Inform Magazine Issue 27 - Autumn 2019

Page 1

YOUR HEALTH

NDIS FEATURE

COVER FEATURE

Malnutrition

How to include the arts in your plan

Weaving a new direction


Inform is Independence Australia’s crossdisability magazine. We encourage readers to submit suitable content for consideration by Independence Australia. All correspondence of this nature should be directed to: inform@iagroup.org.au While every effort has been made to ensure the accuracy of the information in this publication, Independence Australia assumes no responsibility for errors or omissions of any consequences of reliance in this publication. The opinions expressed in this publication do not necessarily represent the views of Independence Australia. Medical information included is not intended to be a substitute for professional advice.

ABN 80 973 805 243 Building 1, 9 Ashley Street West Footscray VIC 3012

Your NDIS journey of care starts here The National Disability Insurance Scheme (NDIS) is a new way to provide support for Australians with a disability, their families and carers.

CORE SUPPORTS

Daily activities: In-home & in the community. Consumables & continence products.

CAPACITY BUILDING

Therapy, skills development & co-ordination of support.

CAPITAL & ASSISTIVE TECHNOLOGY

Household aids & mobility equipment.

As a leading service provider, our dedicated team of co-ordinators are here to support your journey to the NDIS. We’ve got you covered with a wide range of products, equipment, services and supports for your NDIS package, all from our one organisation. STEP 1. Preparing your plan.

STEP 2. Developing your plan.

STEP 3. Getting your plan approved by the NDIA.

STEP 4. Choosing your providers and implementing your plan.

inform@iagroup.org.au www.independenceaustralia.com independenceaus independenceaus

Visit independenceaustralia.com/ndis to learn more about the NDIS and how it affects you.

STEP 5. Reviewing your plan.


Welcome

informonline.org.au

contents ISSUE #27

4

Make your move In this issue of Inform we celebrate the art of movement, and the personal significance it has for everyone. In our feature story we explore the world of disability dance and physical theatre with Weave Movement Theatre, and chat to its co-founder Janice Florence. We follow the history of this unique company and look at why it is important to break down preconceptions and misconceptions about disability. Also in this issue we chat to Ryan, a wheelchair user who offers his advice on how to best plan a night out. In this article Ryan addresses the challenges many wheelchair users face when going out, and offers creative ways to break the habit of ‘staying in’. We are also excited to share with you that we have recently launched our new website, InformOnline. org.au – a national information hub for people with disabilities. Launched last month, InformOnline is your one stop shop for disability information with articles and contributors from all over the country. To find out more visit www.informonline.org.au The Inform team is committed to bringing you quality, informative content wherever you are in Australia, so we encourage you to get in touch with us if you have a story of independence to share. You can reach the team at inform@iagroup.org.au

Alison Crowe

4

Feature: Weaving a new direction

10

NDIS Feature: Transport Funding

12

NDIS Feature: How to include the arts in your plan

14

We've Got This

17

Introducing Inform Online

19

Hitting the town

22

Getting the ball rolling

26

Do your own research

28

Could you be suffering from malnutrition?

Managing Editor: Alison Crowe Deputy Editor: Kirby Fenwick Design: Mark Lovatt Cover Story Photography: Meredith O'Shea

3


4

informonline.org.au

Feature


Feature

informonline.org.au

Weaving a new direction In May, Weave Movement Theatre performed at the ButohOut! Festival at Abbotsford Convent. Co-founded by Janice Florence, Weave is one of the only disability-led dance and physical theatre companies in Australia and this year marks twenty-two years of performances.

Pics: Meredith O'Shea

5


6

informonline.org.au

Feature

I

t’s a Sunday morning in Melbourne and the air is laced with a crispness that points to the changing seasons. As the sun climbs into the sky, members of Weave Movement Theatre, one of the country’s only disability-led inclusive dance and physical theatre companies, gather in a workroom at Siteworks in Brunswick. Tables and chairs that give some hint of the building’s former life as a school are pushed to the edges of the room, revealing a timber floor dotted with scuff marks from decades of use. In early May, Weave Movement Theatre performed at the ButohOUT! Festival at the Abbotsford Convent. Their performance was part of an ongoing collaboration with acclaimed Japanese-Australian artist Yumi Umiumare, the only Japanese Butoh dancer in the country. Umiumare is absent today (she’s leading a weekend workshop as part of the festival) so Weave’s co-founder and artistic director, Janice Florence leads rehearsal. Today, the group will run through various elements of their performance. Originally called the Dance of Darkness, Butoh’s genesis is in 1950s post-war Japan so it’s not surprising that there is a sombre mood to the form. Words like dark and grotesque are often used to describe Butoh, but this year’s festival challenged that by asking if the audience can laugh at Butoh. The festival explored the theme Forbidden Laughter and focused on surreal comedy. Humour is a reoccurring theme for Weave. The company’s work has been described as possessing a signature style of ‘absurd humour’, a description that Florence embraces. ‘Well that’s my sense of humour,’ she says, laughing, ‘[and] it seems to strike a chord with people in Weave.’ ‘I think it’s also tuning into a sort of reaction that you have to the situation of having a disability, in a way. Sometimes I call it cosmic humour, because you’re confronted with this

