Inform Magazine Issue 30 - Autumn 2020 by Independence Australia

FEATURE

NDIS FEATURE

COVER FEATURE

The Secrets of Social Skills

NDIS 101: Supporting Evidence

Living the Dream

N TUM EDIT I AU

2020

Inform is Independence Australiaâ&#x20AC;&#x2122;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.

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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. Weâ&#x20AC;&#x2122;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.

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

STEP 5. Reviewing your plan.

Welcome

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contents ISSUE #30

Eyes on the prize

Living the Dream

In this issue of Inform we celebrate the hard workers, the people out there every day working at achieving their dreams. In our feature story we catch up with paraathlete Alistair Donohoe who at the time of writing had just received the news that the 2020 Tokyo Paralympics had been postponed due to the COVID-19 pandemic. However, Alistair isnâ&#x20AC;&#x2122;t letting this stop him from achieving his goals, and is more determined than ever to secure gold in 2021. Also in this issue we speak to Andi Snelling, who has taken creative inspiration from her chronic illness to create her award-winning solo theatre work HappyGo-Wrong. This magazine issue will also be our final printed issue. Two years ago we were fortunate enough to receive a grant from the National Disability Insurance Agency which has allowed us to continue to bring you quality printed content, but this grant period has now come to a close. However this is not the end of Inform! We have now moved 100% online, to www.informonline.org.au. Please subscribe today to ensure that you stay up to date with all Inform news. 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

The Secrets of Social Skills

When Simple Changes Matter Most at Work: A JobAccess Story

NDIS 101: Supporting Evidence

Creative Possibilities

Providing Hope

Auslan 101

News

The Science of Sleep

Managing Editor: Alison Crowe Deputy Editor: Kirby Fenwick Design: Sarah Zen Cover Story Photography Supplied by Paralympics Australia

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Feature

Living the Dream

Feature

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Alistair Donohoe had always dreamed of being an elite sportsperson. It’s a dream the World Champion and Paralympic silver medallist lives every day. Inform caught up Alistair to talk about his many career highlights and why there’s still plenty more he wants to achieve.

listair Donohoe has never had a plan b. After multiple world championships and Paralympic medals though, it’s clear the twenty-five-year-old doesn’t need one.

Today, Donohoe is a professional cyclist spending his weeks riding hundreds of kilometres and putting in hours at the gym training for his next race. But eleven years ago, he was an active 14-year-old living with his family in Darwin, dabbling in everything from gymnastics to triathlons. ‘I did triathlon with my parents. They got into that just to keep fit, and I ended up just kind of following suit with them. And then I actually really enjoyed kid’s triathlon. And then more specifically really enjoyed the bike aspect,’ Donohoe told Inform from his Sunshine Coast training base. At the tender age of 12, Donohoe shifted his focus from triathlon to cycling. At the beginning, he did all kinds of cycling from BMX and mountain biking to road and velodrome. But a move to Melbourne to complete high school saw him focus on road and velodrome. ‘The competition in Melbourne is far tougher and there's far more to do. So, I got into the road and velodrome aspect when I was there. And yeah, the rest is kind of history.’ But there’s far more to Donohoe’s story that just that. At 14, while swimming at a local creek in Darwin with friends, Donohoe jumped out of a tree, like he’d done plenty of times before. But this time, he got tangled in the rope. ‘The damage caused from going from falling to a complete stop on the rope severed through 90 per cent of my tricep and 80 per cent my bicep.’ Donohoe says that while many people ask him how he dealt with such an injury at such a young age, he says he was focussed on being a teenager, spending time with his friends and doing what he normally did. ‘I have a vivid memory of being in a wrist brace with a massive swollen arm and going to the local Wednesday night running club with my parents, and just running with my arm across my chest, strapped to my chest.’

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Feature

‘To win once is a great achievement because it takes a lot to win but… to win twice really kind of put a stamp on it.’ Growing up Alistair Donohoe, left, always dreamed of being an elite sportsperson. Image: Supplied.

After months of occupational therapy and burns treatment, Donohoe says the swelling went down and movement in his wrist slowly began to return. ‘Now it looks like I've had a shark take a bite out of my tricep. ‘I was a bit sensitive with my arm in terms of its cosmetic appearance and what people might have thought about it. And I didn't really like to wear singlets because my arm looked funny. By the time I was 18 I was over that. ‘People often ask, how did you deal with it? And I'm like, well, I didn't do anything different. I think I've been pretty blessed in life to have that sort of mentality that when a little bit of adversity comes my way I don't actually end up thinking about it too much, I just kind of have an innate ability to get on with it.’ That kind of thinking and the ability to overcome adversity is certainly a handy attribute to have when you’re a professional athlete. After more than seven years riding professionally, Donohoe has collected an impressive number of highlights. He won two silver medals at the Rio Paralympics, in the individual pursuit and the road time trial. He’s also a World Champion eight times over.

‘I don't want to sound at all blasé, but I've won eight World Championships, so you can't sit there and list eight World Championships as the highlight but I think for me the first one I won was definitely like a massive relief, well not relief, it was ecstatic. ‘I'd finally made it to the top step. And that was definitely a highlight. ‘But I think that actually one of the bigger highlights came the next year, being the defending champion, going into it and having a real target on your back. I won in 2015 again and that, for me, I just felt so much internal pressure going in, being defending champ and you know, tough course and I really, really wanted it and I think to win once is a great achievement because it takes a lot to win but… to win twice really kind of put a stamp on it. ‘Rio Paralympics is another highlight. I had two really good races to win silver twice. I had one unfortunate race but that just added fuel to fire.’ The unfortunate race Donohoe speaks of was the road race at Rio where he was ridden into the wall and missed out on what was a likely gold medal.

