Labelling The Disabling

On this episode Carol and Ed meet the incredible Jerome Etteridge.  Jerome is a vibrant young man on a mission to succeed at whatever he turns his mind to.  At a young age he already has an impressive resume in education, sports, work and entrepreneurial pursuits.  Jerome has a goal to become the “face of autism” in Australia by normalising autism and the experience of being on the spectrum.  Through lots of deeply personal anecdotes we hear how Jerome uses an open approach and sense of humour to break down the barriers to inclusion.  Jerome now works in the school system supporting students with autism.  Jerome welcomes interactions and conversation about disability and uses his lived experience to support others with and without disability to develop and evolve their understanding of the benefits of diversity and inclusion. Check out Jerome's website: Motivational Talk - JeromeEtteridge

In this episode Carol and Ed talk with the talented and accomplished Nick Taylor.  Nick is an athlete (in basketball and golf), Executive at the Yajillara Trust, Chair of Wheelchair Sports NSW & ACT and now Director at The Disability Trust.  Nick represented South Africa and Australia at the Paralympics and World Championships in basketball. A serious car accident at the age of 18 resulted in spinal injury and paraplegia and lead Nick to re-evaluate his life and career trajectories.  Nick takes us through the experience of adapting to his life post injury and his move to Australia from South Africa.  Nick talks to us about his views across a range of life areas (including an interesting assessment of how the handicap scoring system in golf lends itself to inclusion through leveling the playing field in that game).    Nick talks about the need for continued innovations in housing for people with disability and an evolution in models of support to improve outcomes for people with disability and society.  Nick talks about the strengths of the NDIS as well as how it needs to continue to improve with his hopes for the outcomes of the NDIS Review to bring us to a self-directed funding model that encourages, supports and incentivises people to use their funding to achieve outcomes.  Nick on Wikipedia: Nick Taylor (basketball) - Wikipedia NDIS Review Website: Working together to deliver the NDIS | NDIS Review

In this episode Carol and Ed meet with the Australian Disability Discrimination Commissioner, Dr Ben Gauntlett. Ben talks about his life journey having experienced a spinal cord injury as a teenager and how that shaped who he is and informed his life choices and decisions (including his decision to swim 22km from Perth to Rottnest Island!). Ben has had a huge impact on human rights for people with disability in Australia and in his current role has a strong focus on housing and employment. Ben stresses the importance of a culture that supports an appetite for inclusion and articulates the benefit of good inclusive employment practices creating workplaces are dynamic where employees thrive and do their best work. Ben explains how “Employment [for people with disability] is the by-product of a disability policy system that works well” and as a result needs to be a strong focus for any successful disability policy. The benefits of policy settings such as a mandated accessibility requirement for the national construction code in Australia are discussed combined with the need for a more sophisticated approach to measuring the benefits of investing in good disability policy. · Link to the AHRC IncludeAbility website: https://includeability.gov.au/

In this episode we meet Wollongong resident and avid cyclist Matt McMaugh. We speak to Matt and his mother and father, Tessa and Ian, and hear about how cycling has literally opened a world of opportunity to Matt. As his father Ian says: "Learning to ride a bike is the single most important thing for Matty's independence and since he's been able to ride independently the whole world has opened up to him." Matt explains that he can go wherever he wants, whenever he wants with his bicycle connecting him with work, friends, family and the community and realizing great health and well-being benefits. Matt and his parents share the wonderful story of learning to ride at the age of 14 and the way his family supported him is full of useful tips and techniques for anyone who is wanting to take on the challenge to learn to ride and some of the important safety and risk management techniques Matt has employed in his life on the bike. Matt's passion for riding has also opened up all sorts of travel opportunities riding rail trails and scenic locations in Australia and New Zealand allowing him to have a fantastic quality of life. Matt now also generously volunteers his time every month to support other people who want to learn to ride at The Disability Trust's CycleAbility program. Matt is living proof of the Albert Einstein saying "Life is like riding a bicycle. To keep your balance you must keep moving."