world that has attitudes towards you and sometimes all you can do is laugh.’ But Florence believes that humour is also a way to subvert traditional disability themes. ‘I think I’m sort of rebelling against that in a way, you know: oh, it’s miserable, it’s horrible, oh god. But you know, that’s a burden for us to carry in a way. We don’t want to go around feeling miserable all the time. So, it’s a bit of a reaction against that and a way of coping with the world, too.’ Traditionally, the relationship between art and disability has hinged on art being a form of therapy and while Florence believes that in many ways art is a form of therapy for everyone, the company works to emphasise that they’re artists and they’re making art. Weave Movement Theatre was founded in 1997 following a series of workshops and masterclasses arranged by Arts Access Victoria with the visiting British inclusive dance company 'Can Do Co', Florence was invited to teach the workshops and after they wrapped up, the group were keen to continue and wanted to perform.


Feature

informonline.org.au

7

The company’s work has been described as possessing a signature style of ‘absurd humour’

Last year, Weave celebrated its twenty-first birthday with a retrospective photographic exhibition supported by the City of Melbourne. The company has worked with a range of national and international artists, including Sally Smith and Michelle Heaven, collaborations that have offered important opportunities for Weave members. ‘People with disabilities find it really hard to get into training institutions in the performing arts and having artists come in, well-known, respected dance artists, theatre artists coming in, to teach and to direct things has been like a training ground,’ Florence said. But the collaborations also serve to provide training for the artists working with Weave. Florence likes to think that the artists who work with the company are influenced to think about the way they work and encouraged to do more inclusive work. The arts have long been a part of Florence’s life. She studied ballet as a child and was a voracious reader. After university, she

became involved in community theatre but felt something was missing when she was on stage. She enrolled in the graduate diploma of movement and dance at Melbourne University and became interested in a range of dance forms. Florence credits this training and the many classes she took both at home in Australia and overseas to assisting her when she acquired a spinal injury after an accident. ‘I found my own mode of expression in dance…I sort of came home to enjoying things my body could do and not feeling I had to be a certain size and shape and just taking on the joy of movement more,'


8

informonline.org.au

Feature

I found my own mode of expression in dance…

and to prompts. The performance is taking shape and the energy in the room vibrates with excitement. As rehearsal wraps up, the group lingers, discussing costuming and the finer details of their part in the upcoming festival.

she said. ‘And I think when I acquired my disability that was with me and I sort of actually took it with me into rehab.’

As the company enters its twenty-second year, what it does off stage is as important as what it does on. Florence believes being disability-led sets Weave apart and she hopes that the work the company does will change perceptions of people with disabilities.

‘[The] dance forms that I’d been working with, you could be very exploratory and so I was, and people, friends who taught and so forth, took me back into their classes. So, I could really explore ways that I could now work with those dance forms.’

‘People have such an attitude, that people with disabilities can’t lead, that they always have to be led by someone else,' she said. ‘[It’s] important to change people’s perceptions.’

For the uninitiated, the kind of contemporary dance and theatre Weave produces can appear to have no rules. But Florence says the opposite is true. ‘Improvisational forms have their own little guidelines that you work within. And actually, the guidelines are so essential to helping you to make work,’ Florence says, describing Weave’s work as poetic. ‘They’re movement based and sort of visual based, they have text as well, but they don’t necessarily have a narrative, a conventional narrative.’

Weave Movement Theatre also run workshops that provide a way for people with and without disabilities to explore improvisation, drama and movement exercises. For more information contact info@weavemovementtheatre.com.au or visit www.weavemovementtheatre.com.au

Back in the rehearsal room in Brunswick, sunlight streams through the windows that line the external wall of the building. The members of Weave move through the space, responding to each other, to music


9

informonline.org.au

Featured Products

Be Unstoppable with the iD Comfy Junior Range! Night and daytime wetting can affect your child’s confidence. iD wants to provide more than just absorbent underwear, it wants to motivate children to take the next step and overcome the problem. Your child can feel confident as they will no longer be wetting the bed. iD Comfy Junior believes that children should feel unstoppable and strives to give children confidence so they can carry on with their normal active lives as soon as possible. By wearing the iD Comfy Junior range, your child will not feel like they are wearing a baby diaper because iD Comfy Junior pants look just like real underwear. A Complete solution for children’s night and daytime wetting problems, iD has designed Comfy Junior pants which look and feel like real underwear, but provide optimal absorption. This range also offers an extra small slip to offer a complete solution.