Feature

While the postponing of the Tokyo Paralympics will push back Donohoe’s pursuit of a gold medal it’s not changing his training schedule. He started his preparation in October last year and doesn’t plan to take a breather. ‘The fact that the games are postponed now, I'm not upset with that because that gives me an extra year to improve as a cyclist and to work on the goals that I want to work on. Because cycling is a compounding sport, the more training you do the better you get so in years’ time, I'll be a year better than I am right now.

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‘One, you have to be really big, really powerful, really explosive and the other, you have to be able to go really hard for 100 kilometres. So one's completely endurance and one's completely anaerobic.’ It’s a challenge but it’s one Donohoe thrives on. ‘I really like thinking about the approaches and addressing the training and figuring out the puzzle. And then seeing the differences.’

‘Going into the preparation of it is, is like a rabbit hole of everything. We've been working on aerodynamics a lot, we've been working on my physiology.

For now, Donohoe will continue with his training, spending between 25 and 30 hours a week in the gym and on his bike. He’ll ride anywhere from 650 to 800 kilometres in a week, breaking up the kilometres of road with some riding on dirt roads and mountain biking to keep himself mentally fresh.

It’s a more complex preparation for Donohoe because of the two very different types of events he races in at the Paralympics.

Despite his impressive list of achievements, Donohoe still has plenty he wants to achieve, with a Paralympic gold medal at the top of the list.

‘I'm training for a four-and-a-half-minute event in the first week of the games, and then a two hour event in the last week of the games, so that's the challenge of Tokyo because each World Championships I go to, I get to specialise and focus on the event that I'm competing in at that World Championships and the demands of that event, whereas Tokyo, a good analogy is I have to be a good 800 metre runner and a good marathon runner.

‘That's something I should have won and didn't win and that's a real redemption point for me. It's unfulfilled. And I can't wait to be given the opportunity to go back and achieve that goal.

‘I can't wait to be given the opportunity to go back and achieve that goal.’

‘The sky's the limit there. There's always competitions and events and different levels that you can get to. But I just love cycling.

‘Not saying that it's going to come at Tokyo, hopefully it does, but there's always a chance it doesn't so if it doesn't, I'll just look towards Paris. But I would like to think that I don't stop until I get that gold. And then I mean, the world of professional cycling is so vast.

‘So, it's not about what level of competition I get to or tick off. It's about racing my bike and I think that's something I'll do hopefully, for many, many more years or at least until I get bored of it.’ Editor’s note: the 2020 Tokyo Paralympic Games have been rescheduled to 2021.

Despite his impressive list of accomplishments, there's still plenty more Alistair Donohoe wants to achieve, with a gold medal at the top of that list. Image: Supplied.

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Feature

Australian Paralympian Legends Daphne Hilton

Daphne Hilton became a paraplegic after a horse-riding accident when she was 17. She would go on to be one of the most accomplished Australian athletes of all time. Hilton was the only woman in the 1960 Australian Paralympics team. Australia won ten medals in 1960 and six of them were Hilton’s. She won two gold medals in swimming, three silver in archery and athletics and bronze for shot put.

Above: Daphne Hilton in 1964.

Kevin Coombs OAM

More medals would follow at the 1964 and 1968 Paralympics. Across the three games, Hilton set a record that is unlikely to ever be broken. She won 14 medals in five different sports—athletics, swimming, archery, table tennis and fencing—across three Paralympic Games. An incredible feat.

Kevin Coombs’ contribution to raising the profile of athletes with a disability makes him an all-time great. Coombs’ was the first Indigenous athlete to represent Australia at either a Paralympics or an Olympics. He played wheelchair basketball at five Paralympic Games. He was captain of the Australian men’s wheelchair basketball team in 1972 and 1984 and he was captain of the Australian Paralympic Team in 1980. In 2016 Paralympics Australia created a special award named in his honour: the Uncle Kevin Coombs Medal for the Spirit of the Games Award.

Above: Kevin Coombs OAM at the 1960 Paralympics opening ceremony.

Louise Sauvage OAM

Bursting onto the world stage at just 16, it was clear from the beginning that Louise Sauvage was going to be a star. Sauvage won nine gold medals and four silver medals at four Paralympic games between 1992 and 2004. At the 1996 Atlanta Paralympic Games, she won four gold medals and broke two world records. Sauvage changed wheelchair racing forever. She dominated the sport for more than decade and in doing so raised the profile of Paralympic athletes around Australia and the world. More than that, as one of the first professional athletes with a disability, Sauvage changed public perceptions of Paralympic sport and athletes.

Above: Louise Sauvage OAM in action.

Feature

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EIF HISTOR BR

Left: The 1964 Australian Paralympic team is addressed by George Bedbrook.

