis’s social enterprise projects. Th e book is worthy reading for all social enterprises, social entrepreneurs and youth workers, supporting social projects

throughout Oz. Learn more about the social enterprises at Oasis and use its messages for your own activities. Order via email at [email protected] or check out the Facebook page, facebook.com/sesatoasis.

entertainment | reviews & more

OpenBritan 2011

Keen travellers to the UK can now order a copy of the updated 2011 edition of the OpenBritain guide, published by Tourism for All UK. Th e annual publication is supported by an associated website, openbritain.net. Th e new guide is packed with 400 pages of easy-to-use info including places to stay, where to go, where to eat, and getting there. It’s available to order at £9.99, plus £17.00 p&p to Australia, via tourismforall.org.uk.

All I Can Handle by Kim Stagliano (Skyhorse Publishing)

Th is comic (and sometimes heartbreaking) memoir follows the life of one woman, who “raises three autistic daughters, loses one at Disneyworld, stays married, has sex, bakes gluten-free, goes broke, and keeps her sense of humour”! American Kim Stagliano lays everything on the table − whether she’s going commando to rescue a daughter from a potentially embarrassing situation or accidentally stealing electric fans!

Nourishment by Melissa Binstock (HCI Books)

Th is tome follows a young American college student, who was diagnosed with fi ve disorders as she was growing up. Her struggle to live a “normal” life led to two hospitalisations, trips to eating disorder treatment centres and a virtual breakdown – all before she fi nished high school. Tourette syndrome made Melissa Binstock feel like a freak, dyslexia made her feel stupid, ADHD made it diffi cult for her to focus, OCD gave her the illusion of control, and anorexia helped her numb the feelings of

pain and isolation that plagued her. Her message has the potential to help thousands.

BOOKS


accessability.uts.edu.au

Th e University of Technology, Sydney, has put a hand up to be an innovator in disability-friendly learning with the launch of a new student website. Developed by students with disability for students with disability, the AccessAbility website is a positive community resource, which not only acknowledges, supports and inspires people with a disability studying on the campus, but also encourages them to be comfy within themselves. - Alyssa Gill

pulse.centrelink.gov.au

Centrelink’s Pulse is a community website for people, who receive a disability support pension. Here, you can fi nd out the latest news, views and things to do. Plus, share your stories and thoughts on important issues aff ecting people with a disability − and take part in online opinion polls.

disabilitystories.org.au

Disability: Our Stories is a free, multimedia, web-based resource about the perspectives of children with a disability, between the ages of 0 and 18, and their parents and carers. It was launched at Novita Children’s Services in November.

• Trapped was the only performance in the Adelaide Fringe festival said to be Auslan interpreted. Centred on the topic of asylum seekers, Trapped was devised and performed by Kym Mackenzie and Alirio Zavarce. It was presented by No Strings Attached Th eatre of Disability in association with Loose Canon Arts Services and the SA Migration Museum.

• Pay-TV has been showing Our Little Life, a reality TV series, starring married couple Craig and Becky Hennon, who both have dwarfi sm. Th e show follows their struggles raising their son, Charlie, who doesn’t have dwarfi sm. Compelling!

Museum exhibition on complex communication needs

Ayden is a 12-year-old boy with Leigh’s disease, which aff ects the central nervous system. Ayden has complex communication needs and communicates using alternative

WEB

GOSS

Reality TV series Britain’s Missing Top Model on ABC2 challenges beauty norms. All the contestants have a disability, such as being deaf or using a wheelchair. Interesting viewing! Th e series screens on Wednesdays at 8.30pm until April 6.

and augmentative forms of communication (commonly known as AAC).

He uses a PODD (Pragmatically Organised Dynamic Display Book) to communicate, pointing to symbols and words to create sentences.

Over the years, the fi eld of AAC has developed and expanded considerably. An organisation called AGOSCI was developed in 1981 to support and educate people, who have complex communication needs (CCN). Th is year, marks AGOSCI’s 30th year. To celebrate, a museum display is being held at the South Australian Museum, from May 3-30, as part of the AGOSCI conference, also in Adelaide.