iD Comfy Junior provides: ✓✓ Security - Urine absorbing zone right where it is needed for both boys and girls ✓✓ Comfort - Elastic underwear to ensure a perfect fit and ideal comfort ✓✓ Discretion - Does not make noise thanks to its soft textile-like material. A discreet underwear design that can be worn comfortably under normal clothes Be Unstoppable and try the NEW iD Comfy Junior today! StockCode

Stock Description

Absorbancy ISO/Total

Piece per Bag

15320415

ID COMFY JUNIOR SLIP XSMALL 40-70CM

1550mls

14

15320420

ID COMFY JUNIOR PANTS 17 - 27KG 4-7 YRS

1150mls

14

15320425

ID COMFY JUNIOR PANTS 24 - 47KG 8-15 yrs

1325mls

14

To place your order visit:

store.independenceaustralia.com


10

informonline.org.au

NDIS Feature

IS SERIES ND

TR

ANSPOR

T

Transport Funding Transport is an important aspect of our daily lives. It’s much more than simply a way to get from home to work or to school. Access to transport provides access to our communities. It means freedom and independence and often creates opportunities to spend time with friends, earn an income or further our education. That’s why it’s worthwhile to take the time to learn about NDIS transport funding and how you can get the most out of it.

A core support Transport is an NDIS support category that falls under Core Supports. You may be able to access funding through the NDIS for transport assistance if you’re unable to use public transport without substantial difficulty because of your disability. To receive transport funding, you’ll need to show how funding would help you meet your goals. Transport funding does not include coverage for transport assistance for family or carers. If you received a Mobility Allowance prior to coming onboard with the NDIS, eligibility for Mobility Allowance will cease as this will now be covered in your NDIS plan. There are three levels of support for transport assistance: • Level 1 - The NDIS provides up to $1,606 per year if you are not working, studying or attending day programs but are seeking to enhance your community access.


NDIS Feature

Level 2 - The NDIS will provide up to $2,472 per year if you are currently working or studying part-time (up to 15 hours a week), participating in day programs and for other social, recreational or leisure activities. Level 3 - The NDIS will provide up to $3,456 per year if you are currently looking for work or working or studying at least 15 hours a week, and are unable to use public transport because of your disability. Exceptional circumstances: you may receive higher funding if you have either general or funded supports in your plan to enable your participation in employment.

What are the other funding options? The transport support category is not the only way you can access transport related funding through the NDIS. You may be eligible to include additional support in your NDIS plan by utilising other support categories under Core, Capacity and Capital supports. Under the Core support category assistance with social and community participation, you may be eligible for funding to support you to engage with your community. For example, support to travel to an art class or to play sport. Under the Capacity building support category improved daily living, you may be eligible for funding for public transport training or driving lessons. And, finally, under the Capital support category assistive technology, you may be eligible for a specialised vehicle or vehicle modifications.

Many public transport operators offer free or reduced fare travel alongside companion cards that provide free travel.

informonline.org.au

11

What else is available? If you’re not eligible for transport funding through your NDIS plan, and even if you are, there are other transport options that are worth investigating. Many public transport operators offer free or reduced fare travel alongside companion cards that provide free travel. Contact your local operator to see what is available. Some local service providers or community organisations offer free bus services. Reach out to the providers or organisations in your area and find out what options are available. New South Wales, Queensland and Victoria offer Taxi Subsidy Schemes that subsidise the cost of travel if your disability prevents you from using public transport. Applications for the scheme can be made through the relevant state government. Plan ahead If you’d like to include transport funding in your plan or you’d like to access support through one of the other related support categories, ensure you discuss it in your planning meeting and be clear about why you want support and how it will help you meet your goals. Will public transport training help you apply for a job? Or maybe playing sport or attending an art class helps you engage with your community? Spend some time thinking about the ways transport funding could help you meet your goals and actively participate in your community. Talk to your family and friends about the supports that you might need and then take that information into your planning meeting. Accessing transport funding, whether you need public transport training, support to travel to your sporting commitments or vehicle modifications, can be complex. Understanding and navigating the options isn’t always easy. And because everyone’s circumstances are different, there’s no one approach to transport funding. But with a little planning, you could soon be hitting the road.