The beginning of the Paralympics as we know them today can be traced to one man and one hospital. Dr Ludwig Guttman and the Stoke Mandeville Hospital. In 1944, during WWII, the British Government asked Dr Guttman to open a centre for people with spinal injuries. Guttman believed strongly in rehabilitation for people with spinal injuries and in the possibility of integration with the wider community. One of the ways Guttman pursued rehabilition for people with spinal injuries was sport. In 1948, he took it one step further. On July 29th, as the Opening Ceremony of the London Olympic Games was taking place, Guttman organised a competition for wheelchair athletes at the hospital. He called them the Stoke Mandeville Games. In these first games, 16 men and women took part. Four years later, in 1952, Dutch ex-serviceman joined, and the Stoke Mandeville Games became the International Stoke Mandeville Games which, by 1960, would be the Paralympics. The 1960 Rome Paralympics were the first Paralympic Games. There were 400 athletes from 23 countries competing and the games were no longer just for war veterans. The development and expansion of the games continued. By the 1976 games, the Paralympics were open to all athletes with disabilities, not just those using wheelchairs. In 1976, 1600 athletes for 40 countries competed.

The History of the Paralympics

LY M P I C S

Australiaâ&#x20AC;&#x2122;s involvement with the Paralympics is thanks to one man: Sir George Bedbrook. Bedbrook studied medicine at Melbourne University in Victoria. After graduating, he travelled to England where he spent some time at the Stoke Mandeville Hospital studying under Sir Ludwig Guttman. Back in Australia, and no doubt inspired by Guttman, Bedbrook established Australiaâ&#x20AC;&#x2122;s first spinal injury centre in Perth in 1954. There, he revolutionised the treatment of spinal injuries in Australia. He included sport and exercise as part of rehabilitation programs for people with spinal injuries and held hospital sports day. In 1960, it was Bedbrook who arranged for an Australian team to go to the first Paralympics. Later, he would serve as the Team Leader and Medical Officer for the 1964 Paralympic Games in Toyko. From humble beginnings with only 16 athletes in 1948, the Rio Paralympics in 2016 featured 4342 athletes from 159 countries. They competed in 528 events across 22 sports. Below: Dr Ludwig Guttman with Dr Yutaka Nakamura. Both men were influential in the development of the Paralympics.

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Feature

The Secrets of Social Skills The Secret Agents Society is an innovative program helping children to learn about and develop social and emotional skills. Inform caught up with experienced Autistic Spectrum Disorder consultant, teacher and trainer Sarah Hampton to learn more about the program. Walkie talkies, secret codes and spy missions are just some of the tools the Secret Agents Society uses to help children with autism to develop their social and emotional skills. An evidence-based, multimedia program, the Secret Agents Society is aimed at children aged between 8 and 12. The program uses a combination of computer games and interactive sessions that involve a range of different games, including cooperative games, that are designed to develop social and emotional skills. Sarah Hampton, who runs Autism Consultancy Services, has been running Secret Agents Society groups since 2018 and says that while it doesn’t work for everyone, for those it does work for it ‘really does make a difference’. ‘I’ve had moments where a student with autism looks up and me and goes “Oh, I get it now. That’s why they do that”. It’s really amazing,’ Ms Hampton said.

Secret Agents Society works to help children with autism — as well as children with anxiety disorders, ADHD, anger management difficulties and other undiagnosed challenges with team work, making friends or staying calm — to learn about social interaction. ‘The world we live in is not black and white. At all,’ Ms Hampton said. ‘The world we live in is entirely dependent on social interaction. ‘The purpose [of the Secret Agents Society program] is to teach children about social interaction and to teach them how to socially interact. ‘We’re constantly encouraging them to be curious about people and it’s that curiosity that helps us to understand social interaction.

‘The world we live in is entirely dependent on social interaction.’

Feature

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‘It’s all about creating young people that are productive and have the capacity to be able to go to work or to school, go to university and just generally engage with the world,’ Ms Hampton said.

Serren said that Tegan often has trouble reading body language, recognising emotions in others and maintaining reciprocal social interactions, but that the Secret Agents Society had made a difference to her social skills.

A number of university and community trials have already proven the effectiveness of the program which was developed by Dr Renae Beaumont and last year celebrated its tenth birthday.

‘She's definitely got a better idea of reading body language and non-verbal signals from people by their expressions or their body language of how they are feeling or responding to her or the situation that they are all in,’ Serren said.

According to the Secret Agent Society website, the program can build capacity in a range of different areas, including:

‘So she's a lot better at picking up those signals. Which has made life a lot easier for her as well.

•

The ability to recognise emotions in themselves and in others

•

The ability to express their feelings and to cope with anger and anxiety

‘It was taught in a way Tegan really enjoyed, very interactive classes where they did lots of activities. It's not like a lecture. They were using walkie talkies and whispering across rooms and making paper airplanes and playing with slime.

•

The ability to communicate and play with their peers

‘She looked forward to going, which to us was really positive,’ Serren said.

•

The ability to build and maintain friendships

•

The ability to cope with mistakes and to understand the difference between accidents and jokes

Children doing the Secret Agents Society program receive a pack that includes a parent’s resource book, a teacher’s resource book, and a resource book for the children. They also receive a wallet of social stories about how to join a conversation, how to make friends and what to do if you need help. All of this is alongside a login for an online computer game which aims to teach children about facial expressions, how others may react and also about their own feelings and responses. Nine-year-old Tegan, who is diagnosed level two ASD and ADHD, took part in the program last year in a group organised by Ms Hampton. ‘[Tegan’s] psychologist and her paediatrician both recommended the Secret Agent Society as a good introduction to the unwritten rules of social interaction that the rest of us just kind of absorb and learn,’ Tegan's mother, Serren explained. ‘That's why we decided to do the course.’

