Tom Mullen's - Spinal Injuries Association

May to June 2010A voice for equity, inclusiveness and empowermentOn the waterBoating, fishing, surfing --you can do it allCelebrating in styleThe Governor comes to our50th birthday partyFully engagedHow member networksare changing theircommunitiesAlso in this issue:Managing Transverse MyelitisMedical Aids Subsidy SchemeCommunity championsThe Association in the 1980sPaint mea pictureTom Mullen’s colourfullifeOFFICIAL PUBLICATION OF THE SPINAL INJURIES ASSOCIATION

May to June 2010in thiseditionOn the water 4Ask the expert 7News update: MASS 9Member profile:Tom Mullen 10Go on safari: part 2 12Celebrating50 years: 1980s 17Member networks 20the advocate is the officialpublication of the SpinalInjuries Associationto contactVanessa Mannix CoppardPublications CoordinatorPO Box 5651, West End QLD 4101Ph: (07) 3391 2044Fax: (07) 3391 2088theadvocate@spinal.com.auto contactthe AssociationBrisbanePO Box 5651, West End 4101Ph: (07) 3391 2044 or 1800 810 513Fax: (07) 3391 2088enquiries@spinal.com.auTownsvillePO Box 618 BC, Aitkenvale 4814Ph: (07) 4755 1755 or 1800 024 422Fax: (07) 4723 8677nqenquiries@spinal.com.auwww.spinal.com.auThe views expressed in the advocatedo not necessarily reflect the views ofthe Spinal Injuries Association.2 May to June 2010FROM THECHAIRIn March the Association marked its50th anniversary in style.We enjoyed a visit from our patron, Her Excellency, Ms Penelope WensleyAO, Governor of Queensland, on 9 March – the exact date the Associationmet for the first time in 1960 – who joined honorary life members and pastand present board members for morning tea. It was a wonderful opportunityto reminisce about the Association’s remarkable achievements over thepast half century and to remember that, through the years, our core purpose– to support members to live fulfilled lives and focus on their abilities – hasremained constant. I was particularly struck by Her Excellency’s recollectionof Dr Noble’s speech at that inaugural meeting where he commented thatthe Association’s first president, George Reader, was ‘paralysed fromthe neck down, but not the neck up’. It’s a simple statement but one thatreminds us of the challenges many of us face each day in being valued asparticipating and contributing members of our communities.Work will soon commence on a review of the Association’s constitutionbecause it is at least five years since it had a full review. We will not bemaking any significant changes,but will be making sure it conforms to thelatest incorporated Associations Act and that the language used is ‘modern’.Following our workshop in February we identified that the managementcommittee (which is the current terminology used in the constitution) reallydoes act as a board of directors and the constitution can be worded toreflect this.Finally, Griffith University will soon conduct a member survey on behalf ofthe Association. This survey is not to measure member satisfaction withthe Association but to determine members’ needs and wants. We will thenreview our service delivery to make sure it fully meets member needs.David Riley, PresidentRespite CareFor people who have a physicaldisability and who use a wheelchair• Experienced staff• 24hr Attendant Care• Full Board• Purpose Built HouseBACKFor more info contact:The CoordinatorBackstop HouseMundin Street,Petrie, BrisbaneTel: (07) 3285 6695Fax: (07) 3285 4955“The Support you’ve been looking for”ADVERTISEMENT

INS ANDOUTSIt may only be May but it is clearfrom the media coverage thatthe federal election campaign isalready well underway.With this is mind, I recentlyattended a meeting of about45 people representingdisability organisations, carerorganisations, advocacy groupsand disability service providersfrom all around Australia withthe aim of developing a strongcampaign we can drive together.Our aim is twofold: firstly, toensure disability is a strongcampaign issue for all the majorparties, and secondly, to continueto push for a National DisabilityInsurance Scheme regardlessof who wins government. I hopeto share more details of ourcampaign with you as they arefinalised but our message will beone based around core prioritiessuch as entitlement to supportsand services; portability; and therights of people to make theirown choices. We will need yoursupport to ensure that politicianshear our message loud and clear.At the state political level,Disability Services Minister,Annastacia Palaszczuk, will soonbe holding 19 forums throughoutQueensland to discuss herdepartment’s 10-year plan for thedisability sector. The forums aretentatively scheduled for Juneuntil September -- we’ll bringyou dates and locations whenwe have them. I encourage youto attend and share your ownknowledge and insight of whateveryday life is like for peoplewith a spinal cord injury.MARK HENLEYCEOMarch saw the Queensland launchof the new Australian Charter ofHealthcare Rights. This Charteris significant because it outlinesthe basic rights that patients andconsumers are entitled to receivewhen accessing healthcare servicesthroughout Australia. These rightscentre on issues such as access,safety, respect, participation,communication and privacy.“We will need your supportto ensure that politicianshear our message loudand clear.”We applaud this initiative but believeits success will depend upon how itis rolled out by Queensland Health– we will be carefully monitoringits progress. In the meantime, weencourage you to send us anyfeedback (enquiries@spinal.com.auor 07 3391 2044), particularly as theAssociation’s Executive Manager,Client Services, Frances Porter,has been invited to participate inthe Queensland Health’s DisabilityAdvisory group.Also in March, our NQ Manager,Cathy Lengyel, and I enjoyed a visitto the Mackay and District SpinalInjuries Association. Our meetingwith staff and members was aproductive one focused on exploringopportunities to work together to meetcommon goals.Our SEAT at School program,which shares safety messages withprimary and secondary studentsthroughout Queensland, continuesto be a huge source of pride for theAssociation. The program’s successdepends on the fantastic presenterswho so willingly give their time andshare their stories with thousandsof children every year. Two ofthese presenters, Wayne Leo andRobert Spencer, recently celebratedmilestones of presenting to their250,000 th and 100,000 th studentsrespectively. Congratulations Wayneand Robert, your achievements aretruly inspiring.Have you registered yet?Australia needs a no-fault insurancescheme for everyone who has, oracquires, a significant disability.Ensure the National DisabilityInsurance Scheme (NDIS) becomesa reality by making your voiceheard. Register your interest in theProductivity Commission’s inquiryinto the NDIS at www.pc.gov.au/projects/inquiry/disability-support.Find out more about the NDIS, andhow you can show your support, atwww.ndis.org.au.May to June 2010 3

FEATURE STORYSport and Leisure’s boatOn the waterDon’t let your injury or illness rule out water-based activities. Lots of options exist andthe advocate checked some out.Fisherman’s friendAssociation board member andmember network facilitator, ScottStidson, loves to fish and, withsome specialised equipment –and great mates – he’s able tocontinue enjoying the sport whilein a wheelchair and with limiteduse of his hands.Prior to the 1986 motorbike accidentthat left him with a spinalcord injury, Scott, who lives inthe Burdekin, spent most weekendsand holidays fishing withmates in his tinnies.“I love the smell of the salt waterand the feel of being on a boatout on the water, catching fishand mud crabs,” he says.But for more than 10 yearsfollowing his accident, Scott’slove of fishing was frustrated byboats that were inaccessible forhis wheelchair.“Then I saw a pontoon boat thata company in Townsville was usingfor tours,” Scott says.“I went out for my first boat trip inyears; it was a fantastic feeling becausefishing was honestly somethingI never thought I would be ableto do again.”Scott and his wife Lisa purchased apontoon boat of their own and modifiedit so a ramp was fitted to slideunder the deck of the boat, making itaccessible for Scott’s wheelchair.He then imported an electric fishingrod from America (he says these arenow available in Australia) and wasall set to continue his dream of landinga big barramundi.Scott advises other members interestedin modified pontoon boatsto ‘do their homework’ but not beintimidated by the relatively minorchanges needed to make the vesselsaccessible. He points out thatthe most important tool of all is agood friend.“I’m able to do it because of a reallygood mate. He baits the line, throwsthe line out,” he says.“All of us with quadriplegia who fishcan only do it because of a mate,a family member, a friend. They’remore important than the boat oranything else.”Accessible boatingYou can enjoy a day out onthe water without buying yourown boat. Leisure Accessible(leisureaccessible@iprimus.com.au;07 4773 4238) in Townsville helpspeople with disabilities to participatein many recreational activities, withan emphasis on boating and fishing.This is the company that took Scottout on his first boating trip after hisaccident.Sport and Leisure forthe Handicapped (www.sportandleisure.com.au; 07 54931998) is based on the SunshineCoast but provides services to manyorganisations between the GoldCoast and Hervey Bay. The grouphas just acquired a large wheelchairaccessible boat. Sports and Leisuredo not charge a fee, just a donationto cover costs.Sailors with a Disability (SWD)are committed to changing society’sperceptions of people with adisability and, says co-founder David4 May to June 2010

