Autumn 2017
How are people with disabilities approaching dating and relationships?
HER LEGACY LIVES ON – A TRIBUTE TO JOAN HUME TRANSPORT REMAINS A NATIONAL ISSUE OF CONCERN
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From the CEO From the President News Fundraising
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Technology Legal rights Information and resources Review NDIS profile
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Patron: His Excellency General the Honourable Sir Peter Cosgrove AK MC (Retd), Governor-General of the Commonwealth of Australia accord is a publication of Spinal Cord Injuries Australia ACN 001 263 734 Incorporated in NSW Head office: 1 Jennifer Street, Little Bay NSW 2036 Celebrating 50 Years: 1967−2017
Phone: 1800 819 775 Fax: 02 9661 9598 Email: office@scia.org.au Website: www.scia.org.au
Editor Fiona Jackson
Designer Shauna Milani
Sub Editors Rosemary Gillespie Glynis Skepper
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Printer: Blue Star Group; ISSN 1448-4145. The opinions expressed in accord are not necessarily those of Spinal Cord Injuries Australia (SCIA) or of the Editor. They are published to create a forum for debate on issues related to people with disabilities. Original material in accord can be reproduced only with permission from the Editor. Information in accord is furnished solely as a guide to the existence and availability of goods or services. accord has neither the staff nor the facilities for testing and evaluating any of the services or items and therefore can assume no responsibility for the effectiveness, safety or quality of any such items or service. accord is funded by the New South Wales Department of Family and Community Services, Ageing, Disability and Home Care.
FROM THE CEO
PETER PERRY
Celebrating 50 Years: 1967−2017
As long as people living with SCI have fewer opportunities in their lives than the rest of the population, I don’t believe our organisation has done its job.
Alliance to develop NATIONAL SCI STRATEGY T
he Australian Spinal Injury Alliance (ASIA) is an alliance of all the major community organisations in Australia that focus on improving the lives of people living with a spinal cord injury (SCI). ASIA was formed a few years ago now, and its main activity has been focused on Spinal Cord Injuries Awareness Week, which occurs in September each year. For some time, I have been putting forward the view that the Alliance needs to work towards a National SCI Strategy. In the same way that the United Nations or the G20 bring countries together to agree on future directions and goals in areas such as foreign aid, economic activity or climate change, ASIA has the opportunity to work together to create lasting change, in ways that the individual organisations cannot achieve alone. As long as people living with SCI have fewer opportunities in their lives than the rest of the population, I don’t believe our organisation has done its job, nor lived up to the expectations of its members. In areas such as employment prospects, social isolation, discrimination (both explicit and implicit), relationships, mental health, and overall wellbeing, our members still lag well behind the broader population. I’m now very pleased to share that the Alliance members will start working towards a National SCI Strategy. It is our intention that this will lead to more collaborative projects in the future, and eventually to the creation of a National Strategy that will have a real and lasting impact. The three areas that the Alliance members have agreed to work on are: 1. As the National Disability Insurance Scheme (NDIS) is rolled out nationally, we are hearing from our members that in many cases the NDIS planners – the people who are employed to develop individual’s NDIS plans – don’t really understand the needs of people living with SCI. We are also seeing inconsistencies and different outcomes
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for people, depending on where they live. To address this, we are going to campaign for a separate category for SCI within the NDIS support and planning guidelines, which should ensure appropriate and consistent funding; furthermore, this must be underpinned by the NDIA sourcing appropriate planners who have the knowledge and expertise to establish a plan for people with SCI. 2. M any of our members have contacted me regarding their concerns about the arrangements that are being put in place for people aged over 65 who will not be eligible for the NDIS, and all of the Alliance members have been hearing similar concerns. We’ve agreed to ascertain what action National Disability Services is taking with respect to people living with disability (and, more specifically, SCI) who are 65 or over. 3. Another area that is of major concern to all of the Alliance members is the continuing low rates of employment for people living with SCI. Despite the NDIS being largely based on improving these employment rates, and the existence of a range of government employment programs for many years, things just aren’t improving quickly enough. As there will be a major review of the Disability Employment Service scheme this year, we are planning to jointly contribute to this review, with the goal of significantly improving the employment rate of people living with SCI. In coming months I will provide updates on all of these projects. I truly believe that by working together, the ASIA will be able to create positive change much more effectively and quickly than would otherwise be possible. In closing, I would like to pay tribute to our President, Joan Hume, who passed away on 10 March. Joan has been at the forefront of the disability rights movement for countless decades, and her loss is a great blow to our organisation, and to the world at large; she will be sorely missed. ▪
JOAN HUME
FROM THE PRESIDENT
Celebrating 50 Years: 1967−2017
This page has been left blank to honour the legacy of Joan Hume, President of Spinal Cord Injuries Australia, who passed away suddenly in March 2017.
NEWS
Not happy with a decision made by the NDIS about your support?
Demystifying the NDIS for you
If you are not happy with the level of support you receive or if you’re dissatisfied with a decision made by the National Disability Insurance Agency (NDIA) about your support, you can ask to review that decision. Under the National Disability Insurance Scheme (NDIS) Act, many decisions made, such as eligibility and the types of support you receive, can be reconsidered.
Spinal Cord Injuries Australia (SCIA) is hosting another series of member information sessions to assist people living in New South Wales entering into the National Disability Insurance Scheme (NDIS) this July.
To do this, you must first seek an internal review through the NDIA and await a decision. If you are then still not happy with this outcome, you can apply for an external review by the Administrative Appeals Tribunal (AAT), which is independent to the NDIA.
How to request an internal review of a decision You can do this in several ways, including: • Submitting a written request to: Chief Executive Officer National Disability Insurance Agency GPO Box 700 Canberra ACT 2601 • T alking with someone at an NDIA office • Calling the NDIS on 1800 800 110 • S ending an email to: enquiries@ndis.gov.au • Submitting an application to the NDIA.
SCIA is now funded to assist participants throughout the review process by providing a support person, whose role is to: • Foster self-advocacy (supporting individuals to put their own case before the AAT). • Where self-advocacy is not appropriate, provide individual advocacy support, developing and implementing an individual plan in partnership with the applicant. • Assist applicants to navigate the process of seeking an AAT review of NDIA decisions, including preparing documents, and attending conferences and hearings. Please contact us for any assistance or send us an email to NDISappeals@scia.org.au Further details can be found on the NDIS website:
David Bowen, the inaugural CEO of the National Disability Insurance Scheme (NDIS), has announced his retirement this month. Overseeing the scheme since 2012 through its three-year trial period and the commencement of the national roll-out, Mr Bowen is set to leave in November, leaving another three years of roll-out to continue. Despite much publicised issues during the scheme’s implementation to date, Chair of the newly appointed Board of the agency responsible for the NDIS, Dr Helen Nugent, credited Mr Bowen with “excellent stewardship” and achieving his objective of providing the best possible supports and care for NDIS participants. The Board is expected to appoint a new CEO before Mr Bowen retires. Aside from helping to design the NDIS, Mr Bowen was also one of the architects of the NSW Lifetime Care and Support scheme. The NDIS is expected to cover 460,000 Australians by 2020. accord magazine
You will hear from our team about how to prepare for your planning meeting, what questions to ask, the types of services you can include, and how SCIA can help you within the NDIS. The sessions will be held across regions that will transition into the scheme from 1 July 2018. We will also be sharing information via our Facebook page, so make sure to follow our page to receive event registration information. You can also complete a form online to reserve your seat at a location near you. The information sessions are free for members and their families. You can find out where they will be held and how you can reserve your place on our website: scia.org.au/ndis
https://www.ndis.gov.au/participants/ reasonable-and-necessary-supports/ decision-review.html
Inaugural NDIS chief executive resigns
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The sessions will cover general information about the NDIS and include specific information for people with spinal cord injury (SCI) and other physical disability to help them with the planning process.
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NEWS
Accessible resort Sargood on Collaroy opens Accessible travel and accommodation is now a reality for people with spinal cord injuries (SCI) as the much anticipated Sargood on Collaroy officially opened on 1 March. This resort-style facility is being hailed a world first in the beautiful coastal setting of Collaroy Beach, New South Wales.
South Australia’s national wheelchair basketball team, Adelaide Thunder, has managed to secure funding to return to the national league this year, kicking off their season in May.
This fully accessible resort has welcomed its first paying guests and is part of rehabilitation organisation Royal Rehab’s ongoing efforts to address the challenges faced by people with disability when wanting to travel. The facility offers 17 brand new apartments, a state-of-the-art therapy area, gymnasium and expert staff. It promises to “revolutionise holidays” for people with disability and has already seen bookings coming in from as far away as Norway. Sargood on Collaroy bridges luxury and accessibility for people with spinal injury, and employs a team of expert staff, all of whom are up to date with
Adelaide Thunder returns to league with community funding
the latest research and evidence-based innovations in spinal injury management and recreational therapy. Sargood will provide opportunities for skills development, community engagement and participation in a number of innovative activities such as their beach access program, that allows guests in wheelchairs to safely access Collaroy’s beautiful sands and clear water under the supervision of trained clinicians.
Despite previous success in the league, the club was forced out of the competition back in 2013. To date, fundraising efforts have only managed to raise half of the money needed to re-enter the competition. However, Adelaide’s West End Community Fund – which uses public donations to support local community causes – has come to their aid and given the team not only the shortfall required for this year, but a good portion of the funds needed for 2018 as well. This is great news and we will be following the Thunder’s progress with great interest!