Sarah Hampton is an experienced Autistic Spectrum Disorder consultant, teacher and trainer who runs Autism Consultancy Services. You can find more information about the Secret Agents Society programs Autism Consultancy Services run here: www.autismconsultancy.com.au You can find more information about the Secret Agents Society here: www.sst-institute.net

Secret Agents Society and the NDIS It is possible to get funding for the Secret Agents Society through the NDIS. The program supports children in their social and emotional goals as well as being a capacity building program. Some of the areas in which the Secret Agents Society builds capacity include: • Improved daily living skills • Community participation • Improved relationships

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Feature

When Simple Changes Matter Most At Work To deliver nothing but the best matters the most to Shane when it comes to doing his job. But a progressive loss in central vision meant his ability and confidence to perform were impacted and he needed support to continue at work. That’s where JobAccess comes in.

For Shane Somerville, providing support and value to his clients and employer at the highest possible level is exceptionally vital. As the head of managed services at audiotechnology provider Insight Systems, Shane is directly responsible for managing highvalue accounts and maintaining customer relationships. His role sees him regularly interact with clients and suppliers, secure new business, manage customer contracts, deliver presentations to internal and external stakeholders, as well as travel interstate and overseas to source new technology. Developing and sustaining long-term partnerships are critical as it translates into high revenue. For Shane, it’s more than that. ‘Making a difference to our clients’ environment, so their customers are happy, means a lot to me,’ he says. ‘I enjoy working with people and ensuring their outcomes are best met.’ Senior HR advisor Cornelia Szeszeran adds, ‘Shane has established great working connections with our clients and productive relationships with our internal teams based onsite and offsite.’

Over recent years, Shane developed Cone Dystrophy and progressively lost his central vision. It impacted his ability to perform some core components of his role. ‘What we take for granted is reading and reviewing information so easily. Losing the ability to read affected my confidence,’ Shane explains. ‘Not being able to read the agenda or presentations during meetings meant my contribution was being compromised. It resulted in a level of frustration and anxiety and impacted my participation. I wasn’t able to put my best foot forward.’ Cornelia recounts, ‘When Shane shared his access requirements in a one-to-one meeting, I sensed the considerable challenge and stress he was experiencing. He loves his job and wanted to keep working at the same level of proficiency but needed support to do so.’ Shane learnt about JobAccess from a low-vision consultant at an open day, who recommended he contact the service. ‘The result has been nothing short of amazing!’

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Right: Shane Somerville using the technology JobAccess provided funding for. Image: JobAccess.

With the support of his employer, Shane applied for the Employment Assistance Fund through JobAccess. Upon receiving the application, JobAccess organised a free workplace assessment to help identify and recommend simple modifications. ‘The JobAccess adviser who oversaw my case was very responsive and understanding. From the point of having a conversation to something rocking up at the workplace, the turnaround time was swift,’ Shane says. Cornelia affirms, ‘There was a genuine sense of excitement when JobAccess responded so promptly. There was no challenge in working with them, and they were so compassionate and professional. Our excitement kept building as we saw the application process progress so quickly!’

‘I also use it during presentations where the OrCam reads the slide notes to me. The best part is no one else can hear that, and I can deliver the presentation more naturally. Before the OrCam, these tasks were simply out of reach and caused much anxiety and stress, as I found it challenging to present to groups and not be able to read.’

Through JobAccess, Shane received funding for a ClearView Speech Magnifier which reads all types of text, a portable OrCam reader with wireless bluetooth-enabled earbuds, and a large monitor for his home office when working offsite.

Cornelia explains, ‘It’s wonderful to see Shane in his true spirit with renewed confidence. You can notice it when he is interacting with people around him. He feels reassured that he can continue performing his job as he had before.

‘The ClearView Magnifier is fantastic as it helps me quickly and efficiently read and review contracts, tenders and other reports. Its touchscreen functionality allows me to navigate complex documents easily and skip to parts I need to assess. Reading documents was almost impossible, but now I can complete these tasks without having to ask others.’

‘It’s hard to understand the impact when we lose the subtleties in how we do our job. Shane was starting to doubt himself, but the supports from JobAccess have empowered him.

Shane further adds, ‘The OrCam is life-changing! I attach the compact device to my glass frame, and it reads the information to me through a small speaker via a bluetooth earbud. It is ingenious for meetings as I can follow the agenda and read content displayed on screens.

‘It’s hard to understand the impact when we lose the subtleties in how we do our job. Shane was starting to doubt himself, but the supports from JobAccess have empowered him.’

‘One significant change I see in Shane is he has become more comfortable in sharing information about his condition, which is not common. He talks about it more openly now, and we don’t see it as a disability because he doesn’t either,’ Cornelia says. Shane concludes, ‘My concern was I wouldn’t be able to deliver the job in the long term. But these supports have removed my worry and stress, made me more productive and positively impacting the business. ‘The assistance from JobAccess and my management has been remarkable. It’s taken a mental leap to walk up and articulate what the issues are, so I can fully participate in the workplace as a valued member of the organisation. It’s great to have the confidence to say ‘yes, I can do this’ and take back control in every aspect of my work and personal life.’