Scott Stidson and his boatPescud, is more interested in whatpeople can do, rather than what theycan’t. The Gold Coast post poliogroup went sailing with SWD lastJuly and had a great time.“Most of us have never had thisopportunity before, to spend a dayexploring our local waterways, andlearn the ropes of sailing,” said LynGlover, the group’s convener.“As we all have various side effectsfrom polio, which can be quitedebilitating, this is a great way offorgetting our ailments for a day.”Gold Coast Post Polio group member Val Fabianand her daughter Kerry Everson on the SWD trip.www.sailorswithdisabilities.com.Let’s go surfing nowIt’s the opportunity to feel freethat attracts many people with adisability to join the Disabled Surfers– although, for others, the motivationis much simpler.“Some people just want to sit onthe beach, and that’s ok,” says thegroup’s Gold Coast coordinator,and Association member, StevePickering.“Whether you were a surfer beforeyour injury or you’ve never been, itdoesn’t matter,” Steve says.“The water is a great equaliser.”Steve, who was a trawler fishermanbefore sustaining quadraplegia in afall, says the ocean has cleansingproperties for many people.“Let’s face it, when you’re in theocean, you’re not worried about yourtax return,” he says.People participating in DisabledSurfers events don’t actually ‘surf’ inthe usual manner. They lie on a softsurfboard, often with an able-bodiedhelper, who holds them securelyin place, as they float over brokenwater. A line of volunteers from thesand out to the ocean means the‘surfer’ is monitored, supported –and cheered on – every inch of thejourney. Steve is almost lost forwords when asked to explain howthe experience affects participants.“They’re overwhelmed. You seepeople change, they act differently.They become confident, relaxed – itbrings them out of their shell. “The 14 branches of DisabledSurfers (including one in NewZealand) are run by volunteers (“wecall it surfers helping surfers”, saysSteve) and hold four or five eventsa year. Anyone can come along andMay to June 2010 5

ON THE WATEROn the watercontinuedeach group usually numbers about30 to 40 surfers whose disabilitiesrange from relatively minor to peoplewith a spinal cord injury who use aventilator to breathe.“It means having their breathingapparatus disconnected and oxygendelivered manually by a nursewho walks alongside the ‘surfer’,”explains Steve.“They’re tough people; you’ve neverseen courage like they have.”Steve says that everyone atDisabled Surfers is driven by a‘safety first’ approach and the groupis proud to be incident-free after25 years. More information can befound at:www.surfershelpingsurfers.com.On the beachJust getting onto the sand can bea challenge for people using awheelchair.The Gold Coast City Council isworking hard to break down thebarriers that stop people withmobility issues from enjoyingthe beach like everyone else. InFebruary, the Council trialled twodifferent styles of beach mattingat the Southport BroadwaterParklands. While public feedback onthe concept was generally positive,some risks were identified thatmeant the matting was unsuitablefor permanent use. Instead,the Council is putting in place apermanent accessible pathwaywhich will include an area for peoplewho use wheelchairs to sit andenjoy the sunshine. The Council willalso soon offer beach wheelchairsfor loan at various Gold Coastbeaches.Steve goes surfing with the help of a volunteer6 May to June 2010

Concern: Constipation andurinary retention are commoncomplications of TM.It is important that you monitoryour bowel and bladder,regardless of the degree ofseverity.Management: Make sure youeat fibre-rich foods or take a fibresupplement to maintain a healthybowel. Fluid intake is important,so drink plenty of water to helpyou feel more comfortable.Rare illness changes livesWhat started as a three-week flu for Ian Hawkinsbecame a serious health problem, and led to himsustaining paraplegia.In 1993, Ian was a fit and healthy 54-year-old whowas still working and leading an active life.He had never heard of the disease that led tohim having to use a wheelchair, until he becameparalysed from the chest down, and was eventuallydiagnosed with the condition, Transverse Myelitis(TM).“The original diagnosis was Gillian Barre Syndromeand I was admitted into a neurology ward. However,after displaying symptoms that didn’t match up withthat Syndrome, the Registrar and Director of theSpinal Injuries Unit were called in,” Ian said.“When I was shifted into the Unit I was injected withsteroids, but it was too late for them to take effect.I suffered spinal shock, which lasted about sixweeks, and had a profound effect on my ability toactively participate in the rehabilitation program.”The Spinal Injuries Association isthe national body for people withtransverse myelitis in Australia andcan help connect people living withthe condition with others in theirregion, for support and the benefits ofnetworking with others who also haveTM.The Association is affiliated with theUS organisation, the TransverseMyelitis Association, which has agreat website full of information andresources www.myelitis.org. You canalso find more information on TMon the Association’s website www.spinal.com.au or by calling T: 07 33912044 (Brisbane) or 07 4755 1755(Townsville).Is there a topic you would likecovered in Ask the Expert?Send your questions or ideas totheadvocate@spinal.com.au or callT: 07 3391 2044.Have you been involved with the completion ofan Enduring Power of Attorney or an AdvanceHealth Directive?The School of Social Work and Human Servicesat the University of Queensland is looking forparticipants for a project that aims to explore anyissues associated with Queensland’s enduringpowers of attorney (EPA) and advance healthdirective (AHD) forms and suggest improvementsconcerning their usability and effectiveness for thepeople who use them.Researchers are looking for people who havecompleted an EPA or an AHD in the last two yearsor have been appointed an attorney under an EPAin the last two years to participate in interviewsor focus groups. They are keen to hear aboutyour experiences with the forms and give you theopportunity to say what you think of the forms, andsuggest any improvements.If you are interested, or require further details,please contact Carlie Rocco on 3346 7314 or email:c.rocco@uq.edu.auOn Transverse Myelitis Day (17 May) membersof the Spinal Injuries Association and medicalprofessionals will meet at the organisation’sWoolloongabba office to enjoy a two-hour livevideo conference with the USA TransverseMyelitis Association (TMA) President Sandford(Sandy) Siegel, and Dr Benjamin Greenberg, theTransverse Myelitis And Neuromyelitis OpticaProgram Director at the University of Texas.Sandy established the TMA in 1994 shortly after hiswife, Pauline, was diagnosed with the illness. HisAssociation now has 7,800 members across morethan 80 countries.Ian says much has changed since he firstcontracted the disease. “When I was firstdiagnosed, there was only one line about TM inthe medical textbooks. Now it’s well documented inmedical journals.”SAVE!HELP US SAVEPAPER AND COSTS!If you would prefer to receive your copy of the advocate via email – andhelp us reduce our costs and help the environment – please email us atvmannixcoppard@spinal.com.au telling us your full name and address.8 May to June 2010