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NEWS
Big Day Off brings big rewards Greg Killeen trialling the wheelchair
accessible vehicle from Hertz.
Spinal Cord Injuries Australia (SCIA) is calling all businesses to register in the only national raffle where employees can win a “Big Day Off ” from work, and where monies raised directly support people with spinal cord injury (SCI).
Celebrate our anniversary with us Spinal Cord Injuries Australia (SCIA) is hosting a gala dinner in Sydney this September to celebrate our 50th anniversary and we are inviting all accord readers to join the celebrations. Hosted by SCIA’s Chairman, Mr Brad O’Hara, the dinner will be held at Randwick Racecourse and will be an evening celebrating SCIA’s history and people as well as sharing hopes and aspirations for the future. There will be special guests, familiar faces and entertainment that will make it a night to remember. Tickets for the SCIA 50th Anniversary Gala Dinner will be available to purchase in June, so if you’d like to attend, add 8 September 2017 into your calendar and watch out for more information on our website and in our e-news.
Share your memories with us To celebrate our 50th anniversary and share what has made our organisation unique and one to be celebrated, we are asking members and friends to share their photos and videos with us so they can feature in our anniversary issue of accord magazine and other celebration events and activities. We would like to share the history, accomplishments and story of our community over the past 50 years with everyone, and we can only do this with the help of our community, our members. If you would like to share what Spinal Cord Injuries Australia (SCIA) means to you, please visit our website scia.org.au/whatsciameanstome to find out how you can be part of our anniversary celebrations and leave a legacy for the future of SCIA. 6
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For the third year running SCIA is working with the Big Day Off Trust and SpinalCure Australia in a team effort for this great fundraising initiative designed to raise money and awareness of SCI. When businesses register, their staff can buy a ticket to win a Big Day Off from their workplace. The Big Day Off is the brainchild of a group of business people in Albury who were inspired by James McQuillan, a talented sportsman who became a quadriplegic after an Australian Rules Football injury in Albury in 2014. Monies raised from the raffle will go directly into the community to support people with SCI, such as purchasing robotic equipment used for rehabilitation and therapy. Simone Svarc, Occupational Therapist, Inpatient Rehabilitation Ward at Albury Wodonga Health, says the robotic
equipment will make a significant difference to patients. “The current research and evidence about upper limb rehabilitation, in particular that this equipment provides, is generating a lot of excitement,” Ms Svarc said. “One of the primary things it allows is the intensity and repetition of particular exercises that one-on-one therapy can’t always provide.” SCIA is recruiting businesses to take part now in this great initiative so if you would like to nominate your workplace, simply visit bigdayoff.org/ nominate-2017 and the team will do the rest! If you’re a business owner you can register on the Big Day Off website www.bigdayoff.org and donate days for your staff to have the chance to win. Tickets are $5 and employees can buy as many tickets as they like to win a day off to do whatever they want. For more information on the Big Day Off visit bigdayoff.org Below: John Retford from the Big Day Off Trust with some of the team at the Inpatient Rehabilitation Ward at Albury Wodonga Health.
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FUNDRAISING
Experience Oz partnership brings new benefits Spinal Cord Injuries Australia (SCIA) would like to officially welcome Experience Oz as a partner with discounts on more than 3,000 experiences in Australia and New Zealand! Choose from attraction and theme park tickets, sightseeing cruises, dinner and show tickets, rainy day activities and more! Simply enter SCIA10 at the checkout to receive your discount.
OT Clinics on tour Independent Living Specialists has run their first occupational therapy clinics in Ballina, Tamworth, Port Macquarie and Bathurst. These have been a great success and we look forward to continuing to run these on a monthly basis. If you would like to book a free appointment with an occupational therapist at a regional New South Wales clinics to discuss your homecare and mobility equipment needs, please visit www.ilsau.com.au/ scia (username and password is scia).
Celebrating our star fundraisers A big thank you to David Kunc for organising a fundraising ball with live music in Melbourne to support our NeuroMoves program. Everyone had a fantastic night and he raised an amazing $2,586 for SCIA. Another thank you to Louise Young and Michelle Piercy and her family for taking part in the HBF Run for a Reason and raising money for SCIA. They are all inspired by the strength and resilience of Louise’s son who suffered a serious spinal cord injury whilst out motorbike riding in August 2016. Stig Pederson took part in the Canberra Half Marathon in April to raise money and awareness for SCIA. Sadly the youngest son of one of his friends had a motorbike accident recently and, like so many other people, has had his life changed in the matter of a split second. His target was to raise $2,110 - $100 for each km of the run and we cannot thank him enough for all his support.
New equipment for NeuroMoves centres SCIA’s NeuroMoves has developed a variety of exercise programs to provide our clients with the best possible solutions to fulfil their individual goals and needs. In the last few months, we have been fortunate to receive grants from generous supporters to purchase new equipment needed to deliver these new programs from our centres at Lidcombe, Zetland, and Liverpool in New South Wales; and Bowen Hills in Queensland. We gratefully acknowledge and thank the following supporters who have made this possible: • Mazda Foundation – $30,000 for our kids’ centre at Lidcombe • New South Wales Government, through its Community Building Partnership program: • $67,905 for our centre at Lidcombe • $50,859 for our centre at Zetland • $9,908 for our centre at Liverpool • Aurizon Community Giving Fund – $3,685 for our centre in Brisbane
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Stig Pederson (right) with Brodie Clark.
The Honorable Ron Hoenig MP with NeuroMoves staff and clients at NeuroMoves Zetland.
Special thanks also go to our long term supporter, DOOLEYS Lidcombe Catholic Club, who donated $17,850. This welcome donation will allow SCIA to send additional NeuroMoves staff to the United States to participate in the Introductory Adult Locomotor Training course at the Neuro Recovery Training Institute in Louisville, Kentucky. Introduced in 2015, Locomotor Training is the most intensive exercise therapy program offered at SCIA’s NeuroMoves centres.
Do something amazing this year and join team SCIA Whether it be the Cole Classic, City2Surf or Run Melbourne – run, swim or cycle your way towards helping us overcome barriers to independence for people with spinal cord injuries.
Visit scia.org.au/events for some inspiration and get involved this year. teamscia@scia.org.au | 1800 819 775
COVER
Susan Wood, Media and Communications Coordinator, Spinal Cord Injuries Australia
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’m in a long-term relationship with my partner and some very adult decisions are being made. We don’t live together, although we are talking about it, and aspects of my disability have to be factored in. I often think about difficulties around moving, raising a family and even what my partner thinks about growing older. I have many unanswered questions, and they all feel very personal. And so it seems, do many others. Since starting at Spinal Cord Injuries Australia (SCIA) I have met many people and a topic that comes up over and over again is relationships. Not just questions about being in one, but questions about dating someone who is disabled, and what that means. How do other people with disabilities approach dating and relationships? Are they, too, asking themselves these same questions that I find myself asking? I was fortunate to speak to five people, all at different stages of their relationships, to discuss their experiences. I feel really privileged to share their very personal stories.
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COVER
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hris Sontag, 29, lives in Western Australia and sustained paraplegia after a motorbike accident three years ago. One of his first concerns after his injury related to the dating scene. How would people perceive him and would anyone want to be with him now that he had a disability? Trying dating both online and in person, Chris has found that people are generally accepting. He doesn’t advertise that he’s in a wheelchair straight away, preferring to share this when meeting in person. “I tried putting up a couple of photos of me in a wheelchair on my online profile but I found that it was a deterrent. Now I have an profile that doesn’t have any photos of myself in a wheelchair”, he says. Chris is conscious about the perceptions surrounding dating with a disability, and the general public’s response to it. Recently, he featured in an episode of the SBS series, Undressed. The show pairs up two strangers meeting for the very first time, giving them just 30 minutes to undress and get to know one another. Coupled with a woman named Julie, Chris found there to be pressure to look as capable as possible – not just for Julie, but for the viewers. “I did scrutinise myself about how I presented. I thought about it for a long time, really wanting to get it right.” He laments his disappointment about not being able to be more upfront and having to gain a level of trust before he can tell prospective dates that he’s in a wheelchair. “It’s sad that people will almost always stereotype you. People will assume that something else is wrong with you, too.” Being stereotyped is not uncommon and it’s a feeling shared by Matina Starrs, who says people saw her as being emotionally dependent. “People would say things like ‘You’ll be safer if you’re with me’ and think that because I’m in a wheelchair, I’m probably vulnerable and desperate.” ■
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atina, 47, lives in the Northern Rivers, New South Wales and sustained quadriplegia after a car accident in her 20s. She says she found dating to be a mixed bag of experiences. She met her husband, Eddie, four years after her accident, after being set-up
Chris Sontag
by friends. Matina says both she and her husband didn’t take the date seriously, but eventually started to fall for one other. He told her that she ticked all the boxes for what he wanted in a woman. “He said the only thing he didn’t have on the list was ‘must be able to walk’ followed by, ‘but I couldn’t disregard you. You were perfect in every other way’.” Planning a family when one half of a couple has a disability comes with added risks. Matina had been told her accident meant it was unlikely she’d be able to conceive. However, after a lot of research and reassurance from doctors in Wollongong where she lived at the time, she fell pregnant within six weeks of trying. Much to Matina’s surprise, some of her friends responded to her news by implying she was selfish for wanting to have a child as a disabled woman and this led to losing some friends along the way. Matina carried her baby until being induced at 38 weeks. Although doctors insisted the risks of a natural birth were high, she opted to keep trying naturally and, within just three hours, she gave birth to her son, Ben. Matina admits that it took almost three years to physically and emotionally recover from both the pregnancy and the birth, and this put added pressure on not only her husband, but on how she felt about herself. “It was a really emotional time for me. I don’t have a great deal of hand or
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Eddie, Matina and Ben.
arm mobility. Everything that Ben needed had to be supplied by my husband and additional carers.” Eddie took six months off to assist Matina, but this came with great financial toll. When he returned to work, Matina still needed a lot of help. Today, Ben, now 11, is probably more independent than many other children and, while she is always emotionally available to support him, Matina still finds the additional hurdles of parenting with a disability very hard. “As a parent, I still struggle. I beat myself up. Even though it’s nonsense in so many ways. Psychologically, it’s still one of my biggest battles.” Matina attributes the success of her relationship with Eddie to kindness and supporting one another. “My husband never treats me like I’m different. He’s empathetic and thoughtful. I have got, quite possibly, the best husband in the world,” she says. ■ Being in a relationship myself with someone who is able-bodied, I often think about what my partner must think of a future with me. I am by no means his first serious relationship, but I am the first partner he’s been with who has a disability, and there have been confronting situations when expectation meets reality. I’m keen to know how others in my situation might feel and equally, how an able-bodied person in a relationship with someone with a disability might feel. 12
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Simone, Reggie and Daniel.