Th e display aims to introduce the public to the fi eld. It will also provide the opportunity for people, who have or work with people with CCN, to reminisce over old devices and gasp in awe at the advances in technology!

Beauty on parade



entertainment | andrew hewitt

How did you fi rst get into drumming?I fi rst started playing drums when my parents got me a drum kit for Christmas in 1980. I was 10 years old! My parents thought it would be a good form of physical exercise for me and it developed into a major passion. Th irty years later, I am still doing it! Drums are the most physically challenging instrument anyone can learn to play − let alone a person with a disability…

[But] I have always been fairly positive about my

disability and tried to do new things even when people said, ‘No, you can’t – impossible’.

Drummer boyHence, the drumming. It gets frustrating sometimes when I’m stuck in the chair and can’t just go and do what I want to do. But, I don’t think I would be the person I am today if it wasn’t for me having CP.

How do you get around the restriction of your wheelchair with drumming?Biggest issue I’ve had so far is stages that aren’t wheelchair-accessible. Either I get on my crutches and climb up or have people lift the chair up on to the stage. Been dropped a few times!

What equipment do you use?I have two drum kits, which I use “live”, depending on the gig. I have just started using Roland V-Drums, which are the most disability-friendly drum kits on the market. Th e kit I am using is a Roland TD-12KX and it doesn’t have any fl oor stands for the snare drum or fl oor tom pads, which means with a few slight programming modifi cations, the drums can be made very wheelchair-friendly. I also have a DW PDP acoustic drum kit with Zildjian cymbals. I am very lucky to have endorsement deals with DW Drums, Zildjian cymbals and Vic Firth drumsticks. I am also an offi cial Roland artist.

Sydney drummer Andrew Hewitt

hasn’t let cerebral palsy restrict him from pursuing his

musical passion. Link spoke to him.

I don’t think I would be the person I am today if it

wasn’t for me having CP.

Any career highlights?Performing onstage at Australia’s Ultimate Drummers Weekend in 2009 with US drumming legend Dom Famularo and one of his students, Mike Mignogna, also from the US. Mike has CP similar to myself − and the three of us put together a performance that received a huge standing ovation from an auditorium of 500+ people.

Th e Roland V-Drum Festival in Sydney last year was also awesome. After I did my clinic, I was invited to share the stage with drummers Terapai Richmond (Th e Whitlams/Delta Goodrem/Guy Sebastian), Karl Lewis (Savage Garden), Lucius Borich (COG), Mal Green (Split Enz), Chris Whitten (Dire Straits), and Michael Schack from Germany in an all-star jam.

What do you think other people with a disability could get out of drumming?One thing I have noticed with the drumming workshops I do is that no matter how severe the disability is, put a drumstick in a person’s hand and they know what to do. I feel if I can give one person in a group a little hope, my job is done!

For more on Hewitt, visit www.drummerstix.com.au.

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Telstra is proud to sponsor Link Breakthroughs.

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AP.

Telstra is proud to be a corporate leader in serving customers with a disability and addressing accessibility issues, including for our staff.

On 3 December 2010 – International Day of People with Disability - Telstra cemented its ongoing commitment with the launch of our fi fth Disability Action Plan 2010-2012. Telstra’s core mission is to use technology to improve the way Australians live and work. Accessible telecommunications is critical to enabling people with a disability to participate fully at work and in the community.

Recognising the benefi ts that modern information and communications technologies bring to people with disability, this fi fth Disability Action Plan details our commitment across the three key areas of our Diversity and Inclusion framework: our customers, our communities and our people.

• For our customers – to provide affordable, innovative and accessible products and services which improve the quality of life for Telstra customers with a disability and their carers.

• For our communities – to support and create opportunities for people with a disability and their carers to participate within our community,

particularly through the use of our information, communication and technology capabilities.

• For our people – to improve Telstra’s attraction, recruitment, engagement and retention of people with a disability and their carers.

The Disability Action Plan will also help fulfi l the valid expectation of our staff and shareholders that we continue striving to be a good corporate citizen that makes a positive contribution to the wellbeing and vitality of the community.