12

informonline.org.au

NDIS Feature

How to include the arts in your plan


NDIS Feature

informonline.org.au

13

The benefits of engaging with the arts are considerable. From the theatre to the gallery, whether you’re on stage or watching from the audience, participating in the arts is good for our general health and wellbeing. And research shows that more and more Australians with a disability are getting involved with the arts. So how can you include art as part of your NDIS plan? Why Art? Art helps us to communicate by providing different avenues through which we can express our imagination and ideas. Art also allows us to exercise the right side of our brain, which is often underutilised in comparison to the left. The right side of our brain is associated with more spontaneous and creative thinking, while the left side is responsible for logical, analytical and organised patterns of thought. Exercising both sides is important! How to include art in your NDIS plan Art and cultural participation are not directly mentioned by the NDIS. But they do align with several NDIS objectives and support categories. These include social and economic participation, choice and control, independence and inclusion, skills development, pathways to employment, and health and wellbeing. Arts Access Victoria provides some tips to help you include the arts in your NDIS plan: • Identify and write a statement about why and how art is important to you • Write down life goals and aspirations that involve creative activities • Identify arts programs, providers and other creative opportunities that interest you • Talk to your informal supports, such as family and friends who know about and support your arts participation • Have a list of existing supports and activities

• •

Think beyond your current supports Be aware that your support team (family, friends, trusted service providers) can attend the planning meeting and help you to advocate for the inclusion of art in your NDIS plan.

Art helps us to communicate by providing different avenues through which we can express our imagination and ideas. Arts Access Victoria also provides a handy planning resource, Art and You: A Planning Guide, which you can find on their website. This guide helps you prepare for your planning meeting and outlines how to talk about the arts in a way that fits with the NDIS. More information There are several organisations across Australia that can help you access art and advocate for inclusion of art in your NDIS plan: Victoria: artsaccess.com.au NSW: aarts.net.au ACT: arts.act.gov.au Queensland: accessarts.org.au Western Australia: dadaa.org.au South Australia: access2arts.org.au National: artsaccessaustralia.org


14

informonline.org.au

Interview

We’ve Got This There are plenty of misconceptions about what is means to parent with a disability. It’s exactly these misconceptions that Eliza Hull wanted to dispel with her series ‘We’ve Got This’ for ABC Radio National. As the inaugural winner of the ABC’s Regional Storyteller Scholarship, Eliza wanted to tell authentic stories of parenting with a disability.


informonline.org.au

Interview

15

I wanted to feel represented, and know what it was going to be like to be a parent with a disability. Can you tell us a little bit about yourself? My name is Eliza Hull, and I am a mother with a physical disability. I live in Castlemaine with my husband Karl, and my four-year-old daughter Isobel. I have a neurological condition, ‘Charcot Marie Tooth’, which affects my nervous system. I am also a singer and songwriter, and have written music for TV, theatre and film. Recently I produced the series ‘We’ve Got This’ for ABC Radio National Life Matters and ABC Life about parenting with a disability. You were the inaugural recipient of the ABC’s Regional Storyteller Scholarship for 2018, can you tell us about that program? The Regional Storyteller Scholarship is an ABC initiative. The scholarship is for an emerging storyteller with a project idea, who has a disability and is rural/regionally located. This year they’re offering two more scholarships, which is fantastic. I believe it’s important for disabled people to share their own stories and ideas, and these scholarships enable that. What inspired the development of 'We've Got This'? When I was pregnant five years ago, I felt unrepresented. In all the stacks of parenting books I was given, there were no mums like me. In fact, there were no parents with disabilities at all. I wanted to feel represented, and know what it was going to be like to be a parent with a disability. ‘We’ve Got This’ is a series which aimed at changing this, by sharing the stories of parents with disabilities in a way that could accurately represent their lives, and didn’t over sensationalise their stories. I wanted to change some of the misconceptions that people have about parenting with a disability. There are still a lot of barriers,

and most come out within the wider society. I believe there is still a societal view that parents with disabilities can’t look after children. This is especially the case for parents with intellectual disabilities. I wanted to show that parents with disabilities are successfully parenting, in fact they’re actually thriving. What has the response to 'We've Got This' been like? It’s been overwhelming. I didn’t realise how much these stories were going to resonate with people. I think it’s a really timely subject, and this is due to the fact that there still isn’t a lot of representation of parents with disabilities out there. My favourite responses have been when people write to me and say that the series changed their perceptions. I remember one email in particular from a lady who said she held the view that parents with intellectual disabilities shouldn’t be allowed to keep their children, and that hearing first-hand from parents with intellectual disabilities she now holds the opposite view and believes that we should support parents with intellectual disabilities to keep their children. This was incredible, seeing this kind of change happen. It’s been incredible to have such a huge amount of support from other media organisations as well, including the BBC and Channel 9’s The Today Show, who have both asked for interviews in regard to the series. What did you want listeners to get from the series? I want listeners to gain a greater understanding of what it means to be a parent with a disability. I want them to be challenged, and gain a different perspective. Parents with disabilities are successfully parenting, I hope these stories will show that.


16

informonline.org.au

Interview

Podcast Recommendations Ouch: Disability Talk

Ouch: Disability Talk is hosted by the BBC. It has gone through a number of iterations, but with more than 150 episodes in its back catalogue, Ouch: Disability Talk is a treasure trove of information and stories from the disability communities.