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imone Robinson, 37, lives in Sydney, is able-bodied and in a relationship with Daniel, who has cerebral palsy. Simone and Daniel have a two year old son, Reggie, and are expecting their second child together in June, 2017. Simone admits she initially had reservations about the relationship as she is an active woman, who enjoys outdoor activities such as hiking and camping – activities she assumed she could no longer participate in with a physically disabled partner. She says she initially wondered about losing spontaneity, but Daniel’s sense of humour and personality eventually won her over. “There are things more important than hiking. I am always happy around him and always laughing. He has a point of view that is always refreshing and he has never wanted me to be any different,” she says. When Simone and Daniel decided to move in together, looking for a suitable place proved to be difficult. “That was so hard. Even though he can walk upstairs it’s difficult and exhausting for him. We were paying very large amounts of money to live in a one-bedroom apartment that was right for Daniel.” Apart from requiring a place on the ground floor, Daniel doesn’t drive, so they needed to find somewhere close to public transport and a shopping centre. Simone says she knew raising a family as an able-bodied person with a physically disabled partner would be difficult, but didn’t realise how hard it was going to be
until they brought Reggie home. Daniel couldn’t pick up their son and Simone couldn’t leave them alone together until Reggie was crawling and they could babygate their living space. Initially, the longest she was able to leave them for was a couple of hours at a time. But, as Reggie grows older, she’s able to leave them together for a whole day. Now pregnant with their second child, Simone says they are more mindful about planning. She admits she feels like she does the work of a single mother but maintains their family unit is strong. “Reggie has changed Daniel and me as people. It has been difficult, but we’re happy.”
My husband never treats me like I'm different...I have got, quite possibly, the best husband in the world. Simone acknowledges that people’s perceptions when she, Daniel and Reggie are together bothers her more than it should. If they don’t think Daniel’s her partner, they assume he is intellectually disabled, or talk to him like he’s deaf. On a couple of occasions, as he’s pushed their son in a stroller, people have asked him if Reggie is his son, with a look of surprise when he answers yes.
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COVER ◀ continued from page 12 “We’ve had encouragement, too,” Simone points out. When we’re at Bondi, I hold Reggie and Daniel holds my hips for support. People have smiled at us with genuine love and support. It really depends on the environment.” Simone says that people with disabilities have often asked her what she’s doing being with Daniel. “I’m not perfect either. I suffer severe anxiety and it manifests as verbal aggression. Daniel never holds these things against me, so we support one another.” ■ Hmm… I think Simone might be right. Relationships are difficult for people when both are able-bodied, too. I think it’s what each person brings to a partnership that’s important. I have never felt this more intensely than when I met Jessica and Andrew Blair.
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oth in their 60s, Jessica and Andrew live in Maroubra and have been together since 1998. They met at the Gender Centre Ball in Sydney’s inner west and were the first transgender couple in Australia to marry when it was temporarily legal in the early 2000s. Jessica attributes their relationship’s longevity to the strength of their friendship. “Our relationship is built on love and friendship,” she says. Jessica’s spinal disability spans from C3 – S1 and has been deteriorating for the past decade. She has sustained multiple damage to her spine and now uses a power chair to get around; Andrew considers himself to be her carer. Jessica is now also partially blind from a brain tumour, and Andrew is openly committed to being there as they grow older together. Both were raised in rural communities in the 1950s and 60s and share the experience of growing up and realising they were transgender. Jessica says she would cross dress when she was a child, much to the fury of her father who would belt her and force her to sleep on the verandah as punishment. Andrew suffered from epilepsy and, because he hadn’t received the right care, he pushed aside his feelings of gender confusion to deal with his condition. His mother prevented him from telling his father about his feelings and she didn’t accept
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Jessica and Andrew.
or acknowledge Andrew and Jessica’s relationship for many years. Now largely estranged from their families, both Jessica and Andrew find the emotional connection they’ve built is important. At the time they met, Jessica says, she needed a friend. Andrew agrees, joking that because of her full gender reassignment and his partial reassignment, their relationship couldn’t be built on sex! Jessica believes that being married gives their relationship some normalcy in society and they’re pleased with how things have shifted in terms of acceptance for everyone. They share hobbies such as painting and woodwork and love each other’s company. “I’d hate to lose him,” says Jessica laughing. Writing this article and listening to how open and honest everyone has been in sharing their lives and experiences was touching. It filled me with positivity about disability and relationships, giving me a sense of confidence in myself and my own disability, my partner, and the kind of future we can look forward to together. ■
Be part of something Big in 2016... The Big Day Off is the fun and unique new way for all of us to get behind a great cause.
The Big Day Off is as easy as 1, 2, 3!
Longing for a day off work? Here is your chance... All you need to do is register your business (or nominate your boss to register) and offer a day/s off for staff to win. Staff can then buy as many tickets as they like in a raffle to score a paid day off work – it’s that simple.
Step 1
Step 2
Step 3
Register your business or nominate your boss at bigdayoff.org
The business offers a day or days off for staff to win, and staff buy tickets in the draw
On July 1st the winner will get an email letting them know they won a Big Day Off work
Visit bigdayoff.org to find out how It all takes place online and 100% of the profits go to Australian spinal cord injury support and research charities.
bigdayoff.org /BigDayOffAus 1800 819 775 info@bigdayoff.org /BigDayOffAus @thebigdayoff @BigDayOffAus www.scia.org.au
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TRIBUTE Shirley Carpenter, Information and Resources Manager, Spinal Cord Injuries Australia
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his is an obituary that I would rather not be, and never imagined I would be, writing at this time. Joan Hume, Spinal Cord Injuries Australia’s President, disability advocate extraordinaire, loved by her family and wide network of friends and colleagues alike, tragically passed away after what I’m sure Joan would have thought of as just another routine operation to get through. Joan left us on the 10 March 2017 – way too soon. Joan had a long history of advocating for the rights of people with a disability, dating back to the 1970s when she took on the NSW Department of Education (and won!), and that struggle continued into the 80s and 90s. She had to take a break from her activism for the first ten years of the new millennium to fight a personal battle with leukemia, which of course she was successful in winning, and had only recently stepped back into the limelight to once again take up the cause of advocating for an inclusive and equal society for people with disability. Joan had so many plans for the future and I know that she would be really mad and annoyed that her physical body didn’t make it this time. I know her mind would have been fighting at a million miles an hour, willing her body to get better.
Joan deserves way more space than this page will allow. For that, we are planning to honour her life and legacy in an issue of accord later in the year. For now, I will share a couple of stories about her and what I learnt about, and from her, in the short time that I knew Joan.
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of the poorest, most vulnerable section of the community for the monumental return of five million a year.” When speaking about the Eastern Suburbs Railway demonstration in 1979, she commented, “Our intrepid band of demonstrators braved the wrath of a largely unsympathetic crowd of spectators who jostled and abused us mercilessly. We were screamed at to return to our nursing homes where we belonged and not to spoil the view and fun of the righteous, unimpaired train travellers.” Priceless words. Joan was one tough lady. Last year she was honoured in an exhibition called Grassroots Democracy: the Campaign for Disability Rights at the Museum of Australian Democracy at Eureka in Ballarat and it was to be a big occasion. Twelve leaders of the disability rights movement were to feature, of whom Joan was one. The exhibition launch was to be a grand affair with speeches, a lunch and forum and Joan just had to be there. Flying in and then bussing to Ballarat just wasn’t an option so I suggested to Joan, “Hey what about we drive to Ballarat – a bit of a crazy idea, I know.” Joan replied to my email straight away saying, “Hello Shirley, what a fantastic idea! What a wonderful and exciting offer!” So eventually three of us – Joan, myself and Joan’s carer, Maya – set off on an amazing road trip. We all shared the driving, with Joan doing the first six hours! I only drove for three! We were a tired but happy group when we arrived some 12 hours later. I was so glad that Joan made it to the exhibition and was able to participate in all the events, including the forum where she was a panelist. I could see how special she was to all who knew her there.