For more information about JobAccess and the Employment Assistance Fund visit www.jobaccess.gov.au

NDIS Feature

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NDIS 101:

Supporting Evidence

ER S S IES DI

V TIN G E

When you’re applying for access to the NDIS, you may have to provide evidence of your disability. This evidence helps the NDIA to assess your eligibility. It can take several different forms including letters from your GP, assessments or reports from allied health professionals and letters from your support providers, carers or family. Providing this evidence can seem like a daunting process, but we’ve pulled together some information that can help to make it smoother. What is good evidence? The supporting evidence you provide to the NDIA is what they use to decide on your eligibility so it’s important to make sure you provide the best evidence you can. So, what does the NDIA consider good evidence? Good evidence is: •

recent

•

confirms your primary disability

•

is completed by a treating health professional relevant to your primary disability

•

confirms how your disability impacts on various areas of your life

•

includes and describes any previous treatments and the results of those treatments

•

includes and describes any future treatments and the expected results of such treatments

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NDIS Feature

Who can provide evidence? Evidence can take many forms. In terms of health care professionals, some examples include: •

•

Occupational therapist

•

Speech pathologist

•

Physiotherapist

•

Psychologist

•

Orthopaedic surgeon

Depending on your disability, a GP can provide a letter detailing your diagnosis, the impact your disability has on your life and the supports you need. Reports from therapists can include the impact your disability has on your life and recommendations for supports. Assessments are generally conducted by occupational therapists, speech pathologists or psychologists.

Tips and advice

The health professional who provides you with supporting evidence can do so in several ways. They can: •

This is not an exhaustive list. The NDIS provides a list of evidence by disability that can help you to determine who is the best healthcare professional to provide your supporting evidence.

•

Complete the NDIS Supporting Evidence form Complete the NDIS Evidence of Psychosocial Disability form

•

Complete Part F of the Access Request form

•

Provide existing assessments and reports or letters that demonstrate the ways your disability impacts your life

Evidence can also come from letters or reports from support providers, carers or family. While there are no formal guidelines for what these letters or reports look like, some examples of what they could cover include: •

The kind of care and support provided by family

•

The impact that care has on family

•

Whether that family member can continue to provide care

Other forms of evidence can include home modification assessments, mental health reports, and medication charts.

•

The more information you can provide the better

Some useful tools for preparing your supporting evidence include:

•

If you need some additional help in preparing your evidence, speak to your Local Area Coordinator or LAC or your Early Childhood Partner

•

The World Health Organisation’s Disability Assessment Schedule

•

The Australian Mental Health Outcomes and Classification Network’s Life Skills Profile

•

And the Australian Mental Health Outcomes and Classification Network’s Living in the Community Questionnaire

•

The Camberwell Assessment of Need or CAN

•

The NDIS provides a handy tool that lists types of disability and the best supporting evidence to use by type of disability. You can find this list on the NDIS website.

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Feature

Andi Snelling

Creative Possibilities: Andi Snelling on art and disability

Andi Snelling is an award-winning performer, writer and theatre-maker living with Lyme disease and co-infections. Last year, she received an Arts Access Australia Travel Grant to attend Meeting Place, a forum hosted by Arts Access Australia for artists with disability. Andi loves tea, baths and being alive! Her favourite thing to do is smile. Inform caught up with Andi to discuss her work, the importance of forums like Meeting Place and how her disability informs her performances. How did you get into performing? I think I was just always accidentally performing; creating choreographies as a child and making little videos as a teenager. I used to move buttons about on a table as if they were on a stage, creating different formations and patterns. I grew up dancing and always landed the comedy roles.

Although I didnâ&#x20AC;&#x2122;t actually recognise it until I finally went to drama school in my mid-20s, I was clearly always performing in one way or another and it was pretty inevitable that this is where Iâ&#x20AC;&#x2122;d end up. At my recent 20 year high school reunion, no one was surprised to hear my career was acting, even though it surprised me initially!

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Any particularly memorable gigs? So many. I’ve been lucky enough to do such a wide variety of jobs across many different performing genres around the world: from performing in a musical on London’s West End, to playing Edith in Picnic at Hanging Rock for BBC Radio 4 (yes, I got to scream “Mirandaaaaa!”), to performing as Peppa Pig and Dora the Explorer (the only times in my life I’ve been celebrity mobbed by 5-yearolds), to performing on a train in Germany for 3 months, to a recurring role on Neighbours, and being the voice of Qatar Airways' in-flight entertainment and much, much more. Every gig has its quirks. But definitely, the most fulfilling have been my three solo shows: #DearDiary, Déjà Vu (And Other Forms of Knowing) and Happy-Go-Wrong. It’s been quite a ride so far. You were a recipient of an Arts Access Australia Travel Grant to attend Meeting Place, a forum hosted by Arts Access Australia that brings together local, national and international arts and cultural leaders, arts workers and artists with disability, to present, perform, discuss and debate the latest in access and inclusion in the arts. What was the experience of attending Meeting Place like? It was my first time attending Meeting Place and was a highlight of my year last year, without a doubt. The greatest thing it gave me was an instant environment of understanding, acceptance and inclusion like I hadn’t felt before. Having an invisible illness/disability often means people do not take my situation as seriously as it needs to be taken. Meeting Place is a container for shared language, experience and damn good art! I met a lot of very talented artists and arts workers doing great things in our industry. It really spurred me on to take pride in my vastly changed body. A personal highlight for me was being invited to speak on a panel about my solo show Happy-GoWrong and running a workshop as part of the incredible Crip the Stage program.