In this episode Siobhan tells us her story of acquiring disability - vision loss and mobility impairment - as a result of having ovarian cancer. She explains the impact of navigating the changes that came about because of her disability and complex health challenges and how these were amplified by the added challenges of ascertaining who may be able to help her with her new support needs. The often confusing bureaucracy of the NDIS and uncertainty about who will pay for disability or health related supports is vividly brought into focus as Siobhan tells her story. Siobhan's experience articulates how bureaucratic systems can be inaccessible and obstructive to people getting their needs met in the simplest way possible resulting in greater costs in administration and gate keeping. Siobhan's concern about people missing out on the supports they need lead her to write an opinion piece that was recently published by the ABC - link below.Siobhan's article – social benefit of NDIS being undermined by bureaucratic hair splittingGuide Dogs Australia – link

In this episode Carol and Ed meet with the amazingly interesting and entrepreneurial Max Bergmann. Max, a former Paralympic athlete, is a German Australian who is now living outside of Perth and founding operator of an ethical camel dairy farm, the DromeDairy, producing skin care products and taking care of hundreds of camels!Max tells us about his fascinating life as a Paralympic athlete, becoming a doctor of Agricultural Science and how he got started on his surprising career as a camel farmer.Max has a vision impairment and is legally blind and this has meant he has had to adapt his camel dairy with fascinating innovations that enable him to manage his farm and will have flow on benefits for other businesses around the country. For example he has come up with the world's first decentralized mobile camel dairy farm where he takes the dairy to the camels to milk them!Max has great advice for people about how they should not deny their disability nor do they need to be defined by it either and how by letting your passions and interests guide you in life we can find fulfillment and success.You can read about Max's “DromeDairy” here: Our Story – DromeDairy Body + Skin (thedromedairy.com)ABC Article about Max: Technology, Lego, and innovation guide legally blind camel farmer - ABC NewsFarm adaptations article link from Job Access: Max Bergmann | Job Access

Founding employees at The Plant Room Café in Wollongong, Mark and Amy join Carol and Ed in this conversation to talk about the huge benefits of workplace inclusion, the development of job skills and being gainfully employed.As well as great food and coffee The Plant Room Café provides jobs and support to people with disability to work and gain the skills they need to succeed and lead a career in hospitality. Mark and Amy talk us through their employment goals, the skills they have developed and the great ideas they have for the future and tell us how their success in this important area of life has increased their confidence, their independence and allowed them to really enjoy the other things they love in life including holidays, hot rods and jewellery.Find out more about the Plant Room Cafe here (and how they are getting on with their barista course): The Plant Room Cafe « The Disability TrustCheck out Mark's Hot Rods Facebook page here: (5) Odd Rods Street Rod Club Illawarra | Facebook

In this episode we meet Ken Wynn who shares his life story with us. It’s a story of perseverance and passion that illustrates some of the many changes that Australia has gone through in relation to the understanding, experience and expectations of disability.Following a workplace accident as a 15 year old Ken became a quadriplegic and we hear how he adapted to his injury and has lead a full and interesting life. From studying and working as a draughtsman, adapting vehicles and houses to be accessible and functional for his use, travelling and winning medals in Japan as an athlete, getting married and raising a family Ken has packed a lot of life in and has much he still wants to do.Carol and Ed talk to Ken about his views on a range of topics and this conversation shows his adaptability, creativity, tenacity, resilience and passion for life.

In this episode we meet with the high achieving sisters Moana and Lavinia Hope. Mo and Vinny grew up as part of a big family of 14 kids and Mo quit school in the early stages of High School to take care of her sick father. At 26, Moana became the carer for her sister Vinny who lives with Moebius Syndrome a rare neurological condition affecting facial muscle and eye movement.Moana is well known for her outstanding AFLW career including a 100 goal season at the St Kilda Sharks and for her appearances on Survivor All Stars. We talk with the sisters about their lives in Melbourne’s COVID lockdown, how they support one another, setting goals and staying motivated, running a business, their growing family, the importance of inclusion and Mo’s great new autobiography “My Way”