I started working at SCIA in December 2009 to look after and develop its library and information resources. I first met Joan a few months later when she asked if I could find information on some of the protests and demonstrations that had occurred over the years, as she was thinking of writing an article on the history of disability activism that might then progress to a book. I thought then that she was a lovely, gently spoken, intelligent and strong woman with so much knowledge about this new world of disability I was being introduced to, and I immediately wanted to get to know her better.
Joan had so much more to do on the disability stage – writing her book, fixing inequality, ending discrimination, educating the ignorant, playing a starring role in our 50th anniversary and who knows what else. I think the best thing we can do is be inspired by her many words, continue her fight, write that book and remember to honour and respect the people who are still here fighting the fight.
At my first meeting with Joan, I learnt that she was the inaugural editor of our magazine accord, originally known as Quad Centre and then Quad Wrangle. Joan had a wonderful way with words. The editorial of the Sept-Oct 1978 issue of Quad Wrangle was about a successful protest in Canberra stopping a highly inequitable tax on the invalid pension allowance going through. Joan wrote, “[this is] antipodean Robin Hood gone mad – plundering the meagre earnings
We hear you Joan and we promise we will do our best. ■
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Joan left us a word of warning: “Do not think that because the NDIS is coming that the disability activist’s job is done. Public transport, buildings, health services and housing are still not universally accessible. There is still much ignorance and discriminatory behaviour towards people with disabilities. It is even more vital today, and into the future, that people with a disability continue their fight for true equality.”
Joan Hume
DAILY LIVING
Relationships and continence: A guide to common issues Despite any continence issues you may have, there is no reason why you can’t maintain healthy relationships with your partner, friends and family. We answer some commonly asked questions that arise about issues that can sometimes feel like a barrier to relationships and intimacy. Gabby Pragnaratne, Clinical Nurse Consultant, Continence Care at Coloplast
Continence
Helpful tips for intimacy
Should I talk about it?
Intimacy is important in your relationship with your partner – find a way of being together that is comfortable and pleasurable for both of you.
We all have our own personal preferences when it comes to sharing private information about ourselves. However, it can be helpful to share some of your problems with others instead of keeping everything to yourself. If you’re a very private person, you may not want to talk about continence with anyone except your spouse or partner. But by telling family and close friends, it may help you to cope with the changes in your life. It might even be a relief to be open about it. When friends and family know about your need to schedule bathroom breaks – and sometimes longer breaks – it gives them the opportunity to be more understanding, supportive and helpful when you’re together. Identify a buddy If you’re heading out with friends or family, it’s helpful if there is someone in your group who you trust enough to talk to about your situation. It means you can feel comfortable with the knowledge that they’ll back you up if you need the driver to make an extra stop or they’ll get things for you that you urgently need. How much should I say? Depending on your relationship, it's not necessary to explain all the physical details to someone you’re not that close to. For many situations, it can be enough to say that you have a condition where you need frequent or planned bathroom visits, or whatever is the case for you.
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Sex begins in your mind. A positive selfimage is the first step to being able to enjoy physical intimacy. To feel that you are desirable is important, even if your body has changed or the way you can have sex has changed. Another important factor is openness with your partner. Talking about your worries and allowing your partner to share their thoughts can help you relax when you’re together. Show or tell them what you like and don’t like. A willingness to experiment helps you think more about what you can do and less about what you can’t. It might even spice up your sex life. For some people, changing to other positions can prevent leaks or pain. People cope with bladder issues when it comes to sex in different ways including: • Laughing about it • Having sex in the shower or bathtub • Connecting intimately in other ways, such as massage • Padding the bed with extra sheets.
Intimacy and continence It hurts when we have sex. What can I do? If you’re experiencing pain during intercourse, you should contact your healthcare professional for advice.
DAILY LIVING I feel very dry. Is this normal? It's common to feel dry in the tissue of your genitalia. Try some water-based lubricant. If you have sore skin, you should see your healthcare professional. I often suffer from urinary tract infections (UTIs), what should I do? Be careful to clean your genital area before and after sex. Drink lots of water afterwards and empty your bladder when you feel the urge to as this will help flush out bacteria. If you continue to get urinary tract infections (UTIs), you should speak to your healthcare professional.
worry. If you still have concerns, men should try wearing a condom. At the end of the day, sex and intimacy are important parts of a relationship and your bladder issues don’t have to stop you from enjoying a full life. ■For more lifestyle and product support for Intermittent Catheter users, visit bladder. coloplastcare.com.au for details on the Coloplast Care program.
I'm pregnant. Can using a catheter harm my baby? Catheterisation will not harm the baby at any stage of your pregnancy. I worry about leakage. How can I prepare? If you use intermittent catheterisation just before having sex, you should not need to
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www.scia.org.au 19
POLICY & ADVOCACY
Squeaky Wheel
Contributors:
Greg Killeen, Senior Policy and Advocacy Officer (pictured above), has been working with Spinal Cord Injuries Australia (SCIA) since July 1991, initially as an Information Officer before joining the Policy and Advocacy team in 2009. He is also actively involved in a number of community, disability and government advisory committees as an individual or as a representative of SCIA.
Tony Jones (pictured above) has been working with Spinal Cord Injuries Australia (SCIA) for five years as a Policy and Advocacy Officer. Until recently, he also spent three years working as a Researcher and Policy Adviser to NSW Parliamentarian Jan Barham MLC. He has a degree in communications, and enjoys making a positive contribution to improving the quality of life for people with a disability.
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Transport issues dominate the spotlight The systemic advocacy spotlight is focusing on various transport related issues including National Disability Insurance Scheme (NDIS) individual transport funding packages, reviews of federal government Mobility Allowance legislation and state government taxi subsidy scheme eligibility, and state government transport regulations.
Transport eligibility under the NDIS The NDIS rollout aims to provide reasonable and necessary support for about 460,000 eligible participants to pursue their goals and aspirations and enhance their opportunity to contribute to the social and economic life of Australia. Transport plays a vital role in these goals and opportunities, particularly as many people with disability are transport disadvantaged. It’s therefore very disappointing for SCIA’s Policy and Advocacy (P&A) team to discover a number of state governments have removed eligibility for the Taxi Subsidy Transport Scheme (TTSS) from people with disability when they transition to the NDIS. This may result in many NDIS participants being socially and financially worse off, which is completely unexpected and totally opposite to what the NDIS was expected to deliver. Transport needs under the NDIS are assessed in relation to a participant’s NDS Plan and then allocated as one of three levels of NDIS individual transport funding packages. The highest level is equal to the highest level of the two tier Centrelink Mobility Allowance of approximately $3456.00 per annum. However, many people with disability rely on taxis, with some totally reliant on wheelchair accessible taxis as their only accessible transport option. Because this is a relatively expensive option, it is the reason why the state governments introduced taxi subsidy schemes. Many people with disability use these, together with the Federal Government’s Mobility Allowance, to cover the cost of taxi transport.
Furthermore, NDIS participants may have various other transport needs not funded by the NDIS, including shopping, visiting family or friends, doctors, dentists and other health and medical appointments. Unfortunately, the high cost of taxi transport for people with disability is one of the major deterrents to them seeking and/or maintaining employment, education, training and volunteering. It also has the knock on effect of minimising their social inclusion and participation. As the NDIS is a national scheme aimed at providing equitable services across Australia, SCIA's P&A team believes the decision by some state governments – namely Tasmania, South Australia, Victoria and Queensland – to withdraw taxi subsidies is simply an attempt to shift taxi transport costs onto the NDIS and is not in the spirit of the scheme. However, on a positive note, SCIA P&A team met with Andrew Constance MP, NSW Transport Minister, in mid-February this year. The Minister confirmed that the NSW Government is not withdrawing the TTSS from NDIS participants in that state. SCIA P&A has been advocating for other state governments to reverse their decisions and has written to Christian Porter MP, Federal Minister for Social Services, and as Chair of the Disability Reform Council. SCIA P&A has also raised this issue and sought support from the National Disability Insurance Agency (NDIA) and other disability advocacy and community organisations. If those state governments won’t reinstate TTSS eligibility, SCIA's P&A team will be asking the NDIA to increase the NDIS participant’s individual transport funding packages to ensure they are adequate to meet their needs.
Mobility Allowance review Separate to some state governments withdrawing their TTSS, the federal government is currently reviewing the Mobility Allowance to align eligibility with the NDIS. Currently sitting before the federal parliament is the Social Services Legislation Amendment (Transition Mobility Allowance to the National Disability Insurance Scheme) Bill 2016.
Squeaky Wheel
POLICY & ADVOCACY
The Mobility Allowance, a two-tiered Centrelink payment to assist with transport costs for people with disability who are working, studying or volunteering, also includes the provision of a Health Care Card if recipients are ineligible for the Disability Support Pension Concession Card. The Health Care Card enables recipients to obtain medication at the pensioner concession rate. If the proposed bill amendments are passed, the Mobility Allowance eligibility criteria will exclude people with disability over 65 years of age, people with less significant disabilities (who would not meet the disability eligibility for the NDIS), and those receiving the Mobility Allowance for volunteering. Current Mobility Allowance recipients will continue receiving payment under the proposed bill amendments. However, if they stop working, studying or volunteering for a short period, they will lose eligibility and be subject to the new Mobility Allowance eligibility requirements. Also, when Mobility Allowance recipients transition to the NDIS, the Mobility Allowance becomes their transport funding package. This package has three funding levels, with the highest being equal to the Mobility Allowance highest level. However, the Mobility Allowance is expected to be phased out by 2020, and as a Health Care Card is linked to this payment, SCIA P&A is trying to clarify if the Health Care Card can be retained. If not, it may result in people having to pay full price for prescription medicines. This would be an unexpected negative outcome from the NDIS, in conjunction with the various state governments withdrawing the taxi transport subsidy schemes. SCIA P&A has contacted many of the federal senators (Australian Labor Party, the Greens and many crossbench parties) asking them not to support the bill, as a significant number of people with disability will be adversely affected by these changes. Additionally, SCIA P&A is a signatory of a joint statement by a diverse partnership whereby the representative disability and community organisations and advocacy services are calling on all federal senators to block the Mobility Allowance Bill.