Commenting on the launch of Telstra’s fi fth Disability Action Plan, DR Rhonda Galbally AO, a well known disability activist who Chairs the National People with Disability and Carer Council said: ‘That’s why Telstra’s fi fth Disability Action Plan is so important. Now more than ever, our nation needs corporate champions like Telstra to show what can be achieved when people with a disability are given the support they need to make the most of the abilities they possess.

There is no doubt that next generation technologies like Telstra’s Next G and Next IP networks have the potential to transform the personal and professional lives of thousands of Australians with a disability.

Telstra’s Fifth Disability Action Plan

® Registered trade mark of Telstra Corporation Limited, ABN 33 051 775 556.

‘I congratulate Telstra for

its ongoing leadership.’

- Dr Rhonda Galbally AO

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breakthroughs

US: Electrode therapy treats severe OCDThe use of brain surgery to treat psychiatric disorders has long been controversial, but new technologies are emerging that can help people with severe illnesses, scientists say.

Michael Okun, a neurologist at the University of Florida, was part of a panel at the annual American Association for the Advancement of Science conference, describing new progress and setbacks in treating Parkinson’s disease, obsessive compulsive disorder (OCD) and Tourette’s syndrome.

The technique for OCD, approved in 2009 by the US Food and Drug Administration for extreme cases, involves the insertion of a thin electrode deep in the brain. The electrical current has been shown to reduce OCD symptoms by about 25 percent in some patients.

Okun, who has also been working with people with Tourette’s syndrome, said the world is now in a “bionic age”, with about 70,000 people currently walking around with deep brain stimulation devices for various aims. However, he warns that the technology must be coupled with therapy and rehabilitation. “This is true of all DBS [deep brain stimulation] therapies. It is not a light switch.” - Kerry Sheridan

Artificial retina helps some who are blind

For two decades, Eric Selby had been completely blind and dependent on a guide dog to get around. But, after having an artificial retina put into his right eye, he can detect ordinary things, such as the kerb and footpath, when he’s walking outside.

“It’s basically flashes of light that you have to translate in your brain, but it’s amazing I can see anything at all,” says Selby, a retired engineer.

More than a year ago, the 68-year-old had an artificial implant called the Argus II, made by US-based company Second Sight, surgically inserted into his right eye. And, Dutch regulators are now deciding upon the company’s request to market the device in the European Union. If green-lighted, it would be the first artificial retina available for sale.

The implant works with a tiny video camera and transmitter in a pair of glasses and a small wireless computer. Patients need to learn how to interpret the flashes of light emitted. For instance, they might decode three bright dots as the three points of a triangle.

The implant is intended only for people with a specific type of inherited retina problem, who still have some functional cells. They must have previously been able to see and their optic nerve must be working. − Maria Cheng

Mind-moved bionic arm on display in US

A bionic prosthetic arm, which is controlled by its operator’s thoughts and even restores some skin sensation to the amputee, has been on display at the annual conference of the American Association for the Advancement of Science.

More than 50 amputees worldwide − many of them military veterans, whose limbs were lost in combat − have received such devices since they were first developed by US doctor Todd Kuiken in 2002. The arm uses technology called Targeted Muscle Reinervation (TMR), which works by rerouting brain signals from nerves that were severed in the injury to muscles that are working and intact.

A series of other efforts to test and improve on these mind-reading robotics, known as brain-computer interfaces, were also showcased at the conference. Among them, how researchers can now place computer chips on the brain’s surface to interpret neural activity, potentially allowing spinal cord injury patients to control a range of devices, from computer games to prosthetics.

But while the technology may seem stunning, it is anything but easy work for the patients. So now researchers are figuring out how to hook up a machine to interpret a user’s brain signals and read their intent. By reading or speaking commands out loud, the technology can learn to sift through the fray - making multitasking a reality, while, at the same time, allowing users to catch a break!