Abnormally Funny People

How important is it that people with disabilities have the space to tell their own stories in their own words? It’s incredibly important. It’s the only way we will be able to change the misconceptions that still exist of what it means to be disabled. It enables the chance for stereotypes to be eliminated instead of reinforced. What was the experience of producing 'We've Got This' like for you? The experience was life changing. That may sound dramatic, but it’s actually completely honest. It enabled me to learn more about myself as a disabled woman, and parent and gave me such invaluable skills and experience. I felt very empowered by the ABC to make the series that I had envisioned and for that I am very grateful. Also, I made lifelong friends with the other parents that I interviewed so that is a bonus! And, finally, do you have any podcast recommendations? • Alice Wong’s Disability Invisibility Podcast • BBC Ouch Disability Podcast • I love listening to Oprah Super Soul podcast (I can’t believe I am admitting to this) • Radio National Life Matters You can find 'We've Got This' wherever you listen to podcasts or on the ABC Radio National Life Matters website.

Abnormally Funny People is a group of standup comedians of all abilities based in the UK. Hosts Simon Minty and Steve Best, along with a rotating cast of guests, review ‘disability products’. Most are awful, some are useful, and all are hilarious. It’s mostly created for comedy purposes, but occasionally they hit upon a genuinely useful item, so there’s every chance you’ll also find it informative.

The Accessible Stall

In this chat show best friends and hosts Kyle Khachadurian and Emily Landau discuss all things disability, from the accessibility issues they’ve faced to whether that Nike ad is awesome representation or #inspoporn. The episodes are often peppered with their own funny stories, and they don’t hold back. As hosts they’re both smart, funny and they have great chemistry. This one is definitely worth a listen.

Alice Wong’s Disability Invisibility Podcast

Hosted by Alice Wong, the Disability Invisibility podcast is a part of the Disability Visibility Project that seeks to create, share and amplify disability media and culture. The podcast features conversations about topics as diverse as mental health and robotics. Recent episodes include Melbourne’s Carly Findlay, a writer, speaker and appearance activist and a conversation about design with co-founder of The Disabled List, Liz Jackson.

Inform Podcast

Did you know that Inform has a podcast? Released monthly, Inform Podcast is a conversation for people with disabilities, featuring people with disabilities from an Australian perspective. We ask for advice on all the big topics, from finding work to dating, playing sport, navigating the NDIS and more. We also speak with industry experts and other organisations doing good work in the disability space in Australia.


Inform Online

informonline.org.au

Introducing Inform Online We’re excited to share with you InformOnline.org.au – our new disability information hub. Featuring blogs, tips and advice, resources and our podcast episodes, Inform Online is your one stop shop for everything disability. With new articles and resources being uploaded every week, Inform Online aims to provide you with up to date information on a range of topics including accessible travel, work, parenting and what is new across the country. Visit InformOnline.org.au today! Have you got a story you’d like to see featured online? Have you got a tale to tell on our podcast? Let us know at Inform@iagroup.org.au

17


18

Inform Online

informonline.org.au

Highlights from Inform Online Informonline.org.au

Learn

informonline.org.au/learn

Fabulous foods to fight cold and flu

Are you getting enough sleep?

NDIS 101: Managing your funding

These days cold and flu season kicks off at the start of winter and hangs around like an unwanted guest well into spring. But getting sick is not a given. Boosting your diet with nutritious food can do wonders for your immune...

Living with a chronic health condition or physical disability can be stressful, both physically and emotionally, and therefore disruptive to your sleep patterns. The amount and quality of sleep you’re getting contributes to your...

Navigating the NDIS can be daunting, especially if the NDIS marks the first time you or your loved one are accessing supports and services. The Inform Online NDIS 101 series aims to take some of the confusion out of...

Listen

informonline.org.au/listen

EPISODE 04:

WISE Employment

EPISODE 03:

EPISODE 02:

Owning your future

Karen Walker from WISE Employment, a not-for-profit organisation and one of Australia’s leading disability employment services providers, discusses disability employment services.

Jarad McLoughlin offers his advice for other people with disabilities who might be experiencing some stigmatisation and ableism at work.

Starting your own business Robbie Peime offers his advice for other people with disabilities who might be at a cross-roads in their career.