A brief Senate inquiry was held during October and November 2016 on this Bill and SCIA's P&A team lodged a submission raising these concerns. SCIA's P&A team will provide an update on the outcome of the proposed legislation changes in the next edition of accord.
Uber X Wheelchair Accessible Vehicles SCIA P&A was invited to Uber’s Sydney office in February this year, together with other disability and community representatives, to discuss transport issues for people with disability and to hear about the Newcastle (NSW) pilot of Uber X wheelchair accessible vehicles, known as Uber WAV.
The NSW Government has announced it will be reviewing the taxi driver bonuses and incentives, as well as the TTSS, which may‌result in other accessible transport options and competition that could drive fare prices down.
The Newcastle pilot includes four wheelchair accessible vehicles and six drivers. All drivers received professional training to assist and safely transport people using wheelchairs. The feedback from people with disability using the Uber WAV service has to date been very positive. However, as the TTSS is unable to be used in conjunction with this service, the fares were considered too expensive. The NSW Government has announced it will be reviewing taxi driver/operator bonuses and incentives, as well as the TTSS, which may result in their approving the use of TTSS with other www.scia.org.au 21
POLICY & ADVOCACY
Squeaky Wheel
ridesharing services such as Uber WAV. This may result in other accessible transport options and competition that could drive fare prices down. On the surface, this sounds very positive and SCIA is always supportive of increasing accessible transport options. But, as ridesharing vehicles are privately owned, they currently are not required to be compliant with the Disability Standards for Accessible Public Transport (Standards) minimum allocated space inside the WAV, as wheelchair accessible taxis are required to be.
and comfortably fit inside. Furthermore, passengers using wheelchairs may travel with family, friends and/or carers, but some private WAVs may have an inadequate number of seats.
For people with disability who are transported while remaining in their wheelchairs, it is imperative that if the review recommends that the TTSS be open to other ridesharing transport providers, then privately owned WAVs must be compliant with the Standards minimum allocated space requirements. This will ensure that when the WAV arrives for the booking, the passenger using a wheelchair will be able to safely
Further information about NDIS transport funding packages are available at: www.ndis.gov.au/document/participanttransport-funding-informati
At the time of writing this article, the Government’s Review of Taxi Driver/ Operator Bonuses and Incentives Terms of Reference, and call for submissions hadn’t been released. SCIA P&A aims to share information through the SCIA website and other media when it’s available, and provide an update in the following issues of accord. ■
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50th ANNIVERSARY SPECIAL
Trevor Annetts
From AQA to SCIA: I Trevor Annetts reflects on an eventful journey Susan Wood, Media and Communications Coordinator, Spinal Cord Injuries Australia
n 1966, a group of young people with severe spinal cord injuries (SCI) living in the spinal unit of Sydney’s Prince Henry Hospital (PHH) were informed that because of their disability, they would be gradually transferred to an aged care nursing home when they were ready to leave hospital. With a strong spirit of determination to be independent, and desperate to find an alternative, these six young men, with the help of social worker Garry Garrison and Dr George Burniston, set out to gain the right to live in independent, rather than aged, accommodation. On 4 September 1967, they formed the Australian Quadriplegic Association (AQA). One of AQA’s founding members, Trevor Annetts, reflects on the origins and history of the association that would eventually become today’s Spinal Cord Injuries Australia (SCIA).
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50th ANNIVERSARY SPECIAL
M
y memories of the very early AQA meetings are divided into two groups of people: the older quads and the younger quads. The older quads were John Munday, David Fox, Cecil Murr, Graham Dunne, Peter Harris, Bob McKenzie, Jim McGrath, Stan Wanless, Paul Sorgo, Warren Mowbray and Alan Moore. Tom Clarke, George Mamo, Brian Shirt, John Wenburn, Frits Douven, Ken Wynn and I made up the group of younger quads. At that time, my wife Flo, had returned to work. After quite a few operations for pressure injuries necessitating much travel between PHH in Little Bay and my home in Brighton le Sands, I was given the opportunity to move into Bon Accord, a residential aged care facility at Randwick. A one month trial stay ended up becoming ten years. It suited me because I already knew all the boys at Bon Accord from our time together at PHH, and it was here that we formed AQA in 1967.
Many of our monthly meetings were held on the verandah of Bon Accord. Only a handful of people would join us, but everyone would attend our Annual General Meetings. During those days John Munday, David Fox and Cecil Murr would type appeal letters whilst I’d keep busy helping the others to feed in paper and carbon or place correcting strips into the typewriter. This didn’t feel like work to us as the good times outweighed the bad. We had many Wednesday charity nights where clubs and artists would donate their time and money to AQA, and once a year Randwick Council would allow us to have a door knock appeal. In the early 1970s one of the older quads, Warren Mowbray, was working from home for the Spastic Centre (now the Cerebral Palsy Alliance) when a job came up at their manufacturing enterprise, Centre Industries. He asked me if I was interested in applying, which I did, temporarily leaving AQA.
It was in 1981, whilst still working for Centre Industries, that I met with the Roads and Traffic Authority of New South Wales (now Roads and Maritime Services). They wanted to implement a pilot project recording all location coding for traffic reports. This was so successful that AQA was offered the coding contract, a contract that SCIA still currently manages today. And so, in July 1982, after eight years with Centre Industries, I returned to work at AQA. There were a lot of hardworking people at AQA (now SCIA) and I have a lot of gratitude for its first president, David Fox. Without him the association wouldn’t be what it is today. ■
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www.scia.org.au 25
50th ANNIVERSARY SPECIAL
The next 50 years at SCIA... I
t’s long ago now, but I still remember the night. The memories of 8th September, 2017 will always stay with me. Two years before, on a day that lives in my memory like a recurring dream, I went to work just like I had so many times previously. But this day was like no other. If only I’d gone to work another way; if only the truck driver had seen my car earlier, things might have been different. As it happened, I was rushed to hospital, and after a while was told that I had permanent damage to my spinal cord. That’s a conversation I never thought I’d have. As I lay in rehab, thinking about my future, I came into contact with Spinal Cord Injuries Australia (SCIA). First it was peer support, where someone who’s been injured a while ago comes to talk to you and your family, making the rehab experience a time where you can really start to set some goals for the rest of your life. These guys tell it like it is, but through that they help you to see how others have dealt with being injured, and make you realise it’s just a bump in the road of life. Then I was connected with their employment service, which helped me get back to work with my old company, doing the same work I did before – even though at first the company
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were sceptical that this arrangement could work for them. And after leaving hospital, I became involved in SCIA’s exercise service, NeuroMoves, which really got me in shape for what was to come later. In all the years since then, things have changed so much. My old job was OK for a while after my injury, but I kept thinking about the way SCIA was there for me from the beginning, and the incredible impact that connection had on my life. I wanted to do something for other people who found themselves in my situation. So, after about a year in my old job, I talked to SCIA about joining their peer support service. Fortunately, I qualified, and within a month I was in training to start working with newlyinjured people. This was one of the greatest decisions of my life, and one I’ve never regretted. So here I am now, 50 years later, reflecting on all of this as we get ready for SCIA’s 100th anniversary. I still clearly remember the fantastic celebrations on the night of 8th September 2017, and the recognition of all that the organisation had achieved since 1967. As the President of SCIA now, it’s only natural to think back on all the changes that have occurred in the last 50 years; to make sense of where we’ve come from and how we got to where we are today.