NEWS UPDATESMore on MASSThe Medical Aids Subsidy Scheme(MASS) is a Queensland Healthscheme which provides access tosubsidy funding for the provision ofMASS-endorsed aids and equipmentto eligible Queensland residents withpermanent and stabilised conditionsor disabilities.What you need to know:MASS provides one replacementcushion cover a year and a sparecover can be requested when thecushion is ordered. MASS will replacefoam cushions once per year.Power wheelchairs that are usedon the footpath or road need to beregistered as a motorised wheelchairaccording to Queensland Transport.Contact Queensland Transport on 1323 80 or see their website for moredetails.Whilst MASS has a Standing OfferArrangement (SOA) for mobilityequipment and hoists, if none ofthese items are appropriate you canapply for an item outside of the SOA.MASS will service equipmentregularly i.e. power wheelchairs andhoists. They just require a phone callfrom you to organise a suitable time.Whilst MASS has a subsidyceiling limit for different aids, someaccessories and modifications canalso be subsidised on top of thisi.e. height adjustable armrests,specialised backrests etc.MASS retains ownership of aidsand equipment when MASS hascontributed more than fifty per centtowards the cost of the item. If theapplicant has contributed more thanfifty per cent towards the cost of theitem as a co-payment, the applicantmay accept or reject MASS’s offerfor ownership. i.e. Retain ownershipof the item and be responsible forthe cost of ongoing maintenance andrepairs, or agree that MASS retainsownership of the item to MASSwhereby the costs of ongoing repairs(except large tyres and tubes formanual wheelchairs) will be coveredby MASS.You have the choice of local repairerswho you can use. You need to callMASS to make them aware of repairneeds and where possible providethe plaque number of the item to berepaired.MaintenanceIf your equipment requires repair ormaintenance, phone MASS on thefollowing numbers:South/West Queensland:(07) 3136 3636North Queensland:(07) 4775 8000 for equipment anddaily living aids enquiriesNorth Queensland:(07) 4050 3500 for continence aidsenquiriesFeedbackIf you would like to provide feedbackto MASS regarding their equipment,repairers and the quality of therepairs, suppliers or their service youcan do so by downloading a feedbackform from their website (www.health.qld.gov.au/mass), writing a letter orsimply by giving them a call.Temporary subsidy increasesMASS has increased subsidies forsome wheelchair components andaccessories, as well as continenceand communication aids. Check ourwebsite www.spinal.com.au for moredetails.Easier access to onlineservicesAustralians with disabilities willsoon find it easier to accessgovernment information online.Minister for Finance andDeregulation Lindsay Tannerand Parliamentary Secretary forDisabilities Bill Shorten said theRudd Government has endorsednew website accessibility standards,the Web Content AccessibilityGuidelines (WCAG) 2.0.“This is an important step inmaking democracy more open,accessible and accountable for allAustralians,” Lindsay Tanner said.The new standard replacesWCAG 1.0, a mandatedrequirement for agenciessince 2000. Mr Tanner said thestandards contained in WCAG 2.0were in line with internationallyrecognised best-practice andstipulated that all governmentwebsites adhere to these newstandards by 2015.Mr Shorten said that unequalaccess to information wouldreinforce the second class statusof people with disability withinAustralia.“People with disability still facetoo many barriers that stop themparticipating in work, educationand other areas,” Mr Shorten said.The Rudd Government isdeveloping a National TransitionStrategy for the move to WCAG2.0 which will form part of theNational Disability Strategy to bereleased later this year.Information about the guidelinesand upcoming National TransitionStrategy will be made available onthe Web Publishing Guide: www.webpublishing.agimo.gov.au.May to June 2010 9

MEMBER PROFILEMEMBER PROFILEPaint me a pictureTom Mullen sets no limits on his colourful life full ofpainting, art, music, friends and animals.In 1982, Tom Mullen had it all.At 25, he was doing a trade,loved spending time fishingin his tinnie and was about toget married. Then everythingchanged. On his buck’s night,an accident on his motorbike(‘a dirty little 250’) left Tomwith quadriplegia and saw himspend the next 10 monthsin the Princess AlexandraHospital’s Spinal Injuries Unit.“It’s funny, my missus had keptsaying ‘don’t ride that bike,don’t even take it down the roadto your mate’s place’. It’s likeshe knew something.”Strapped to a hospital bed, hishead held in place by weights,Tom considered suicide.“I thought about it for months,”he admits.“After a while I started to notice thepeople around me. I thought ‘stuff it– if they’re all having a go, me too.’“Then I heard of a few people whowere working, still earning a quid. Ithought, ‘oh well, I can do that too’.”Tom’s relationship broke down notlong after he left hospital and for thenext seven years, he lived in nursinghomes, first in Mt Gravatt and thenin Beenleigh. Back then, there werefew other options for people withspinal cord injuries. Even then,Tom’s positive outlook saw himovercome what could have beenseen as a dire situation.“It wasn’t bad, we had male nursesand they were young, blokey guys,”he said.“They’d bring in a six pack after theirshift and spend some time with me.“At Beenleigh, they were countryboys and they’d take us down tothe pub at night. We’d stay out till2 or 3am and get a serve from thematron when we got back.”Leaving the nursing home, Tommoved into his current RedlandBay home, first with a friend andthen by himself. Living by hismotto of focusing on what can bedone, rather than what can’t, Tomworked hard to be independent. Atthe shops, he’d balance a basketof groceries on his lap, askingfellow shoppers to throw items in.His house, he says, ‘had stickseverywhere.’“For the powerpoints,” he explains.“And I had a stick with a hook on itto get things out of the freezer anda little ramp to slide plates into themicrowave.10 May to June 2010

Tom and dog RubyTom with partner Lyn and her daughter Michelle“It comes in handy being creative.”Tom is certainly that. He paintedone of last year’s Spinal InjuriesAssociation Christmas cards, andalso does ‘heaps of landscapes’ aswell as abstract work that he saysexpresses his feelings. While he onlypaints a couple of times a month(“I think that’s what keeps it fresh”),Tom says he’s ‘always sketchingsomething up’.His work is very detailed. A sketch ofa motorbike included every spoke onevery wheel.“The last thing you want is a realbiker to look at it and think you’vetaken a short cut,” he says.“I don’t take shortcuts.”Tom looks a bit like a biker himselfbut is a softly-spoken animal loverwho advises newly injured membersto ‘get in touch with their emotions’.He’s what you might describe as acharacter – full of good stories, easyto talk to, always busy with variousinterests and plenty of friends, manyof whom are musicians. He tries toget to as many of their gigs as hecan. “We try to be a bit of a mobilecrowd. You’ve always got to helpyour mates out.” Tom himself playsharmonica, and says he picked uphis talent for playing from his mumand dad.“If you think youcan do it, youprobably can.”“My parents loved music. They’dhave their friends over and they’dall be listening to rock and roll anddancing. Us kids used to get pillowsand sleep under the kitchen table,listening to it. They were greattimes.”Tom’s main artistic outlet thesedays is making bar furniture with hispartner Lyn who he says does the‘muscle work’.“There’s nothing like seeing a coat ofpolish going on finished furniture – itbrings it to life.”Tom and Lyn have been togetherseven years and live with her twochildren, as well as a menagerie ofpets including Australian Shepherd,Ruby, a tank full of fish and a prettyGouldian finch. Days are busy, spentwalking Ruby, throwing a few crabpots into the Bay, catching up withfriends and thinking up new ideasfor projects. Tom’s a man in constantmotion who doesn’t believe in settinglimits on what he can achieve in bothhis art and his life.He puts it simply: “If you think youcan do it, you probably can”.Would you like to be profiled inthe advocate? Please emailvmannixcoppard@spinal.com.au orcall 07 3391 2044.ADVERTISEMENT