Advice

informonline.org.au

Hitting the town We’ve all done it: made up an excuse or convinced ourselves of a reason not to go out. Maybe it was a colleague’s party, a drink with old schoolmates or coffee with Aunt Mavis. And maybe you’ve come up with creative reasons, telling yourself ‘it might rain’, ‘they won’t notice if I skip it’, and the perennial classic: ‘I’ll go next time’. It’s a habit worth breaking. For one, memorable experiences don’t just knock at your front door. But more than that, getting out can encourage other people to venture out too. And this can only be good. Being visible in our communities does more for disability awareness than you might think. Story: Ryan Smith

19


20

informonline.org.au

Advice

Exploring what’s on offer in your home town is a great way to get a taste of travel and build your confidence. Local micro-travels can lead to day trips which can lead to international voyages. And hitting the streets is less stressful and more rewarding than ever with accessibility becoming better every day. With a bit of preparation, a spirit of adventure and a friend or two you might break a rut and discover a new lust for life. Or at least a decent place for a flat white. So, how to make the next time you leave your place a wild success, gliding along flat, fresh concrete, rolling effortlessly into a cafe that’s generous on space and smiles? Here are a few of my tips:

Be organised There are great resources out there for accessible information. Ask a friend or the disability community for recommendations. Facebook, blogs and websites are great for this. Look for listings or sites with photos so you get an idea of what to expect. Phone ahead and ask questions or even ask staff to send photos. Google street view offers a way to see the streetscape (the date of the image is on the bottom right).

Be open No one is guaranteed a great time every time they leave the house. To get good odds on a great time out, be realistic. Stuff happens. Bring a sense of adventure and a sense of humour. Travel—up the street or around the world—is most rewarding when you open your arms to unexpected experiences. Things can turn from bad to good with a positive attitude and a sense of perspective.

Public transport accessibility is changing constantly so look online for the latest upgrades. Car park information can be found online too. The City of Melbourne has a map showing all the disabled carparks in and around the CDB. Other cities provide similar maps.

Think laterally and solve problems When you’re getting settled, see if you can arrange things to be more accommodating, for you and other patrons. Can you transfer to a high-backed bench-seat and park your wheelchair somewhere safe? Maybe you can fold your walker and put it out of the way? Think laterally and find ways to make your experience issue-free. Other visitors might appreciate it and you’ll feel more comfortable.

Take your time Nothing sours a night out like rushing to get ready or feeling like you’ve forgotten to do something. Don’t stress yourself out. Arrange enough time to cover off what you need to. Have a shower, have a cup of tea, feed your goldfish and water your plants. Organise someone to help. Give yourself time to think about the trip in a positive light, to get comfortable with the idea.

See the familiar anew If you’re heading somewhere you’ve been before, try to see it anew. Imagine you’ve never been there before, what are the noises and smells like? Notice a street name or the detail of the wallpaper. You’ll be surprised what you notice. I roll the same patch most days and still notice new things.


informonline.org.au

Advice

Things can turn from bad to good with a positive attitude and a sense of perspective.

Take the route less travelled If you’re feeling brave, and you’re with friends, you can ‘plan to be spontaneous’. Be curious in an area that you’re not familiar with and get out of your comfort zone. I once wandered into an area I hadn’t visited for years. Meandering around I discovered a great burger place with a bar at waist height I could roll up to. Perfect! May I suggest… If you come across accessibility issues, let someone know. Many councils use Snap Send Solve, a photo app you can use to report issues. If you’re in a venue with accessibility issues, let the manager know, don’t grin and bear it. Remember if management knows about it, they can fix it. Your polite comments might be met with a solution or a fix for the next person like you who visits. Part of accessibility is an attitude. I’ve been to many places that aren’t accessible on paper, yet we’ve found a way to enjoy it thanks to helpful staff or a helpful passerby. I can’t count the amount of times I’ve been hoicked up a step by a helpful passing stranger.

Tell your story Part of the enjoyment of travel is sharing it with friends, either in the moment or in a story later. Take in the experience. Take a photo, draw a picture or write a note. Thank your hosts if they’ve helped you have a good time. How was your experience? Let people in the disability community know. Share it and post a review, this benefits future visitors and the venue. That’s it! Hopefully you’ve found something to keep in mind next time you’re planning to head out. Remember by getting out, being seen and sharing your experience you could be leading the way for someone just like you. As the Dutch proverb goes: ‘He who is out the door has the hardest part of the trip behind him’. Ryan Smith is a wheelchair user and the creator of Freewheel Weekends, a website focused on accessible travel experiences. He has been to Coburg and Copenhagen, Toorak and Tokyo, New Farm and New York. He’s currently planning an approaching trip to Egypt. www.freewheelweekends.com.au/

21


22

informonline.org.au

Interview


informonline.org.au

Interview

23

Getting the ball rolling Radio host, podcaster and footballer, Rosie Jenes does it all. On the eve of her second season in the Robert Rose Victorian Wheelchair Football League, Inform caught up with Rosie to find out what inspired her to pick up a footy and what her advice is for anyone thinking about playing sport. Pics: Meredith O'Shea

Can you tell us a little about yourself? My name is Rosie, I'm 28 and I have Spina Bifida. I am a radio host on a show called "Are you looking at me?" on 3CR 855AM. I am hugely passionate about live music and advocating for more accessible music venues. I have also just started a podcast with my two best friends called "The D Word" where we discuss things like fashion, mental health and sport, from the point of view of three disabled women.