50th ANNIVERSARY SPECIAL
Advances in medical science and technology have been fantastic for people in my situation, and, after a rocky start, the National Disability Insurance Scheme has really helped people to live the life of their choosing. It’s changed perceptions about people living with a disability – so much so that today, the debate has shifted from the needs of people with a disability to other groups in our community who are really doing it tough. No matter how far we’ve come, though, one thing remains the same. People need to know that they are taken seriously, are valued by society, and not treated differently to others because of their circumstances. The world is a much fairer place since the Trumpinspired protectionism and nationalism of the 2020s imploded (with all of the chaos that brought at the time), but we still see discrimination in many forms, even 60 years after the UN Convention. Our organisation will keep fighting until our vision of “a society without barriers for people with spinal cord injury” is fully achieved. ■ SCIA President of 2067
www.scia.org.au 27
REGIONAL ROUND UP
Our regional people Spinal Cord Injuries Australia’s (SCIA) regional team advocates for the rights and entitlements of people with disability living in regional areas. They are committed to creating independence, dignity and unlimited opportunities for people living with spinal cord injury. Our team looks forward to hearing from you. Lee Clark Northern Rivers Shop 27, Alstonville Plaza, Main Street, Alstonville NSW 2477 T: 02 6628 3409 M: 0421 055 992 E: northernrivers@scia.org.au Craig Lees Central West/Mudgee PO Box 1140 Mudgee NSW 2850 T: 02 6372 1892 M: 0413 367 523 E: centralwest@scia.org.au Glenda Hodges New England 20 Murray Street Tamworth NSW 2340 T: 02 6766 6422 M: 0427 257 471 E: newengland@scia.org.au Mel Gorman Illawarra/South Coast Suite B, Level 9, Crown Tower Wollongong Central, 200 Crown Street, Wollongong NSW 2500 T: 02 4225 1366 E: illawarra@scia.org.au
Access a priority for everyone in Tamworth Glenda Hodges, New England
At the beginning of March, Spinal Cord Injuries Australia (SCIA) held a discussion forum with Tamworth Regional Council representatives on the Disability Inclusion Accessibility Plan (DIAP) for Tamworth. Around 20 people attended the local community centre where a wide-ranging and interesting discussion lasting more than three hours took place. Most people who attended along with their carers had spinal cord injuries, and many had a story to tell. Although these were all very different, they all related to access issues that have been systemic in regional areas of New South Wales (NSW). Many of these issues have already been reported to councils but had received little or no response. Questions were asked regarding resolution timeframes or the prospect of interim “band aid measures” but, like many local councils, these issues will have to go to the right departments first. Then, if there is enough funding available, concerns will be prioritised and dealt with in due course. Discussions at the forum also focused on access issues outside the council’s realm in the hope that these on-going concerns would be handed on to the right government department. A major issue for many regional towns is transport, particularly local railway stations that have extremely poor accessibility. Ramp issues have been going on for years with arguments relating to proposed new and upgraded ramps and refurbished platforms that haven't eventuated. State government representatives have made loud and noisy proclamations regarding updates to railways station accessibility but very little has changed. Another issue that will be included in the DIAP is the lack of accessible pre-polling booths. This was a huge issue for people with disabilities in our area during the last major election. People in wheelchairs could not get into the building to vote and it was also unsafe for those with walking frames. Instead, these individuals were expected to vote in the public area in front of the polling booth. Complaints were sent to the body responsible but an inadequate response was received. Hopefully this will never happen again or we will need to escalate our concerns. Although this was the largest discussion group that the speakers and DIAP organisers had presented to date, the response from the audience was enthusiastic and definitely came from those who are trying to live in an inclusive and accessible society.
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REGIONAL ROUND UP Wollongong selected for new pilot project on accessibility Mel Gorman, Illawarra/South Coast
New service for people with disability to assist with domestic violence A ground-breaking state-wide initiative has been approved to immediately assist Victorian women and/or children with disabilities experiencing family violence who require immediate disability support. The program has passed its pilot stage and is set to now receive ongoing funding. Funding is available to meet immediate disability-related support needs for a period of up to 12 weeks, to a maximum of $9,000 per person. Requests for funds over $9,000 will be managed on a case by case basis. To access the initiative the woman or her child must:
Over the next couple of months Briometrix, an Australian company that specialises in creating fitness apps and accessibility maps for the wheelchair community, will be undertaking a major project in the Wollongong region to create a new accessibility app, Brio Maps. We were fortunate enough to have Briometrix run a focus group in our Wollongong office. Through working with the community and understanding the needs of wheelchair users, the company has gained many valuable insights in order to create the Briometrix suite of products and services. Briometrix collects data about the wheelchair and its user, combining it with data relating to the local environment. It then uses this information to constantly update and improve the services they offer for the accessibility, sports performance, health and fitness of the wheelchair community. Briometrix has created and is about to deploy: • Accessibility navigation: information that will transform the current accessibility static location maps into navigational maps. •F itness improvement: development of fitness apps and wearable devices which allow individuals to participate in everyday fitness and recreational activities. The company needs the support of the community to download the Brio Map app and help build the data collection. There are strict privacy policies in place, and it’s as simple as leaving the application turned on whilst you go about your daily life.
• Have been assessed through the Common Risk Assessment Framework (CRAF) as requiring “immediate protection” and be supported by, and referred by, a Specialist Family Violence Service. • Have a disability as defined by the Disability Act 2006. • Require specific disability-related support to either access a family violence crisis accommodation response or remain safely in their home or community. The short-term crisis funding can be used for the following purposes: • Attendant care support for disability related needs such as personal care, shopping assistance, meal preparation or support in providing care of children. • Hire of equipment (where own equipment cannot be accessed) or linkage with the State-wide Equipment Program where appropriate. • Sign/Auslan interpreting in cases where the DHS Interpreter service is not available through the credit line. • Transport costs related to disability. The program is designed to complement existing specialist family violence services and supports. For more information during business hours, contact the Disability Family Violence Liaison Officer on 03 9843 6312 or email Disabilityfv@dhs.vic.gov.au. For information after hours, call the Women’s Domestic Violence Crisis Service on 03 9322 3555 or 1800 015 188 (toll free for country callers).
Wollongong has been selected as the location to pilot the project, with assistance from Wollongong University. We’re really excited about the potential of the app and believe it will have a great and positive impact on the lives of people with disabilities. If you are interested to learn more and be involved visit www.briometrix.com and click SIGN UP TO BE PART OF THE BRIO TRIBE. The project cannot succeed without community support so please consider joining. www.scia.org.au 29
REGIONAL ROUND UP Accessible gondolas for bird’s eye view of the peninsula The Arthurs Seat Eagle gondola ride is now running to give visitors of all abilities the chance to take in the Mornington Peninsula from a bird’s eye view. Arthurs Seat is set on a hill above the Peninsula, about 75 km south east of Melbourne, Australia. The Aboriginal Boonwurrung name for the hill is Wonga. Eight fully enclosed-seat gondolas are wheelchair and pram friendly, and carry passengers of all abilities between the base station in Dromana to the summit of Arthurs Seat, with passengers being able to board at either station. The flight takes approximately 15 minutes each way to an elevation of 314 metres high at the summit, where everyone can take in the spectacular views of Port Phillip Bay. Holders of a Carers or Companion Card ride for free with their companion. Accessibility features include ramped access throughout the stations and slow moving gondolas that allow level access for wheelchairs, zimmer frames, prams and strollers to board easily. Please note that gondola doors open to a width of 80cm and double prams or oversized wheelchairs may not fit.
Eight fully enclosed-seat gondolas are wheelchair and pram friendly, and carry passengers of all abilities
There are accessible observation decks and level accessible parking will be available for mobility scooters at the base station. However, note that mobility scooters will not be permitted inside the gondola cabins. Accessible toilets and an innovative Changing Places facility are also available. Please visit the Changing Places website at www.changingplaces.org.au if you require more information. Arthur's Seat Eagle gondola, Mornington Peninsula
Return to Work Study The University of Adelaide and PQSA invite job-seekers with a spinal cord injury to participate in an important national research project. Accessing support to re-enter the workforce can be difficult after an injury. We have developed a free, online job-information resource as one way to do this. We are keen to see how well this works. If you are currently seeking work, live in Australia and interested in participating, follow this link: https://www.surveymonkey.com/r/WORK_SCI_2017
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TECHNOLOGY Graeme Smith, Ability Technology
Charging iPhone
Switch needed
iPad Pro vs iPad 2
I have an iPhone 7 and wondered if it is possible to charge the phone without plugging in the charging cable. Currently, I have to rely on others to plug it in, but it would be more convenient if I could do it myself.
I need a system so I can alert my carers in the night if I need help. My respirator makes it impossible for me to call out at night – my voice isn’t strong enough. I know that carer alerts are available, but I need a switch that I can activate when in bed.
I am about to upgrade my current iPad 2 and am considering the big iPad Pro. From an accessibility point of view, are there particular advantages of this model?
The Belkin BoostUp Wireless Charging Pad enables you to charge your phone just by placing it on the pad – no cables are required. However, phones need to be “QI compatible” (a wireless charging standard). The iPhone is not itself QI compatible, although many Android phones are. However you can purchase iPhone cases that are QI compatible, which enables this feature for the iPhone. For example, the Backbone Wireless charging case and the Nillkin Magic Case Wireless Charging Cover.
Unsteady fingers using tablets
You could try switches such as the Head Switch, Chin Switch or Ultimate Switch, but these would all need careful mounting and placement, and this might be a problem for you. Another option you should consider is the Sound Switch Pro, available from Technical Solutions for $248. In their words, “The Sound Switch Pro is specifically designed to operate from the human voice. Electronic hardware and software filters, along with sensitivity adjustment ensure reliable and consistent switch activation.” We tested one in-house recently and were very impressed and have since tested it successfully with several clients. It can be set to respond to virtually any noise a person can make, so may be the ideal solution for you.
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We’ve moved!
is recognised), “Ignore Repeat” (the duration for which multiple touches are treated as a single touch) and “Tap Assistance” (which enables you to activate a “tap” by lifting your finger before a set time period, for either your initial touch location or your final touch location). Some experimentation with these settings can produce helpful results.