‘I found little ways to get back to creating and eventually, these little ways culminated in what is now my award-winning solo theatre work’

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Why are events like Meeting Place important for cultural leaders, arts workers and artists with disability? Because they are safe spaces for us to come together and really nut things out in. Our voices can be truly heard and we can challenge each other too in areas where we may disagree. Disability is diversity incarnated and I find such events continue to wake me up to how differently all human bodies function and where our points of intersection and indeed, diversion lie. I also find these events are often important places for celebration of the incredible experiences and perspectives that artists with disabilities have to offer the world. They also show me that I can achieve much more than I thought I could due to my ongoing illness. How has your experience with chronic illness impacted and/or influenced your work? Having lived most of my life as a healthy, fully abled-bodied performer, there has been a definite transition period for me, in terms of learning how my artistic process can best support the needs of my illness. For several years, I had to stop performing altogether and these were very tough on my psyche. But, slowly but surely, I found little ways to get back to creating and eventually, these little ways culminated in what is now my award-winning solo theatre work Happy-Go-Wrong. What has surprised me most through all this has been how much my illness ‘limitations’ have, in fact, become new creative possibilities which I otherwise would not have discovered. I also believe I have a lot more depth and integrity in what I create; every word, every movement and every breath counts now like never before. On the flip side, the reality is that I still often struggle to accept my circumstances and face tremendous barriers as an artist more so now, both physically and especially, financially. The majority of my life is still spent treating and managing Lyme disease and I sometimes despair that I may never be able to make the amount of art I wish to and in the ways I wish to. It’s a constant, ongoing obstacle course which I pull myself through and I try to keep reminding myself that what I have managed to achieve under such trying circumstances has been pretty incredible so far. I have a lot of hope.

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‘...the process of creating the show, as well as the show itself, has ended up playing a huge role in me turning my life around from the ground up. Art is powerful like that.’ Can you tell us about your 2019 Melbourne Fringe Festival Show, Happy-Go-Wrong? Happy-Go-Wrong is a solo physical theatre odyssey which is a celebration of being alive. It explores my journey through Lyme disease using clowning, dancing, storytelling and a lot of verbal and visual metaphor. It is a deeply raw and personal show, but with universal themes of fate, mortality and resilience, which all humans experience to varying degrees. The show premiered at Melbourne Fringe 2019, where it had a fully sold-out run and encore season and won an award. This was a powerful way to return to the stage for the first time in many years. The show has also been nominated for two Green Room Awards for Best Performer and Best Writing in the independent theatre category for 2019, which has very much blown my socks off. I have also just returned from New Zealand Fringe 2020, where the show enjoyed beautiful full houses and won another award. My dream is to continue working on the show and touring it as far and wide as possible, as best as my health allows.

What inspired Happy-Go-Wrong? My need to rescue myself from the darkest depths of despair during a time when it felt like my life was over due to Lyme disease. What has resulted is that the process of creating the show, as well as the show itself, has ended up playing a huge role in me turning my life around from the ground up. Art is powerful like that. I am very proud of what I have achieved as there was a lot of struggle along the way and the show very nearly didn’t happen many times over. What are you working on next? I am someone who is pretty much constantly creatively inspired so I have at least 10 show ideas swirling around my head! But, for now, I will continue to focus on HappyGo-Wrong in terms of my theatre work. I do also have a book in the pipelines, which is a delightfully slow-burn project, something which my illness experience has taught me to embrace. I also hope to get back to doing plays again in the near future.

All images supplied. You can learn more about Andi and her work at www.andisnelling.com

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Providing Hope Founded more than forty years ago, the Prader-Willi Syndrome Association of Victoria has a long history of advocacy, awareness, education and support. One that they continue to build on today, creating new support networks and working to raise awareness of the rare and complex Prader-Willi Syndrome. The Prader-Willi Syndrome Association of Victoria is running an awareness campaign this May to shine a spotlight in the challenges faced by people living with Prader-Willi Syndrome. The campaign, called 15 for 15, will see participants take part in a 15-hour hunger challenge. ‘It's about people challenging themselves for something for 15 days,’ said Renee Di Genova, President of the Prader-Willi Syndrome Association of Victoria. One of the tell-tale signs of Prader-Willi Syndrome is hyperphagia or an insatiable hunger. ‘The International Prader-Willi Syndrome Organisation describes it as like a starvation syndrome, where you just constantly feel like you're starving.’ Ms Di Genova said. ‘Last year, we had people cooking only orange foods for 15 days. We had people doing gym challenges for 15 days. But this year we're honing in on the hunger side of it. We're challenging people to do a 15-hour hunger challenge and to upload videos about how they’re feeling during that time. ‘One of our board members did the 15-hour challenge. And he uploaded a couple of videos about how he felt during that time. Not only hungry, but the anxiety and the focus on food and feeling fuzzy and those thoughts and feelings that our children and adults experience every single day all the time.’

Prader-Willi Syndrome is a rare and complex lifelong condition with no known cure. It’s also difficult to describe succinctly what the condition is. Some common characteristics include small hands and feet, small stature, low lean body mass, weak muscles, insatiable hunger, obesity and anxiety-driven behavioural outbursts. ‘It's extremely complex. It's not just one thing. And that's the thing with Prader-Willi Syndrome that people find so hard to get their head around the fact that it is such a complex condition and it just can't be summarized,’ Ms Di Genova The Prader Willi Syndrome Association of Victoria was established in 1978 when a group of seven families with family members diagnosed with Prader-Willi came together to talk about the challenges they were facing. Ms Di Genova explains that the original goals of the association were to support those living with Prader-Willi Syndrome and their families, to raise awareness of the syndrome, to educate professionals and to grow the membership of the association.