46 linkonline.com.au April 2011 — Vol 20/1April 2011 — Vol 20/1

opinion | peter coulter

April 2011 — Vol 20/146 linkonline.com.au

that pongLove

Why do we think we need to make things − and ourselves − smell like anything but what we really are?

Admittedly, sometimes we do not smell altogether nice, but the obsession with aesthetics is irrational and dangerous.

Air fresheners contain chemicals, which are not natural, and they can impact on our lungs and other bits and pieces in an unnatural way. If we keep clean and keep our homes clean, neither we or our abode will be unpleasant or dirty and artifi cial sweeteners can be left in the stores.

According to a report on MSN Health & Fitness, sales of air fresheners −

especially plug-ins −have soared in recent years. But, at the same time,

so have the complaints from people exposed to the scents in

Synthetic scents are not necessary and can, in fact, be problematic, writes Peter Coulter.

Admittedly, sometimes we do not smell altogether nice.

their homes, workplaces, public places and at the abodes of family and friends.

University of Washington professor Anne Steinemann conducted two studies about air fresheners – each time, asking about 1000 people if they suff ered from any adverse health eff ects, such as respiratory problems

and headaches, after breathing them in.

Th e results found that these synthetic scents can be not so pleasant for

some. In the fi rst study, more than 17 percent of the general population and 29 percent of those with asthma said they experienced health problems following such exposure. In the second study, reported problems were 20 percent and 37 percent respectively.

Research on mice further props up Steinemann’s fi ndings. A 2007 study in Toxicological Sciences found that volatile organic compounds − a common component of air fresheners – also caused respiratory problems in laboratory mice.

So there ya have it: go ahead and pong, you may be healthier for it!


what’s on

WHO – World Health Day7 April 2011Worldwidewww.who.int/world-health-day/en/

2011 Disability Support Worker Awards (WA)9 April 2011Burswood Entertainment Complex, [email protected] or (08) 9245 6575 for tickets

Oska Bright 2011 call for entries5th International Festival of Short Films made by people with learning disabilities.Entries close 30 April [email protected]/main-events/

DrawtismTM – Play PictionaryTM for AutismHost a game of PictionaryTM at home or work1 May 2011, through entire monthwww.drawtism.com.au

National Disability and Carers Congress2-3 May 2011Ethihad Stadium, Melbournehttp://www.nds.org.au/events/1290993506

The 2nd Annual National Disability Summit 20114-5 May 2011Melbourne Cricket Ground, VICwww.iir.com.au/conferences/healthcare/national-disability-summit/registration

Kids Camps Inc21-26 April for ages 8-13Baptist Youth Camp, Busselton, WA, or28 April-3 May for ages 14-18DCP Campsite, Port Kennedywww.kidscamps.org.au/schedule.php

Fashion parade, presented by Hahndorf AuxiliaryFundraising for Novita Children’s Services3 May 2011, 10am - 12 noonSt Paul’s Lutheran Church Hall, Hahndorf, South AustraliaContact Lorrain on (08) 8388 7376

Australian Network on Disability Annual Conference10-11 May 2011Dockside Conference Centre, Cockle Bay, Sydneyhttp://www.and.org.au/content/view/418/1/

Aged Care Association Australia NSW Congress 201119-20 May 2011Sheraton On The Park, Sydneywww.acaansw.com.au

Australia’s Biggest Morning Tea - Cancer Council26 May 2011Find a morning tea - www.biggestmorningtea.com.au/Findamorningtea/tabid/55/Default.aspxwww.biggestmorningtea.com.au/

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

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

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

NDS Employment Forum 201122-23 August 2011Hilton, SydneyEnquires to Julie [email protected],au or 02 9256 3115

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

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

The “Lifestand Wheelchair” is for people with a spinal injury. It is a manual wheelchair but also by pushing levers on the chair inbuilt hydraulic lifters lift you to a standing position.

Safety is covered as your chest is locked by adjustable arm-rests and knee braces lock your knees. Capacity is 120 kilograms and the chair weighs 23 kilograms and is in as new condition.

Replacement cost is around $9000 and I will sell for $4200 Phone 0414 286 333

Lifestand Wheelchair


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