I have been using an iPad for several years, but more recently I have increasing weakness in my hands and fingers. I’m running into all kinds of trouble – hitting the wrong keys when typing, doubleclicking when I don’t want to, and opening the wrong applications. It’s becoming very A third option, a bit more radical, would frustrating. Do you have any suggestions? be to shift to an Android or Windows tablet. The reason for this is that these systems support alternative pointing There are a couple of things you can try. devices, such as trackballs and joysticks. First, a stylus might help. The simplest They also have a cursor, which the iPad ones are pen-shaped, and others have doesn’t. You would have more pointing a T-bar. One very interesting one is the options on these devices rather than on Faraday Caduceus, which has flexible your iPad. tubing enabling it to be twisted into various positions – you then only have to move your hand, rather than your fingers. You also don’t have to hold anything. Another option would be to explore the Touch Accommodations, in the Accessibility options. These include “Hold Duration” (the duration you must touch the screen before a touch
We have quite a few clients who are happily using the iPad Pro (12.9”). Some of the advantages noted are, first, its larger size. For many people, this makes it more stable on their laps. Second, the larger screen means the keyboard is also larger. This can make it easier for typing. A third benefit of the iPad Pro is that it has far superior sound quality and volume compared with your model. This makes it much more useful for text-to-speech and even speech output through ACC apps, but also much more enjoyable for music. Finally, it has a higher resolution screen, making it better for viewing and generating graphics and photos. Whether these benefits outweigh the extra cost will depend on your circumstances and intended uses.
By the time you read this, Ability Technology will have re-located to new premises: 12 Emperor Place, Forestville NSW 2087. Our new abode is a house and we plan to set up some home automation equipment on site. If you have any technology related questions contact the Ability Technology team at info@ability.org.au
NDIS CASE STUDY
Navigating the NDIS Fiona Jackson, Head of Marketing and Fundraising, Spinal Cord Injuries Australia
Fabian Blattman works in our Australian Disability Enterprise (ADE), coding traffic accidents and reports in New South Wales. Fabian has C6 quadriplegia and he transitioned into the National Disability Insurance Scheme (NDIS) in December 2016. Here he shares with us his experience.
How did you find the experience transitioning into the NDIS? It was an easy process. I rang the 1800 number to find out how to apply to be a participant. I filled out the form, with my GP doing the “needs” section. Once I submitted it, I received a response within two weeks to say I was eligible. I waited only a short time before a home visit to discuss my plan was arranged. The area coordinator came and talked me through how my plan will work and explained the breakdown into sections of how my allocated funds can be used. My Plan has now been approved. Did you use SCIA’s pre-planning session prior to your planning meeting? I had a face-to-face session with the team at SCIA to draw up a pre-plan.
apply as my age has me not far off from the cut-off and, certainly over the coming years, I am more likely going to need the service of carers. Having strangers coming into my home is a whole new way of living to get used to, too. The benefits so far are that my morning routine takes less time and the housework, such as vacuuming, laundry, and sweeping and mopping the floors gets done for me. Bliss! Do you feel you had the opportunity to think about your goals and what you want out of life prior to your planning session? Yes. My pre-plan meeting with the team at SCIA helped me set out what direction my life is likely to take, and my pre-plan was drafted with those potential changes in mind. ■
Were you pleased with the outcome of your NDIS Plan? Yes, and I have spoken to quite a few people at SCIA who have assured me that my approved plan reflects what NDIS is advertised to do.
The biggest change for me was the fact I hadn’t been the recipient of any care agency previously, as I lived independently. How do you feel about the process and what are your thoughts of the NDIS thus far? I am a pretty patient person so I just let the process roll along and my application was processed without any hiccups. The biggest change for me was the fact I hadn’t been the recipient of any care agency previously, as I lived independently. I was encouraged to
Fabian Blattman
www.scia.org.au 33
LEGAL RIGHTS
Facing separation or divorce? Four important facts you need to know about property settlement. Courtney Barton, Family Lawyer, Slater + Gordon Lawyers
T
he end of a relationship is a difficult time. Whether yours is a marriage or a de facto relationship, once you have made the decision to separate it is important that everyone going through the trials of a split or divorce seeks independent professional advice. And one of the most critical areas to focus your attention on is the settlement of property.
A consent order is an order that both parties have agreed to and the Family Court approves before making the order, to ensure it is just and equitable. A binding financial agreement is an agreement between parties that has not been scrutinised by a court to ensure it is just and equitable. However, the parties must consult with a solicitor to make the agreement valid.
Property issues in family law are those involving the division of assets and liabilities after separation. They are also referred to as financial matters. Under family law, “property” includes many things, not just cash and houses.
3. Why is it important to formalise your property settlement?
1. What is a property settlement?
There are two reasons:
You should talk with your solicitor about the form of agreement that is right for you.
When a marriage or a de facto relationship 1. A consent order and a binding financial agreement are legally binding. ends, the parties should always finalise their financial ties with one another. This This means that if the other party does may involve the transfer of ownership of not comply with the agreement, you real estate, cash, superannuation or other have recourse to the court to enforce property from one party to another. compliance of the agreement. For example, if the matrimonial home is in 2. It finalises your financial relationship joint names, the parties may agree that the with your former partner. house be sold and the proceeds divided. This means that your former partner Alternatively, the parties may agree that cannot make a further property one party receives the house and makes a settlement claim against you. cash payment of some nature to the other party to “buy out” their interest. When you are separating, it is important to obtain legal advice from a solicitor specialising in family law, in order to determine your entitlements.
2. How do I formalise our property settlement? Any agreement reached between you and your former partner should always be formalised (recorded legally). There are two ways of recording a property settlement agreement between two separated parties: 1. A consent order; or a 2. Binding financial agreement. 34 accord magazine
4. Why is it important to organise your property settlement promptly after you separate?
If you do not finalise your property settlement promptly after separation, this means your financial ties with one another have not been severed and you leave yourself open to a property settlement claim being made against you in the future, subject to relevant time limitations. The value of the asset pool is not the date of separation; it is when you make an agreement or when a judge determines your matter. This means that if your superannuation interest increases, or you acquire a new ▶
LEGAL RIGHTS than later so that you can re-establish your financial position without a potential property settlement application hanging over your head in the future. â–
asset or you improve the value of an asset post separation, but prior to a property settlement, it forms part of the property pool to be split between you and your former partner. You should not leave yourself open to your improved superannuation entitlements, or assets acquired or improved by you post separation, forming part of your property settlement.
Courtney Barton is a lawyer at Slater and Gordon Lawyers. For more information visit www.slatergordon.com.au
Equally, if your former partner sells an asset or wastes away funds in the property pool, post separation, and applies the income for their own benefit, the property pool is reduced, therefore reducing your entitlements. This is because the court cannot deal with assets that no longer exist. The only caveat to the above is that the court has discretion to take into account financial contributions of the parties or wastage of matrimonial assets post separation. It is in your best interests to formalise your property settlement sooner rather
Technology n
means
Independence
n
Productivity
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Connection
Where do you start?
www.ability.org.au 02-99079736 Helping you do more www.scia.org.au 35
INFORMATION AND RESOURCES Defiant: A Broken Body Is Not a Broken Person by Janine Shepherd This book chronicles the life of Janine Shepherd, an elite ski racer whose bid to represent Australia in the Olympics was cut short by a tragic accident. Janine shares the practical lessons she has learned and offers hope and encouragement for anyone facing a life challenge. Borrow from the SCIA library or visit: http://bit.ly/defiantbrokenbody From My Chair: The journey to recovery after a traumatic spinal cord injury by Humberto Gurmilán Following a traumatic surfing accident, Beto Gurmilán was left paralysed at the young age of 15. His dreams and hopes were shattered but his will remained intact. Through perseverance and with family support, Gurmilán recovered and has accomplished many of the dreams that at one point seemed so distant. Borrow from the SCIA library or visit: http://amzn.to/2nV8H0f Still Standing: when you have every reason to give up, keep going by Kevin Rempel A freestyle motocross accident saw Kevin sustain an injury almost identical to his father Gerry’s, whose fall from a tree stand had left him with paraplegia just four years prior. Two men in the same house dealt with loss in opposite ways. Whilst Kevin was motivated to overcome obstacles, Gerry eventually took his own life. Kevin shares his story of overcoming loss and going on to win an Olympic medal. Borrow it from the SCIA Llibrary or go to: http://bit.ly/stillstandingrempel Never Quit: A story of perseverance and love by Robert Guliani Life has a way of teaching us lessons that we are not ready to learn. For Robert Guliani, an athletic sixteen year old, a simple dive into the ocean left him paralysed. Now at the ripe old age of sixty, he steps back to reflect on a life well lived. Borrow it from the SCIA library or go to: http://amzn.to/2nVorjT Accessible Japan’s Tokyo: All you need to know about travelling to Tokyo with a disability by Josh Grisdale Despite a reputation for not being very accessible, this book takes a look at things to consider before you head to Japan. It includes tips on how to get around on Tokyo’s trains, subways, and buses. It also gives tips on shops, restaurants, and accessible toilets, and includes accessibility reviews for many tourist attractions and a guide to essential Japanese phrases for travellers with disabilities. Borrow it from the SCIA library or go to: http://bit.ly/accesstokyo Not All Superheroes Wear Capes by Quentin Kenihan When Quentin Kenihan was seven, Mike Willesee made a documentary about him. Australians fell in love with his wit, and never-say-die attitude. But there was a dark side to his life. A story of abandonment, drug addiction, dark days and thoughts of suicide. Now 41, he is a filmmaker, stand-up comedian, radio host, actor and film critic; he’s hung out with Angelina, accidentally ripped Jennifer Lopez’s dress, talked sex with Jean-Claude Van Damme, appeared in Mad Max and interviewed Julia Gillard, all the while showing that living in a wheelchair doesn’t mean staying still. Borrow it from the SCIA library or go to: http://bit.ly/quentinsuperhero
These publications and resources are available for loan or download from the Spinal Cord Injuries Australia SCI Resources and Knowledge Library. To borrow, visit library.scia. org.au, or contact us at info@scia.org.au or 1800 819 775. In addition to the library and a comprehensive range of information on our website, SCIA offers help and advice to people with a spinal cord injury and similar disability, their families and carers through their Information Services. SCIA can be contacted at info@scia.org.au or on 1800 819 775. 36 accord magazine
REVIEW
Sailing out to sea and beyond The Jubilee Sailing Trust was founded with a vision to change the way society perceives the ability of people with disabilities and to help break down related prejudices and misunderstandings. Two purpose-built, accessible tall ships, the Lord Nelson and the Tenacious, sail around the globe opening doors for people regardless of physical ability. Susan Wood writes about her experience on board the Tenacious in Sydney Harbour.