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‘There wasn't enough information out there. There wasn't enough support for these families and they just wanted to do something to help people in their situation,’ Ms Di Genova said. Many of the goals of the original families are reflected in the work of the Prader-Willi Syndrome Association of Victoria today. ‘We do advocacy, awareness, education and support. And that's on the ground support. So, we do educational workshops to families— which is something that we provide ourselves— and that's about Prader-Willi Syndrome and how to handle certain behaviours and what to expect and things like that. We also provide education to professional organizations such as schools, day care programs, group homes and things like that to talk about how best they can support someone with Prader-Willi Syndrome.’ Ms Di Genova said. In addition, the association advocate to local governments and federal government and collaborate on research projects. They’re also launching a dedicated telephone counselling service that will be available to families and those with Prader-Willi Syndrome, for support, including financial support. They also provide peer-to-peer support events such as their Christmas party, family days and an annual camp, which is the associations biggest event of the year. ‘We run it a little bit different to other camps that are out there. We involve the whole family unit. It's not just the person with Prader-Willi Syndrome.

Below: The 2019 Prader-Willi Syndrome Association of Victoria Christmas Party. Image: Supplied.

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‘The camp is designed to be inclusive… but it's also around support for the family. We provide educational pieces to the family as well by professionals, so there'll be guest speakers every day that come in and talk. Last year we had a gut health specialist. We also had a person from Carers Victoria come and talk to the families about looking after themselves. ‘And it's for all age ranges we have. I went when my son was one-and-a-half. And we have adults there that come every year that are in their 40s.’ For the Prader-Willi Syndrome Association of Victoria, the goal is a world where people with Prader-Willi Syndrome live a full and inclusive life. ‘When we talk about full, we're talking about a really full life. That they can be included in everything and anything they want to be. They can have every opportunity that everyone else has afforded to them. That’s what we are trying to achieve. ‘We try and provide hope to families that are just feeling really hopeless in their journey. Anything that we can provide to them that can help them along, that's what we do. ‘Obviously as a family, just finding out about Prader-Willi Syndrome can be extremely daunting, and you read a lot of messages online and it's very negative. But we can provide some hope and let them know that it's not all doom and gloom. Our kids are just so resilient and they bring us so much joy and yes, it's challenging, but it's such an amazing thing to see them grow and achieve.’ For more information on the Prader-Willi Syndrome Association of Victoria or the 15 for 15 campaign, visit pwsavic.org.au

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AUSLAN 101 Auslan is short for Australian Sign Language. Sign language is a visual type of communication that uses hand, arm and body movements to express meaning. Uniquely Australia, Auslan was recognised by the Australian Government as an official language in 1991.

Auslan has a long history in Australia. It wasn’t invented by any one person but instead has grown and developed via the community and in response to those who use it. However, its origins can be traced to sign languages brought to Australia in the 19th century. Auslan evolved from early forms of British Sign Language used in the 1800s. Irish Sign Language also had some influence on the development of Auslan. Today, nearly 20,000 people use Auslan every day. And the language has developed some uniquely Australian characteristics.

Sign language possesses the same kind of complexity as spoken language and can convey and express nuance and subtlety. However, Auslan is not just English using signs but its own unique visual language. In fact, Auslan uses a variety of elements to convey meaning. From the handshapes—there are 38 major hand shapes with 28 variants—to the location of the signs in relation to the body, head, arm and hand movements, the orientation of the sign and facial expression.

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There are many ways you can learn Auslan. Some community organisations offer classes, check locally. Many further education or TAFE institutions also offer opportunities to learn Auslan. For more information, you can contact the following organisations:

â&#x20AC;&#x2DC;Sign language possesses the same kind of complexity as spoken language and can convey and express nuance and subtlety.â&#x20AC;&#x2122;

Above: Auslan fingerspelling signs. Image: Sign Language Forum.

Expression Australia formally Victorian Deaf Society Telephone: (03) 9473 1111 TTY: (03) 9473 1199 Telephone: (03) 9473 1186 (Sign Language Co-ordinator) Website: www.expression.com.au Deaf Australia Sydney Office Telephone: (02) 9871 8400 (TTY only) Brisbane Office Telephone: (07) 3357 8266 (TTY) or (07) 3357 8266 (Voice) Website: deafaustralia.org.au Auslan Connections (Interpreting Service) Victoria Telephone: 1800 287 526 or (03) 9473 1117, (03) 9473 1143 (TTY only) Website: www.expression.com.au/ interpreting

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An artist and illustrator, the co-founder of one of the countryâ&#x20AC;&#x2122;s only disability led theatre companyâ&#x20AC;&#x2122;s and a passionate theatre maker were all recognised at the National Arts and Disability Awards.

Arts Awards Celebrate Excellence I UMN ED

Dion Beasley was awarded the Australia Council National Arts and Disability Award (Emerging Artist). Beasley, a 28-year-old Alywarr man is an awardwinning artist and illustrator. Janice Florence was awarded the Australia Council National Arts and Disability Award (Established Artist). Florence is the artistic director and co-founder of Weave Movement Theatre, a company based in Melbourne. She is a pioneer in inclusive dance and physical theatre. Brisbane-based theatre maker Madeleine Little was awarded the Arts Access Australia National Leadership Award. Alongside making theatre, Little is also researching accessible theatre practice at the University of Southern Queensland. The Australia Council for the Arts partnered with Arts Access Australia for the first time last year to present the awards.