TRAVELgo on SAFARIIn the March/April issue of the advocate, we brought you the story of Sue and Ian Reeves whowent on a safari with Endeavour Safaris, a company that specialises in accessible travel in Africa.We continue their journal of a remarkable holiday.Day 14: Before the injury to Ian’sbuttocks during the elephantride, he and Sue were supposedto fly to Windhoek in Namibiawith the rest of the safarigroup. Obviously they were notable to do this so Endeavourmade minor adjustments tothe itinerary in order to includethem when Ian had recoveredsufficiently. Sue points outEndeavour could have justlet her and Ian find their ownway back to the safari groupwherever the group happenedto be at the time, but insteadEndeavour organised everythingin order for them to rejoin thegroup in Botswana – flights, roadtransport, etc.Due to the fact they now had tocatch up to the rest of the safari,Endeavour organised for Sueand Ian to be driven to the smalltown of Shakawe in Botswanavia the Caprivi Game Park,which gave them an opportunityto do some game viewing onthe way. In Shakawe, they metup with the Endeavour team tobegin the Botswana leg of thetrip. This was also the first nightthey would be spending in atent!Sue admits that she and Ianwere fairly apprehensive aboutstaying in tents as the idearaised some of the old fears –access, appropriate facilities,and obviously, the natural ‘firsttime tourist to Africa fear’ ofaccessibility to you (the camper)from the various predators in theAfrican bush.The tents turned out to be veryaccessible, as were the facilitiessuch as the shower, toilet, andbeds. Safety was good. Sue pointsout that, in camping terms, thetents were excellent, but travellersshould not confuse five-star tentedaccommodation with five-star hotelaccommodation. “They are two verydifferent types of accommodationwith the same rating system,” Suesays.Day 15, 16, 17: While they were atthe tented camp for three days, Ianand Sue enjoyed the magnificenceof the world’s largest inland delta(the Okavango) by going on watersafaris.The Okavango Delta is formedwhere the Okavango River emptiesonto a swamp in an endorheic basinin the Kalahari Desert. Here, most ofthe water is lost to evaporation andtranspiration instead of draining intothe sea. Each year approximately11 cubic kilometres of water irrigatethe 15,000 km² area, creating atemporary and permanent home toa massive cross-section of Africanwildlife, making it a game viewer’sparadise.“It’s absolutely glorious. On oneouting, no more than ten feet fromthe boat, we saw a crocodile ‘deathroll’ with a full grown cow in its jaws.All the while, a huge pod of hipposwere watching the action along theedge of the river bank,” Sue says.Sue describes the boat used byEndeavour as a single-level gameviewing boat, on which transfersfrom mobility devices into seatingon the boat are not necessary.Passengers in wheelchairs andother mobility aids are carried ontothe boat on their aids and remainthat way throughout the trip.“Access to the boat was,unfortunately, down a flight of steps,however the wheelchairs werecarried down by four men,” explainsSue.“I guess some travellers wouldbe uncomfortable with themanhandling, or may even findit offensive. But really, you’re notgoing to find perfect access forsomeone with a disability in adeveloping country. However, if youtravel with Endeavour, there willalways be someone to lift, carry orgenerally organise an alternative.”When asked about the fear ofanimals at night while in the tent,Sue says that although pretty scaryon the first night, it’s all part of theexperience and the reason you’rethere in the first place.“Hearing hippos outside the tentat night was scary but brilliant –seeing their tracks the next morningillustrated how close they were andjust made us feel like we had really,really come to Africa. Although12 May to June 2010

it sounds dangerous, you’veprobably got more chanceof winning the lottery thansomething happening to you inyour tent.”Day 18: Today was anothertransfer day. Ian and Sue wereloaded into one of Endeavour’saccessible four-wheel drivesand driven to Maun, the ‘tourismcapital’ of Botswana and theheadquarters of numerous safariand air-charter operations whorun trips into the OkavangoDelta. The drive took the wholeday, so on arrival, Sue and Iansettled into their hotel, the IslandSafari Lodge, and crashed ontheir beds for the night. Sueremarks that accessibility andfacilities in the hotel were good.Day 19: Another all-day drivefor the group. The luggage andequipment were loaded into thefour-wheel drives and the teamheaded up to Moremi NationalPark. Even though it wasanother day in the vehicle, Suesays the drive was actually oneof the highlights.“The all day driving was a prettyenjoyable adventure. It was nicefor Ian not having to transfer inand out of the wheelchair and bein a totally accessible car. Thefact that you can see animalsbefore you’ve even entered thePark makes it far from boring.”Day 20: The group stayed inMoremi for about three days.Each day was spent viewinggame in the area. There wouldbe an early wake up callfollowed by a game drive withbreakfast out in the bush, thenanother drive, after which theywould return to the camp forlunch. A rest would be had in theafternoon (as most of the gameis fairly inactive at this particularpoint in the day), followed bythe much-anticipated night drivewhich would be followed bydinner by the fire while listeningto the night sounds of the Africanbush.Sue describes some of the drives:“Some roads were flooded so itwas a real adventure. Bridges weresometimes underwater, crocodileswould eye your vehicle’s very slowprocess through the river – it waswonderful.“While we were there we hadsome great game sightings – lions,leopard, elephant, giraffe. We sawpretty much everything. One of thebest things about the trip was sittingaround the fire at night and listeningto the lions roar to each other.“One of the bestthings about the tripwas sitting aroundthe fire and listeningto the lions roar.”“It is such a primitive sound andgives you goose bumps and makesyou realise you’re actually onholiday in a faraway place that is stillwild and relatively untouched.”Day 24: Today was part of the SouthAfrican leg of the journey. The groupheaded back to Maun and got ona plane to Johannesburg and thenanother to Cape Town. Sue remarksthat there were no major disasterson these flights and that, whereverthe group went, staff were againvery helpful.Day 25: Sue and Ian stayed in ahotel near Cape Town’s famousWaterfront. They managed to maketheir way to the botanical gardensin Kirstenbosch while also taking astroll along the waterfront itself.Day 26: Endeavour organised aboat trip for the group to Hout Bay,where the annual Red Bull BigWave Africa competition is held andwhere swells of up to 14 metres(47 feet) have been recorded. Thepurpose of this trip, however, was toobserve the area’s famous penguinpopulation. The boat then made itsway to Seal Island, which providesunique opportunities for thosewanting to observe attacks by greatwhite sharks on Cape Fur seals,and to observe social interactionsamongst both species.Sue admits that there were someproblems getting on the boat,which was slightly disappointing asthe boat trip was supposedly fullyaccessible. Able-bodied passengershad to assist passengers who useda mobility device to get on the boat.The trip itself was an hour long and,according to Sue, was wonderful butobviously involved anyone using awheelchair being ‘manhandled’ offthe boat again.After the boat trip, the team thenheaded off to the Cape of GoodHope, a venue with spectacularscenery. Indeed, the whole of thesouthernmost portion of the CapePeninsula is a wild, rugged, scenicand generally unspoiled nationalpark. The area was also fullyaccessible due to the funicular railtransport cab system.Day 27: This day was spentenjoying one of the area’s morefamous activities – wine tastingin Stellenbosch. Sue says thatthey went to a lovely winery calledWaterford’s Winery and encouragesanyone who travels to the area tovisit.Dinner that evening was atMoyo Restaurant, also inStellenbosch, and described bySue as ‘wonderful’. Sue and Iangot to experience traditional Africanthemes during the meal, such asdance and dress.Day 28: The group enjoyed anotherboat trip in the Langebaan Lagoon.Sue says that there was a mix upwith their boat and it turned out thatit wasn’t available. The owners,however, were kind enough to takethe group out on the lagoon on theirown boat to make up for the mishap:“They were very nice people andmade us feel very much at home.”During the trip, they anchoredout in the middle of the lagoonand enjoyed lunch. “It was a verypleasant experience. Totally relaxingand the food was great too,” saysSue.That evening they had dinner at theMay to June 2010 13