T
he word “accessible” is one of those words that means different things to different people. Sometimes a building can technically be wheelchair accessible, but the bathroom is at the bottom of a flight of stairs. Or a venue may be accessible, but be at the back of a building, fenced off from wheelchair users. They couldn’t make it any clearer how separate you are from everyone else. So, when the word accessible is used in conjunction with sailing, there is a feeling of hesitation about how that will translate into real life. The Jubilee Sailing Trust is a one-of-a-kind organisation that has built two custom designed tall ships, the Lord Nelson and the Tenacious, both of which are accessible for wheelchairs, and which also offer aids for the visually impaired, including braille signage. I, and another staff member, Rebecca, boarded the Tenacious. It rapidly became all too clear that I was extremely overdressed. I needed to find a Target immediately to buy at least one casual clothing outfit. I was wearing a fascinator! It was ridiculous. As soon as we boarded it was clear that accessibility was a main factor in the ship’s design. There were lifts to the main deck, to the hull and the bow – incredibly surprising for a wheelchair user to not only have that many lifts to choose from, but to realise that they gave access to every location on the ship itself. I managed to get onto the bow by myself and hung onto the ropes over some choppy waves. Looking first back at the ship and then forward at the water felt really freeing. Even more surprising was discovering that there are six wheelchair accessible bathrooms on board. Six! The Tenacious is fully equipped for a long voyage for manual chair users, including eight sets of spacious living quarters. The importance of inclusion is emphasised by pairing up someone with a disability with an able-bodied passenger for both long and short voyages, as well as for their sleeping quarters, giving them a chance to work on the vessel side by side, throwing off the stigma
and hesitation from both parties. More often than not there is a subconscious assumption that there will be a task that isn’t possible for someone with a disability to complete and that sitting that out would be a given. But not on this ship. The crew will teach everyone the literal ropes, expecting each person to assist in activities from turning the mast to releasing the sails. Ordinarily on longer trips, someone in a wheelchair would be given the opportunity to be hoisted up the mast to the crow’s nest. But on day trips such as ours, it was Rebecca who climbed the rig while I steered the ship out of Sydney Harbour. The day sail option is fully catered for and includes all meals from breakfast to afternoon tea, with all food entirely prepared on the ship. Eating inside the bow or out on deck are both options, but Sydney was so beautiful that day, it would have been a shame to eat indoors. My only regret is that I didn’t take any antinausea tablets before sailing because I spent a long time staring out at the horizon trying to hold it together. By chance, a woman on their volunteer crew had some in her stash that helped me make it safely through the on board afternoon tasks. The warm atmosphere of everyone on the Tenacious and the way the crew went out of their way to make everybody feel necessary to the voyage made the whole experience really special, leaving me feeling elated and keen to return. ■ For further information on sailing on one of the Jubilee Sailing Trust’s ships, visit: www.jst.org.uk/australia/
www.scia.org.au 37
CALENDAR
Events INDUSTRY MAY 17 - 18 May 2017 Live Work Play NSW: The State of Inclusion. NSW Family & Community Services. http://bit.ly/LWP_NSW 24 May 2017 ATSA Independent Living Expo Royal International Convention Centre, Brisbane, Qld.
SCIA’s NDIS Info sessions These sessions will cover both general information about the NDIS and specific information for people with spinal cord injury (SCI) and other physical disability to help them with the planning process. For more information on locations, visit: scia.org.au/ndis-scia-information-sessions
atsaindependentlivingexpo.com.au/
MAY JULY 19 - 21 July 2017 Occupational Therapy Australia 27th National Conference & Exhibition. Perth, WA. http://bit.ly/occtherapy27conf
15 May 2017: U lladulla 11.00am – 12.30pm Nowra 2:00pm – 3:30pm 16 May 2017: Maroubra 2:00pm – 3:30pm 18 May 2017: Gymea 11:00am – 12:30pm 18 May 2017: Ryde 2:00pm – 3:30pm 23 May 2017: Port Macquarie 11:00am – 12:30pm 24 May 2017: Coffs Harbour 11:00am – 12:30pm
AUGUST 14 - 15 August 2017
25 May 2017: Ballina / Lismore 11:00am – 12:30pm 29 May 2017: Croydon 2:00pm – 3:30pm
JUNE
Home Modifications Australia National Conference and Exhibition. ANZ Stadium, Sydney Olympic Park, Sydney NSW
1 June 2017: Belmore 11.00am – 12.30pm
moda2017.org.au
5 June 2017: Bathurst 1:00pm – 2:30pm
2 June 2017: Little Bay 2:00pm – 3:30pm 6 June 2017: Mudgee 1:00pm – 2:30pm
NOVEMBER 6 - 12 November 2017 Spinal Cord Injury Awareness Week sciaw.com.au
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7 June 2017: Dubbo 1:00pm – 2:30pm 8 June 2017: Young 1:00pm – 2:30pm
MEMBER PROFILE
Throwing society the challenge From accident to advocacy, Emily James is on a mission to make the world a more inclusive place. Susan Wood, Media and Communications Coordinator, Spinal Cord Injuries Australia
S
itting in a semi-renovated garage in North Sydney, Emily and her mother, Rachel, reflect on Emily’s disability and society’s perception of what it means to be a disabled person. Based on her lived experience, and her work for SCIA in peer support, Emily decided to study psychology specifically to help people with spinal cord injuries (SCI) and give them an opportunity to engage in therapy with someone who had also experienced a life changing experience.
to believing it’s possible to live a full life. “What active work you had before doesn’t necessarily have to be eliminated, it will just be different,” she says. “You shouldn’t be limited by what you did in your earlier life. You have to take it from another aspect.”
Emily hopes to finish her psychology degree, establish her practice and start a family. She says relationships have changed for her since sustaining her SCI and emotional connections are now more important for her. She says embarking on a new relationship hasn’t been “You’re at your very worst in rehab. You get without hesitation and she has found herself lumped into the category of being a C5 and questioning how to expose a new partner told this is what you need. But no one ever asks, ‘When you go home, what do you need?’” to issues that will arise, how to approach intimacy and how much sharing is too much? Emily says she took it upon herself to become as socially independent as possible In 2016 Emily tried online dating – and frequently goes to concerts and out successfully! Confidence and being upfront socialising with her friends and family. She about her disability was key. “I made a promise to myself at the beginning of last firmly believes that people with disabilities need to grasp opportunities and take chances. year that I wanted to go on four dates with someone, so I put up a profile on Tinder. However, looking for employment was one One waist up and one with my wheelchair,” of the harder aspects of adjusting to such a she says. “Someone responded and we met dramatic life change. for coffee. I was a little scared at first, I The realities of being in a working thought it was going to be an hour and an environment for someone with a disability hour turned into three. Those four dates dawned on her as she began applying for went by so quickly”. jobs. From rehab, she started volunteering in marketing at the zoo, but after she started Emily wants to see an actively inclusive studying at Sydney University she realised society that genuinely wants to see less she wanted to take another path. “Whilst I of “us” and “them”. And, one day, even was looking, I was really struggling to find an Olympics that run side by side with something that would be appropriate,” she the Paralympics. “Why can’t you just admits. A constant concern was whether she have the Olympics? Class A: Able Bodied, Class B: Incomplete, and should even mention her wheelchair at all. so on. You can still have divisions She really had to reassess the roles she was without having to divide,” she applying for. Not solely based on her ability maintains. to do the job, but whether she would be accepted at all. “I think there is just so much Emily emphasises the importance of working potential. I think it comes as one of her key aspirational goals. “You from us, as individuals, to meet many different people. Being supportive get into the community and is difficult to define, but getting out there you start making it the norm.” ■ find you have an enormous amount of people on hand ready to help.” Emily notes that transitioning is incredibly hard for some, especially when it comes
Emily James
www.scia.org.au 39
SOCIAL MEDIA
AgriAbility Australia is a network of more than 60 farmers with a disability that helps with everything from machinery modification to coping in the bush.
This young couple has made an announcement: “It still works!”
Innovative and exciting technology called TEK Robotic Mobilisation Device by Matia Robotics
A huge congratulations to Australian of the Year, Alan Mackay-Sim, a leading global authority on nasal cells and how they can help people with spinal cord injury. He hopes to use this honour in 2017 to raise awareness of spinal cord injuries and research into rare brain diseases - we’re right there with you Professor Mackay-Sim!
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10-11 May 2017 Sydney Showground, Sydney Olympic Park 24 May 2017 Royal International Convention Centre, RNA Showgrounds Brisbane
Your choice, Your control On display will be the latest in assistive technology, aids and equipment, as well as options for mobility, communication, travel services and lifestyle options. The Independent Living Expo is an event that welcomes all those involved in ensuring better outcomes for people with disability of all ages. The Expo is of interest for everyone, whether a consumer, care giver, allied health practitioner, equipment funder or support organisation.
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