How long have you been playing football for? I started playing football last year, so this is my second year of playing. [Last year, Rosie played for St Kilda, this year she’ll be pulling on the red and black guernsey and playing for Essendon]. Have you played any other sports? Yes. I play tennis and I have also done handcycling.


24

informonline.org.au

Interview

What inspired you to start playing football? When I was overseas doing hand-cycling with Disability Sport and Recreation (DSR), the CEO of DSR was hitting the footy around with another person from one of the footy teams. He told my friend and I all about the wheelchair AFL, so we thought it would be a fun thing to try out. When I did, I didn't realise how much I would love it. Were you a footy fan before you started playing? If not, are you now? My whole family have always been really sporty and loved football. All three of my brothers played it and so did my dad when he was younger. They all go for Essendon except for mum and I who go for the Swans. I however have never been too into sports and never really got the appeal of football. Safe to say I do now. What do you love about playing? I really enjoy the social side of playing football, everyone from every team trains together and we have made some really good bonds. I also really enjoy defending and knowing that I am helping my team. This has been the first team sport I have played so it’s been a really good learning experience working as a team. I also love the adrenaline and how when I play all my stresses of the day go out the window.

You have nothing to lose if you try sport, you may just find you love it. What has your experience been like playing in the VWFL? My experience playing in the VWFL has been a really positive one, I have gained some great skills and have made wonderful friendships. I'm excited to be on the Essendon team and will hopefully be getting some good game time. I think that it’s a great inclusive sport. What would be your advice to someone thinking about playing football or any other sport? My advice is to just go for it, there are so many benefits to playing sport. It improves your health and fitness, it’s a great way to make friends and it’s a really good stress release. You have nothing to lose if you try sport, you may just find you love it.


informonline.org.au

Interview

25

What is the VWFL? The Robert Rose Foundation Victorian Wheelchair Football League (VWFL) launched in 2018 with five teams: the Collingwood Magpies, Hawthorn Hawks, Essendon Bombers, St. Kilda Saints and the Richmond Tigers. The competition is a partnership between the Robert Rose Foundation, AFL Victoria and Disability Support and Recreation.

Games are played on a basketball court divided into thirds: forward, centre, defence.

Teams are made up of five players on-court (two forwards, a centre, two defenders) with no restrictions on the number of players allowed on the bench.

Robert Rose played Australian Rules Football for Collingwood and Footscray in the VFL and cricket for Victoria in the 1970s. He was 22 in 1974 when he became a quadriplegic after a car accident. After his death in 1999, Rose’s family created the Robert Rose Foundation. The foundation works to help people with spinal cord injuries and their families by providing funding for equipment, sporting equipment, home modifications and education.

Games consist of 4 x 10 minutes quarters.

There are designated zones (forward, centre and defence) which dictate where assigned players can play. Players must wear coloured arm bands or sashes depending on their playing position.

There is no kicking. A handball is equivalent to a kick, and a single handed underarm throw is equivalent to a handball.

A goal is worth six points and a behind is worth one point. Only the designated forwards can score, from within the forward third.

In 2019, the Robert Rose Foundation Victorian Wheelchair Football League will again feature five teams, Collingwood, Hawthorn, Essendon, St Kilda and Richmond. The competition will run from May through to September. What are the rules? While many of the traditional rules of Australian Rules Football apply to Wheelchair Football, there are some key differences.

How can I get involved? Wheelchair Australian Rules Football is played around the country. For information on what’s happening in your state, contact Disability Sports Australia on (02) 8736 1221.


26

informonline.org.au

Your health

Do your own research After a diagnosis, just when you need clear answers the most, many of us are thrown into a world of evidence based vs non evidence based therapies, and told to 'do your own research'. An evidence based treatment means there has been research done to show cause and effect. In other words, the treatment has been shown to do what it claims to do. At the highest level, this means the treatment has undergone trials which are randomised, double-blind and placebo controlled (so nobody can fudge the results). The results of research like this are both very accurate and painfully slow.

Most traditional medical professionals will only recommend evidence based treatments, as it would be unethical for them to do otherwise. This can be frustrating if you’re looking for more than what modern medicine can currently provide. It’s worth noting that most medical professionals will not recommend many alternative therapies not only because they have seen patients waste a lot of time and money following these leads, but also because some of them can cause real harm. So, what does it mean to 'do your own research' when your doctor is telling you that a cure doesn’t exist, and an alternative practitioner is claiming to have that very cure? First, try to tune out the noise. Good news stories from alternative practitioners can be very compelling, but it’s important to remember that they are a lot less likely to also give you the bad news stories, where something went wrong. Anecdotal evidence is not good evidence.