TRAVELfamous Cape Town fish markets.wonderful way to end the tour.go on SAFARIcontinuedDay 29: Today Sue and Ian drove toBolder Bay to see the penguins andreturned in the afternoon to do someshopping and have dinner on thewaterfront.Day 30: The group was takenvia ferry to Robben Island, whereformer South African PresidentNelson Mandela was imprisoned foralmost 27 years during the apartheidera. Sue describes the experienceas one that is truly moving.“A former inmate spoke to us duringthe tour of the prison and his storybrought a lot of emotions to thesurface,” she says. The trip includeda visit to Mandela’s cell. “I just couldnot believe how tiny those cellswere, it was extremely depressing,”says Sue.That night was their last in Africaand dinner was had at Cape Town’sAfrica Cafe, which Sue says was aDay 30: After the flight from CapeTown, they boarded the Qantasflight in Johannesburg. Sue notesthat although Johannesburg airport’sinternational terminal is very long,staff are always on hand to pushthe wheelchair if needed. Sue saysthat no problems occurred on theway home but on arrival in Sydney,staff couldn’t tell them where Ian’swheelchair was.Sue points out that on their secondtrip to Africa in 2009 they had abetter experience with Qantas. “Ian’schair was delivered to the door ofthe plane and then a wonderful staffmember accompanied us throughimmigration and customs and thenall the way out to our car.”If you have a travel story, pleaseemail:theadvocate@spinal.com.au.READONLINEREAD theadvocateONLINE.If you would prefer to readthe advocate online, go towww.spinal.com.au/in-thenews/advocate-magazine/.14 May to June 2010

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The Governor helps us celebrate 50 years!The 9 th of March marked the 50 thanniversary of the first meeting ofthe Spinal Injuries Association, whichwas then called the ParaplegicsWelfare Association.To mark this milestone, patron ofthe Association, Her Excellency, MsPenelope Wensley AO, Governor ofQueensland was guest of honour ata commemorative morning tea at theWoolloongabba office.Past and present board members,staff and life members celebratedthe golden anniversary with theGovernor, who spoke about theAssociation’s journey over the pastfive decades.Her Excellency recalled the speechof Dr Noble at that March 1960meeting where he described theAssociation President, GeorgeReader, as ‘paralysed from the neckdown, but not the neck up’.“That observation resonates downthe decades and goes to the heartof the Association’s ethos ... itsdetermination to encourage membersto focus on their abilities and whatis achievable, to enable them to beas independent as possible, leadingDavid Riley andPenelope Wensleydignified and fulfilled lives, part ofand contributing to their communities– and to have the community, in turn,understand, appreciate, welcomeand value their ability to contribute,”Governor Wensley said.Association member Zita Mullins wasat the organisation’s first meeting50 years ago and shared herrecollections with guests.“There was plenty of excitement andenergy in the air that warm Marchevening. There’d been plenty of talkfor so long about establishing anorganisation that supported peoplewith spinal cord injuries and it wasgreat to see the first meeting finallytake place,” Zita said.Association CEO Mark Henley saidthe morning tea was a celebration ofall that had been achieved.“Everyone has the right to live asindependently as possible in theirown home and participate in theircommunity. That’s our objective foreverything that we do here.”Highlight your localchampionsAs part of the Spinal InjuriesAssociation’s 50 th anniversarycelebrations this year, we’reproud to announce the launchof the Inclusive CommunityChampions initiative!The aim of Inclusive CommunityChampions is to recogniseand celebrate the businessesand services in the 12 MemberNetwork communities who go‘above and beyond’ to foster atruly inclusive community.There will be five nominationcategories in each of those 12regions (Brisbane, Bundaberg,Budekin, Gold Coast, Mackay,Maryborough, Far NorthQueensland, Pine Rivers,Rockhampton, Tablelands,Toowoomba and Townsville).Nominations for the InclusiveCommunity Champion open 1July and close 30 September.Nomination forms will beavailable via:• the July/August edition ofthe advocate• online at www.spinal.com.au• the Association’s Brisbaneand Townsville offices.Please phone either office ifyou would like a nominationform posted, faxed oremailed to you.Each category winner willbe named an InclusiveCommunity Champion ata morning tea held in eachof the 12 Member Networkregions throughout November,the same month as SpinalInjuries Awareness Week (7-13November).16 May to June 2010

CELEBRATING 50 YEARSCOMING OF AGE: the1980sThe 1980s saw the Spinal Injuries Association come of age. Beginning the decade as a smallorganisation based on a charity model, the Association grew significantly over the next 10years, raising its profile and becoming a leader in the disability sector.It is almost hard to believe that atthe beginning of the 1980s a personusing a wheelchair could not boarda bus, ride on a train or catch ataxi. A more equitable transportsystem became a priority issue forthe Association in the 1980s, withExecutive Officer Allan McDonellstating that “the most commonproblem for disabled people isfinding the means of getting from Ato B”. The push for accessible taxiswas led largely by Rod Walters,who began the decade as theAssociation’s Vice-President andended it as its President, afterBruce Cruickshank resigned. Rodremembers the campaign as longand difficult:“It took three years and lots oflobbying. I still remember the callfrom [then Transport Minister] DonLane telling me he’d got it through.”The scheme began in 1986 withjust three taxis and Rod as the firstState Government ministerIvan Gibbs and Rod Walters atthe opening of the Woolowinhouse, 1987passenger (“I think we just wentdown the road and back again.”).Transport was one issue but, asAllan McDonell reported at the time,“it is one thing to get to a place andanother thing to be able to enter”.The Association began to lobby forequitable access to public buildings,thoroughfares, public toilets,cinemas, theatres and all newbuildings and renovations. It was notan easy fight – the Association hadto lobby the Housing Commissionto put in accessible paths anddriveways so members could getinto their own homes – but onethat saw the Association build aprofile as an authority on accessadvice. Board members beganadvising the Housing Commissionon the accessibility of its units andthe Association made a significantcontribution to the QueenslandGovernment’s revised housingpolicy for people with disabilities.Rod Walters advised BrisbaneCity Council on the selection of itsnew Community Services Officer(John Cartwright) and, in a majormilestone, worked (alongside wifeJill) with Expo 88 planners to ensurethe event was accessible to all.Rod says Expo was the first majorAustralian event to actively plan foraccess.“It made a huge difference andwas the impetus for lots and lotsof changes in that area,” says Rodtoday.Under the leadership of AllanMcDonell, the Associationestablished what is now knownas its Spinal Advisory Service(SAS), with the aim of reducingthe hospitalisation of members forcommon health issues such aspressure sores, respiratory problemsand urinary infections. Donna Harre(now Executive Manager, PersonalSupport Plus) and Frances Porter(now Executive Manager, ClientAt a glanceMembership cost $5 a yearIn 1986, the Association had581 membersIn 1987, the Associationmade a TV ad with Channel9 to educate the public aboutaccessible parkingThe Association got its firstcomputer in 1985The Association celebratedits 25th birthday in 1985 butdecided against any specialcelebrationsMay to June 2010 17