Inclusive Little Athletics

Funding for More Effective Care

Little Athletics will develop an Australian-wide inclusion program to enable children with disabilities to participate in community-based Little Athletic activities. Funding from the NDIA will allow the organisation to redesign their traditional competitions to ensure children with a disability are not excluded or segregated. An education program is also a part of the project as well as upskilling for centres around the country.

The Council for Intellectual Disability has partnered with the Australian Government to deliver a program aimed at ensuring Australians with an intellectual disability received greater support in the health system. The Primary Care Enhance Program aims to increase the skills and ability of GPs and other allied health professionals to provide effective care for people with intellectual disabilities. Alongside supports and resources for GPs and health professionals to build their capacity to care for people with intellectual disabilities, the Program will also fund health promotion information for people with intellectual disabilities and their families and support networks.

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Plan to End Barriers to Work People with Disabilities Australia (PWD) have launched a $100 million proposal to help more people with disability find work and stay in work. The proposal calls on the federal government to develop a National Jobs Plan for people with disability that looks at the obstacles and barriers to employment. The proposal also calls for funds to transition people with disabilities out of sheltered workshops and for a national advertising campaign to tackle discrimination in the workplace as well as increased funding for JobAccess. Jeff Smith, CEO of PWD said that the proposal was a ‘down payment in the economic future of people with disability across Australia’. ‘We know that people with disability find that outdated attitudes, a lack of flexibility and accessibility can make getting and keeping a job incredibly hard,’ Mr Smith said.

The numbers around people with disability and work are consistently disappointing. Of the people with disability of working age, only 53% are in paid work. This compares to the 82% of non-disabled people of working age in paid work. People with disability face discrimination, a lack of accessibility and flexibility according to PWD. ‘We believe that the measures outlined in our plan will contribute significantly to removing the barriers people with disability face, and make it possible for many people with disability to enter and stay in employment,’ Mr Smith said.

Greater Choice and More Flexibility NDIS participants can now enjoy greater flexibility and increased choice accessing transport funding. From March 1, 2020, participants have been able to flexibly use their core support funding to claim provider transport costs associated with transport to and from NDIS funded community-based activities. Minister for the NDIS, Stuart Robert said participants would now have a fairer and more consistent process to cover their transport costs with providers. ‘This change will give participants more autonomy in their plans, and greater choice and control over the services and supports they need,’ Mr Robert said. ‘These changes build on positive momentum in resolving the long-standing issues regarding the interface between the NDIS and transport supports,’ he said. ‘As we deliver our plan for the final 20 per cent of the NDIS we will continue to make considered changes that ensure the sustainability of the scheme while maintaining the core objective of choice and control for participants.’

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The Science of Sleep Forty winks. A siesta or a catnap. Get some shuteye or catch some z's. We have plenty of words and phrases to describe sleep. But why do we sleep and how much sleep do we need to feel rested, refreshed and ready for the day?

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z Why do we sleep? Our body’s desire to sleep is controlled by the circadian and homeostatic processes. You’ve probably heard of the circadian process or the internal body clock as it’s often known. The homeostatic process refers to the way the pressure to sleep increases across the day and then decreases as we sleep. Both of these processes are influenced by our genetics but also by exercise, illness and our sleep patterns. We often think that when we sleep nothing much is happening. But that’s not quite true. As we’re moving through the cycles of sleep, our bodies are consolidating our memories, transferring our short-term memories to our long-term memory. But that’s not all we’re doing. Our bodies need sleep to repair and renew, to grow new muscle or tissue and to recover from the day’s activities. While science has yet to solve all the mysteries of sleep, we do know that it’s necessary to ensure we can stay healthy and well. How much sleep do we need? Many experts suggest adults need eight hours of sleep a night. The idea being that this is enough sleep to ensure you’re well rested. Of course, we’re all different and so while eight is the number usually suggested, some of us are good with only seven while others need nine. Children and teenagers generally need more sleep than adults. In addition, things like stress, illness or travel can influence the sleep you need. The most important thing is to make sure you get enough sleep to feel rested, refreshed, alert and ready for your day.

Tips for a good night’s sleep

Consistent and healthy sleep habits are a good way to help you get a good night’s sleep. The following tips may help you ensure you’re well rested. •

Go to sleep and wake up at the same time every day.

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In the four to six hours before bed, avoid caffeine and alcohol.

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Avoid exercising within two hours of going to bed. However, exercise five to six hours before bed can help you sleep.

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Avoid eating big meals in the two hours before going to bed.

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Establish a relaxing bedtime routine. This could include a warm bath, some time reading or music.

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Turn off any screens, including TVs, mobile phones, laptops and tablets a good thirty minutes before bedtime as the light emitted by these devises can trick your brain into believing that it’s still daytime.

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If you can, keep your bedroom dark, quiet and at a comfortable temperature—not too hot and not too cold.

If you’re struggling to get enough sleep or you’re not feeling rested and well regardless of how much sleep you’re getting, see your doctor. Please note the information supplied is general in nature. Please consult your medical practitioner for individual advice.

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