Your health

informonline.org.au

27

So, what does it mean to “do your own research” when your doctor is telling you that a cure doesn’t exist, and an alternative practitioner is claiming to have that very cure? Instead, look for a neutral source of information. This can either take the form of talking to both supporters and detractors of the therapy, and listening carefully to what they both have to say, or doing a lot of internet searching, or both. Just remember, you are looking for scientific evidence, not stories of one case where it worked. Next, consider the research behind the therapy. Was the person conducting or funding the research a neutral party, or did they stand to gain a lot of money if the evidence worked in their favour? In other words, is the research biased? Was the sample size (number of people participating in the research) statistically significant, or was it conducted on six healthy adults who don’t even have the condition you are trying to treat? Does any research exist at all? If the answer is that there is no research, or that the research is poor or inconclusive, consider that this means you or your loved one will be acting as a guinea pig for the therapy if you choose to follow it. Is that a risk you are willing to take? Once you know a little bit more about the therapy or treatment, consider the consequences. This means looking at all the possible harm the treatment can do. Think through the worst-case scenario for the therapy. If it doesn’t work, what is the worst that could happen? If you try art therapy and it turns out you don’t enjoy painting, the worst that can happen is you’ve wasted a few afternoons and class fees. In other cases, you may have wasted a lot of money. For those who can afford it, this may be less harmful than for others who truly can’t afford the loss. With some alternative therapies worstcase scenario may be more serious. For example, following a dairy-free diet may seem harmless, but without properly

supplementing the calcium dairy would normally provide, growing children can end up with brittle bones that break far too easily. In the first instance, when thinking about whether to proceed, you should ensure that the therapy will do no harm. This leads to the next point: finding a combination of medical practitioners who you trust, and who are prepared to work with you and with each other. For example, in the case where you are recommended a dairy-free diet, talking to your GP or a dietician will immediately bring to light the possibility of a calcium deficiency, and ensure that you are able to supplement this vital mineral. A doctor may be able to provide information about which essential oils in which doses are poisonous if consumed, or to warn you of the risks of lifelong kidney damage if chelation therapy is undertaken in the wrong way or for the wrong reasons. If you choose to follow alternative therapies that your doctor does not recommend, it can still be helpful to talk to your doctor about ways to conduct that therapy as safely as possible. They may be able to give you new information, or highlight risks and ways to mitigate those risks that you would not have considered on your own. Because of this it is important to find a doctor who will work with you, even if they don’t agree with all your choices. Finally, keep a level head, and remember that if a treatment sounds too good to be true, it probably is. Take your time in making decisions, and weigh up the pros and cons. Remember that the time and money you spend on any treatment is time and money that can’t be spent on holidays, favourite activities or just enjoying a moment of quiet. Think about whether the benefits outweigh all these costs, and always, always do your research.


28

informonline.org.au

Your health

Could you be suffering from malnutrition?

The global obesity epidemic receives a lot of attention. We’ve all heard about the health consequences of an expanding waist line. At the other end of the nutrition spectrum, there is another concern that receives much less media coverage.


Your health

Malnutrition often brings to mind images of drought and famine stricken countries. But the problem of malnutrition is a lot closer to home. In fact, a recent Australian study found just over 40 per cent of communityliving older adults who were receiving home nursing services were either at risk of malnutrition or already malnourished. Malnutrition can have a significant impact on your quality of life. People who are malnourished are more likely to become unwell, and when unwell they take longer to recover and are more likely to suffer complications. People who are malnourished will need to see their GP more often, will need to be admitted to hospital more often and

informonline.org.au

are more likely to need to move into an aged care facility at an earlier stage than someone who is well nourished As we age we become more vulnerable to malnutrition for a number of reasons: • our requirement for a number of nutrients increases, such as protein, calcium and vitamin D • we experience changes in our ability to taste and smell food as we get older. This can mean we no longer get the same enjoyment out of eating as we once did • physical changes can also make it more difficult to buy, prepare, cook, and eat food without help Take this quick quiz to find out if you could be at risk of malnutrition.

29



Depend® Super Unisex Underwear Extra Small Extra small leg opening

Leak Lock System with overnight absorbency and leakage protection

To request a free sample, call 1300 788 855 toll free or fax 1300 788 811.

®/TM Trademarks of Kimberly-Clark Worldwide, Inc. or its affiliates. © KCWW.


Independence Australia is a: NDIS approved provider TAC service provider DHHS service provider

Our services include: In-home care Accommodation Psychology and counselling Case management Support Coordination Information Post polio support Health care products and equipment

1300 704 456 service.enquiry@iagroup.org.au www.independenceaustralia.com.au independenceaust @independenceaus


Issuu converts static files into: digital portfolios, online yearbooks, online catalogs, digital photo albums and more. Sign up and create your flipbook.