CELEBRATING 50 YEARS: the 1980scontinuedServices) were the first two SASnurses. Frances says that, aswell as from keeping peopleout of hospital, SAS helpedthe Association influence whathappened in the Spinal InjuriesUnit.“The feedback we brought to theUnit reminded them that life forour members really started whenthey got out of it. As nurses, wehad a holistic view of people’sinjuries and we knew how hard itwas for them to get home.”The 1980s sawmajor changes inthe government’sapproach to disability.In one year, Frances andDonna made 2,484 clients visitsall over Queensland. Donnaremembers one three-week roadtrip from Cairns to Brisbane tosee members – while using theAssociation’s first ‘brick-like’mobile phone!The 1980s saw major changesin the state and federalgovernment’s approachto disability. 1984 saw thefederal government establishan Office of Disability, whosepriorities included phasingout the ‘sheltered workshop’and integrating people withdisabilities into the workforce. In1986, a new Disability ServicesAct introduced what the thenMinister for Community ServicesDon Grimes described as ‘evenradical’ ideas regarding jobsand housing for people with adisability. The legislation aimedto recognise that ‘people withdisabilities are individualswho have an inherent right torespect for their human worthand dignity, with the samefundamental rights as othermembers of society’. The Act meantbig changes to how funding wasdelivered. People with disabilitiesnow received individual fundingto pay for their own carers, ifthey wished, and so marked thebeginning of the end for institutionalliving. In the 1980s the Associationowned three ‘Wheelie Houses’ (atAscot, Wooloowin and Ashgrove)but by 1988 the Board was seriouslyquestioning its position on groupaccommodation. Asked AllanMcDonell: “Are Wheelie Housesinstitutionalisation on anotherplane?”Reflecting the new emphasis onindependence, the Associationchanged its name in 1989, droppingthe word ‘Welfare’ and becomingthe Paraplegic and QuadriplegicAssociation of Queensland. RodWalters explained the change:“We want our members and thecommunity in general, to see theAssociation as more than just a‘welfare’ organisation ... we want itto be seen as an agent of change insociety, an advocate for its membersand people with disabilities ingeneral.”“We want our membersand the community tosee the Association asan agent for change, anadvocate.”In the mid-80s the Associationbegan planning an injury preventionprogram to share safety messageswith school children. The programwas coordinated by Dianne Perrinand had seven presenters includingWayne Leo (who recently spoke tohis 250,000 th child) and Peter Harre(now the Association’s Peer SupportCoordinator).Named SEAT (Spinal EducationAwareness Team), the program wasan immediate success with schoolsbooking presentations even beforethe official launch. In the program’sfirst six months, SEAT presentersspoke to 8,820 students at 56schools – with the help of puppet‘Peter Prevention’!Rod Walters remembers that one ofthe key challenges of his presidencywas bringing a more professionalapproach to the Association’soperations.“I have never beenmore positive ... aboutthe future ... for ourAssociation.”“We had to bring a differentfocus and think of ourselves as abusiness, not as a charity,” saysRod. “Allan McDonell did that to agreat degree and bringing in MarkHenley [now CEO] as our firstaccountant gave us a solid businessbase.”Rod says that while the Associationbegan the decade with a ‘veryminor’ annual financial turnover,it ended the 1980s in a strongerfinancial position and a morestrategic approach to fundraisingwhich included building a donordatabase and soliciting sponsorship.The Association began recruitingboard members with valuable skills(such as lawyers and accountants)and, in the late 1980s, defined itsmission and aims. It was an excitingtime summed up by vice-presidentTony South as the decade drew toa close: “I have never been morepositive or enthusiastic about thefuture outlook for our Association.”Next issue: the 1990s. Share yourmemores! Please call Vanessa on07 3391 2044 or email:theadvocate@spinal.com.au18 May to June 2010

INFONEWSMARIONWEBBCoordinator, Information ServiceThe Anti-DiscriminationCommission Queensland(ADCQ)Discrimination can never betolerated, and governmentshave constituted legislation toaddress it.Primarily it is best that theparties resolve their issue, butin instances when this does notprogress to a fair outcome, thenthe ADCQ is the body to assistresolution. Below is an overviewof the processes of the ADCQ.The ADCQ’s role is to resolvecomplaints of discriminationand other contraventions of theAnti-Discrimination Act 1991and promote human rights inQueensland. However, theADCQ is not a tribunal or court.Complaints are managed byADCQ Conciliators who assistpeople to resolve issues bymutual agreement, using theconciliation process which isconfidential, free and impartial.ADCQ conciliators do not act asadvocates.If a complaint cannot beresolved through conciliation,it may be referred to theQueensland Civil andAdministrative Tribunal by thecomplainant for a decision.Services of ADCQ include:• provision of training andeducation for individuals,businesses and organisations tocreate a better understanding ofQueensland anti-discriminationlaw;• publication of information,resources and a website tomake people in Queenslandaware of their rights andresponsibilities under antidiscriminationlaw;• undertaking projects andactivities to engage withcommunity groups likely to bediscriminated against;• conducting research andmaking submissions concerningrelevant human rights issues inQueensland.Contact numbers for the ADCQ are1300 130 670 (statewide) or TTY1300 130 680. You can also visit:www,adcq,qld.gov.au.Reprinted from ADCQ webpage:What We Do.Polio Survivors GroupAcross Australia, many people livewith lifelong permanent effects ofpolio and/or discover symptoms ofthe original disease return in theirlater years.There has been much workundertaken through the years toraise awareness of the later effectsof polio and post polio syndrome,and, in 2008, Polio Australia wasformed to link all the organisationsthat coordinate polio support groupsacross Australia.In March Bill Shorten, ParliamentarySecretary for Disabilities andChildren’s Services, launchedthe Parliamentary Friends ofPolio Survivors Group, whichis recognised as a valuablerelationship with a group ofparliamentarians who recognise thedisease and its implications for thepeople who live with it.ConcessionsThe Queensland governmentoffers many concessions to itsconstituents, particularly peoplewho live with minimal means.The website below offers a list ofconcessions, and information of anycriteria that must be met:www.communityservices.qld.gov.au/community/concessions.If you have not got access tothe internet, please contact theInformation Service on Brisbane3391 2044 or toll free 1800 810 513for the list of available concessions.May to June 2010 19

MEMBER NETWORK NEWSAn important role of our membernetworks is raising and addressingissues in the community thatimpact on daily lives. These issuesare diverse and include accesand availability of services. Somemember networks are settinginspiring examples of how engagingwith their communities can make areal difference.In Moreton Bay, member networkfacilitators Kay and JimmyConsidine wrote a detailed letterto their local council outliningaccess issues in their communityand suggested solutions – manyof the problems were promptlyfixed. The Considines then thankedthe Council and reinforced thepositive relationship they arebuilding. Now they have arrangeda meeting between John Mayo (theAssociation’s Community RelationsENGAGING WITH YOUR COMMUNITYExecutive Manager) and the Councilto discuss what it means to be aninclusive communityIn Toowoomba, member networkfacilitator Wendy Adams hasbecome a local ‘expert’ on accessissues and was asked by Council toadvise on their master plan. JohnMayo will now talk to Council aboutinclusive communities.The Townsville Member Networkis focusing on transport in 2010.Similarly, the Tablelands membernetwork is targeting ‘shop front’access and transport this year. Thisis a small group that proves youdon’t have to be big to do big things!In Rockhampton, member networkfacilitator Des Ryan is working withCouncil on their 20-50 year plan andensuring an inclusive communitiespolicy is on the agenda.The Maryborough membernetwork, led by Brian Wilcox, israising issues about access andabout what constitutes an accessiblehotel room.Des Ryan, who also advisedRockhampton Council on theaccessibility of the Des Ryan Pier,has a simple message to otherswanting change in their community.“Get involved. You’ll have somewins and some losses but if you usesensible arguments, most peoplethat you lobby will listen to you,”he says. “Persevere but do it in afriendly manner. Build up networks.The beauty of the regions is that youget that relationship with people – incouncil and in business – over time,”he says.Member Networks around QueenslandBrisbaneMeeting: 11am, 1st Wednesday of themonthVenue: Spinal Injuries Association,109 Logan Road, WoolloongabbaRobert Montocchio T: 07 3379 4771Email: rmontocc@bigpond.net.auGeorge Dougherty T: 07 3844 2949Email: georgedou@optusnet.com.auBundabergMeeting: 10.30am 1st Tuesday of themonthContact Facilitator for time and venueChris Grimes T: 07 4156 1639Email: chrisgrimes@optusnet.com.auBurdekin/BowenMeeting: contact facilitatorScott Stidston T: 07 4783 1150Email: stido@internode.on.netCairnsMeeting: Last Tuesday of the month.Contact facilitators for time and venueLynne Barnes T: 07 4055 6675Nita Carling T: 07 4045 1009Email: nita.carling@bigpond.comMackayMeeting: 12 noon, 1st Friday of the monthVenue: contact facilitatorJohn Smith T: 07 4959 3195Email: jh2smith@bigpond.comAlan Elliot T: 07 4954 8646Email: alanell@datacodsl.comMaryboroughMeeting: 12 noon, 3rd Wednesday of themonthVenue: Carriers Arms Hotel, MaryboroughBrian Willcox T: 07 4121 4358Email: brianwillcox@bigpond.comLes Skerry T: 07 4129 0998Moreton Bay (formerly Pine Rivers)Meeting: 1pm, 1st Monday of the monthVenue: Kallangur Memorial Bowls ClubJim and Kay Considine T: 07 3283 8787Email: kay.considine@bigpond.comRockhamptonMeeting: contact facilitatorDes Ryan T: 07 4926 4551;M: 0417 775 365Email: dryan@heyer.com.auTablelandsMeeting: contact facilitatorsMark Taylor T: 07 4093 3821Email: vireya123@gmail.comRussell Dafforn T: 07 4091 7975ToowoombaMeeting: 12pm, Friday following PensionDay(Feb 19th, Apr16th, Jun 25th, Aug 13th etc)Venue: contact facilitatorWendy Adams T: 07 4637 4160Email: wenadams@aapt.net.auTownsvilleMeeting: 10:45am (for 11am),last Tuesday of the monthVenue: Spinal Injuries Association,488 Ross River Road, TownsvilleScott Stidston T: 07 4783 1150Email: stido@internode.on.net20 May to June 2010

Go card access cardAs a solution to the current limitationsfor people with a disability to use theGo Card public transport ticketingsystem in Southeast Queensland,the State government has introducedthe TransLink Access Pass. It isspecifically for people with a disabilitywho can travel independently butwho are medically assessed asunable to ‘touch on’ or ‘touch off’ witha Go card. The pass costs $60 forsix months’ travel on a bus, train orferry. More information in the nextthe advocate -- in the meantime, call131230 or visit www.translink.com.au/accessibleservices.php.Vehicle Rego and CLEM7 tollsBitz has asked Queensland Transportand Rivercity Motorway Group forregistration and toll costs so memberscan understand comparative costsbitzbetween cars and vans.Currently, Queensland Transport’sregistration renewal costs for thevehicle classes of passenger cars andvans/light commercial vehicles are asfollows: $678 for a passenger car and$720 for a light commercial vehicleor van. These figures are based onthe following criterion: four cylinders,private registration, the same CTPinsurer is being used across thevehicle classes and it is a 12 monthregistration. In this example, RACQwas used as the CTP insurer. Thecost may vary depending on the CTPinsurer chosen.Bitz wondered how the new CLEM7tunnel operator, photographicallyrecording vehicles, would designatetolls. The answer is:Motorcycle – $2.14Car – $4.28Light commercial vehicle/van: if avehicle with a gross vehicle massgreater than 1.5 tonnes, but notexceeding 4.5 tonnes, is privatelyregistered, it will be classified as a carand charged $4.28. A commerciallyregistered vehicle of the same weightwill be charged $6.42Heavy commercial vehicle (all vehicleswith a gross vehicle mass greater than4.5 tonnes) – $11.33An image processing fee of 40c willapply when a vehicle (other than amotorcycle) passes the toll without atag. This fee is waived for the first sixmonths of CLEM7’s operation.Bill of Rights lostThe federal Attorney-General hasannounced the government responseto the Brennan inquiry on humanrights. Essentially, the governmentwill spend some money on educationbut will not move to introduce a Billof Rights, which has disappointeddisability advocates who saw such aBill as the only way to give credencein law to Australia’s adoption of the UNConvention on the Rights of Peoplewith a Disability.STAFFPROFILEA transplanted Melbournian, CathyLengyel is relishing Townsville’s greatoutdoors, humidity and the chance tomake a difference to members.Cathy is the manager of the NQ officeof the Spinal Injuries Association.She leads the staff who work in theTownsville-based office and supportsmembers who live north of Sarina.Qualified in social work and businessmanagement, and with more than 20years experience, Cathy is passionateabout advocacy and working with thecommunity.Why did working for theAssociation appeal to you?I came to the Association following abrief stint managing a large residentialcare site in Townsville. My ‘fit’ with theheavy compliance requirements ofresidential aged care was not a goodone, and I missed my links with thecommunity. I was keen to build on myadvocacy, marketing and businessdevelopment skills, so when thisopportunity came up I jumped at it!What do you enjoy most?I am really enjoying cementing myrole in NQ. My role has a strong focuson systemic advocacy and linking inwith key networks and stakeholdersin the NQ region to improve accessand inclusive communities for peoplewith spinal injuries. This will mean myinvolvement on disability networksin Cairns, Townsville, Mackay andMt Isa, representing the Association,advocating for members and providinginput on policy and access issues,such as the National DisabilityStrategy framework and Blue Skies.I’m enjoying all aspects of the role– working with members, our staff,providers, our Supporters Committeeand exploring opportunities foraddressing service gaps, raisingawareness of spinal injury, expandingour services and raising support andfunds for the Association’s activities.What are the priorities for NQ?Our focus is on creating inclusivecommunities and providingopportunities for people with spinalinjuries to gain better access toequipment, personal care and healthservices. I am involved in a numberof working groups in NQ to move thisagenda forward.What do you think of Townsville?I moved here with my husband topursue an alternative lifestyle and justlove it! We are both avid snorkellersand bushwalkers and love theopportunities up north for this. I amalso one of those crazy people thatlove the heat (even the humidity)!May to June 2010 21

POST POLIO NEWSNUTRITION, PHYSICALACTIVITY ANDPOST POLIOWhile living with post poliosyndrome (PPS) is a challenge,small changes to your eating andexercise habits can help increaseyour energy levels and make youfeel better.Eating betterA healthy diet is:• High in fruit and vegetables• High in bread and unprocessedcereals• Full of protein and dairy• Low in salt and fat• One that includes breakfastPeople with PPS and other mobilityissues can face barriers to abalanced diet, including the needfor physical assistance with foodpreparation and difficulty in gettingto the shops. Consider preparinglarge batches of food and freezingportions, as well as online shoppingand home delivery options.Being activeThink of movement as anopportunity, not an inconvenience,and try to be active everyday inas many ways as you can and forat least 30 minutes. Being activehas huge health benefits includingreducing your risk of cardiovasculardisease, Type 2 diabetes andsome cancers, and helpingprevent depression, anxiety andosteoporosis.Perhaps not surprisingly, peoplewho cannot walk or have difficultywalking often have trouble meetingthe recommended guidelines fordaily physical activity. A US studyshowed that more than half (56%) ofpeople with a disability did no leisuretime physical activity at all, with only21% getting in their recommended30 minutes of physical activity perday. While it can be difficult to getactive with PPS, the benefits areworth the effort and include:• Better physical functioning andmore independence• Higher levels of goodcholesterol• Less shoulder pain for manualwheelchair users• Improved respiratory function• Decreased hospitalreadmissions and secondaryconditions• Better psychological well-being• Improved social functioning andemployment optionsMaking even small changes to youractivity levels will reap big results!Get moving at every opportunityand find an activity you enjoy. SetSMART goals (small, measurable,achievable, realistic, timely) andreward yourself when you achievethem. Exercise programs should betailored for PPS, remaining mindfulof energy conservation (restingbetween exercises), avoidingmuscle over-use (varying themuscle groups being exercised) andusing techniques like hydrotherapyto assist with strengthening andcontracture relaxation.Monitor your activity and considerexercising with a friend, for supportand extra motivation. Think of thehealth benefits and you’ll soon feelbetter in body and mind.Adapted from a presentationgiven by Dr Sean Tweedy at the2009 Spinal Injuries AssociationConference.Email theadvocate@spinal.com.auor call 07 3391 2044 if you wouldlike a copy of the presentation sentto you.Post polio support groups around QueenslandBrisbaneMeeting: 2pm, 2nd Saturday everysecond month, (June, Aug, Oct)Venue: Spinal Injuries Association,109 Logan Road, WoolloongabbaHugh Banney T: 07 3355 3298Email: hughban@dodo.com.auCairnsPlease contactBernice Quinn Ph: T: 07 3391 2044Coordinator Member NetworksEmail: bquinn@spinal.com.auGold CoastMeeting: 10.30am, 1st Monday of themonthContact facilitator for detailsLyn Glover T: 0448 206856Email: lyn.glover@hotmail.comGraeme Johnson T: 0407 750 626Email: graron1@dodo.com.auSunshine CoastMeeting: 10am, 1st Friday of the monthContact facilitator for detailsCathy Newman T: 07 5447 6608Email: cathynewman@tadaust.org.auToowoombaMeeting: 2pm, 2nd Thursday of themonthVenue: Lourdes Activities Room,227 Spring St, ToowoombaFr Brian Sparksman T: 4632 8835Email: achance@twb.catholic.org.auTownsvilleMeeting: 2pm, 1st Sunday of the monthVenue: Spinal Injuries Association,488 Ross River Road, TownsvilleMary Gibson T: 07 4779 8838Email: emarygibson@bigpond.com22 May to June 2010

MAILBAGDebate over accessibleI must disagree with Peter Harre’sarticle in the January/FebruaryImprint (‘You said what?’ page 10)about labelling toilets and parkingbays as ‘Disabled’, being outdatedand inaccurate, as he says parentswith prams and the elderly, alsoneed to use these facilities.By trying to make those of us whouse wheelchairs blend in to thecommunity, almost to the pointwhere we are invisible, it also makesit very difficult to raise awareness ofour needs.I have always been vocal aboutthe need for disabled parking atshopping centres, as without it,I am unable to get out of my carand access these facilities. I washorrified recently when I droveto a large shopping centre north ofBrisbane, to find that most of theunderground disabled car parkshad been turned into ‘Parentswith Prams’ parking -- to be exact,15 Parents’ spots, but only fourDisabled spots.When I enquired at the InformationDesk why this had happened, I wastold that community pressure hadmade them provide the extra spacesto parents.Where was the community pressurefrom Disabled groups?Before I became wheelchair bound,I raised two children so am aware ofthe needs of parents. I can definitelysay it is nowhere near as difficult fora parent to be able to park and get apram out of the car, as it is for me toget my wheelchair out, and thensafely transfer into it.Using the word ‘Disabled’ whenreferring to car parks and toiletshelps people to understand whythese facilities are there, andhow vital they are to those inwheelchairs.Using a generic friendly term suchas ‘Accessible’ would only confusepeople, and make life much harderfor those of us who already findaccess difficult on a daily basis.Judith Grey, CloseburnPraise for ParavillaI wanted to let people know whata wonderful place I have found inParavilla (www.mdsia.org.au) inMackay.I am the mother of two sons withspinal cord injuries; their accidentswere five years apart. My eldest sonis a paraplegic and my youngest is aC5 complete quadriplegic.When we left hospital and returnedto a country town, we realisedwhat a huge job lay in front of us– to live day to day, stay positiveand focused on the future, drivingthree hours twice a week to use ahydrotherapy pool. We made thehard decision to move away fromour home town to a city where weknew nobody.After a year I contacted Paravillato see if they could help us at all.It sounded too good to be true butI put in an application and made avisit. So pleased we did!Our son is now swimming, drivinghis own modified car, cooking hisown meals (is able to do his ownwashing and dishes) and has agood friend with whom he fishes.His future looks much brighter now.In general, he is moving on with hislife.We are able to be his parents againwhich is the most wonderful job inthis world.Marian Simmons, GladstoneCLASSIFIEDSFor sale: Polar/Glide wheelchair with extra padded shapedback. Total cost $1,200. Very little use. Sell $500. CallGraham T: 07 3820 7119.Ibis Vehicle Access Lifter: (not needed anymore) Ibis 200lifts to 110kgsV.G.C. Once fitted it consists of a main frame,centre swivel arm and a chest pick up bar. Sling is included.The unit plugs into a plug similar to a cigarette lighter andhas remote control. It can be fitted on the floor on thepassenger side or in the back slide door of a van. Whenpatient is seated it pulls apart and stores in boot or backseat. Manufactured by Para Mobility in accordance withAES AS3581.New approx $3000 will sell $950 ono. ContactJimmy and Kay T: 32838787 or 0407 762737 to come andview or just find out more.Freedom Lift: This lift is used to lift wheelchairs or scooterup to 200kgs. Will lift into back of station wagons,utes, vans(I am not sure about boots). Conveniently adjustable, smoothand efficient operation,corded remote control with transportlocking pin. Changed vehicles and is not needed anymore.Good condition. New approx $2,000 will sell $850 ono.Contact Jimmy and Kay T: 3283 8787 or 0407 762737 tocome and view or just find out more.Arjo Maxi Lite Hoist; Patient Lifter (as new): Only used afew times and is not needed anymore. Lifts to 160kgs has awish bone and mesh sling. Spare battery (new). Does foldup flat to travel. New cost $3,600. VGC. Will sell $1,250 ono.Contact Jimmy and Kay T: 3283 8787 or 0407 762737 tocome and view or just find out more.Elf Pro Med patient lifter: The Elf lifter will lit to 127 kgs, itis in good cond, has some paint off on the legs. Does haveremote control and battery but sorry there is no sling. Has awishbone, not a bar to lift with. Will sell $500 ono. ContactJimmy and Kay T: 3283 8787 or 0407 762737 to come andview or just find out more.1986 XF Ford Fairmount Ghia, maroon colour, goodcondition, runs well, push pat hand controls, ideal for personwith paraplegia, RWC, rego runs out 10/05/10. Bargain at$1,200 T: 07 5547 8056 or 0401 400 862.May to June 2010 23

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