Ed and Carol meet with Andrew and Lud Kerec. Andrew and Lud are the father and son owners of Renaissance Homes, winners of the ACT Chief Ministers Award for Access and Inclusion for their work on designing and building accessible homes.Following a cycling accident in 2010 Lud became a quadriplegic which lead to the need to adapt Andrew's family home to accommodate Lud starting Renaissance Homes on their journey to becoming a leading provider of accessible housing designs. They give a fascinating insight into the fact that when we experience disability the most disabling thing is often the very houses in which we live; post injury Lud found he was "living in a country where he can't get into 99% of the homes" including those of his own family and friends, decreasing his social networks at a time when he needed them most.Andrew and Lud talk of the great benefits to absolutely everyone of accessible housing design, the affordability of designing homes that are both beautiful and accessible and the need for urgent policy change to support greater accessibility of design as a standard across the building industry.We also hear about Lud and Andrew’s incredible adventures and travels across Australia following his injury showing how, with a focus on goals a little ingenuity and imagining what might be possible, there continues to be amazing quality of life possible after injury.Renaissance Homes website: http://www.renhomes.net.au/Andrew Builds a Future for his Dad (City News article): https://citynews.com.au/2017/andrew-builds-future-dad/

Here we meet the amazing Yenn Purkiss. Yenn is the author of a stack of books including the bestsellers, “The Awesome Autistic Go To Guide” and The Guide to Good Mental Health on the Autism Spectrum”. An incredible advocate and mentor, Yenn speaks openly about the issues that are facing people with autism in the times of COVID with impacts on people’s mental health and wellbeing due to our present state of uncertainty. Yenn talks about not fitting in as a young person and struggling with her own diagnosis and identity leading to challenges including the traumatic experience of going to prison as a young person. They explain the importance of accepting yourself for who you are, why communication is key and the value of employment for individuals and of employing people with disability for employers. Yenn explains coming out as non-binary themself, how changing their name has been a great experience, how everyone’s journey is different and the importance of accepting yourself for who you are.Yenn’s books and writing can be found here: http://www.jeanettepurkis.com/

In this episode we hear from Professor Yerbury how a lived experience of disease and disability can strongly inform and benefit the progression of research into treatments and therapies. Justin explains some of the latest research and theories about the causes and treatments for the disease that he himself has, Motor Neuron Disease (MND). MND is actually the name for a group of debilitating and progressive neuro degenerative diseases, and we learn how common and impactful these conditions actually are. Justin describes personal challenges with surgery and the NDIS and how, as individuals and as a society, we must continue to remove barriers to allow people to flourish. He has a range of practical suggestions for things we can do to improve accessibility for people with disability in terms of participating in advocacy and policy change (including contributing to your local council’s disability inclusion action plan). He also reminds us that there is no instruction manual for disability that we need to stay ahead of symptoms, and how, regardless of disability, everyone can make a positive contribution. (Oh and Ed and Carol got a selfie as we were a little bit star-struck!)

Ethan Green, Anne-Louise Rentell and Ethan Arnold are representing the Strangeways Ensemble, a Wollongong based group of performers, writers and artists with disability who have been working to successfully bring a whole new range of stories that need to be told into the professional mainstream drama space with sold out performances. We hear about the passion, effort, commitment and collaboration that is required to bring a production to life as well as the range of other interests and skills that inclusive dramatic arts supports. We discuss acting in the age of COVID19 and the benefits for everyone of the increasing representation and participation of people with disability on stage and screen.

On this episode we hear from the fascinating and talented Craig Anderson. Craig is a DJ hosting the popular drive time “Afternoons with Ando” on radio 2MCR 100.3 in Sydney. Craig has also worked as a journalist, written Star Trek scripts and was formerly a filmmaker. Craig is getting the support he needs to achieve his goal of being more independent and here he gives great advice as to how to make the most out of our time, follow through on our ideas and tap into our passions to achieve what we want in life.

Susan Wallis is a parent to Gracie Wallis who passed away in 2018 at the age of 13. Susan shares her incredibly personal experiences of raising a child with a significant disability and Gracie’s many achievements and contributions including lobbying and campaigning for the NDIS to make it better. Susan talks about how "disabled isn’t lesser, it’s just different", and how people with disability can and do have equal and often greater impact than those without. As part of her legacy there is now a scholarship in Gracies’s name supporting young women with disability to achieve their goals. Susan questions the disrespectful way that diagnoses can be thrown around, reminds us that loving families are the experts in the lives of their children and champions the benefits of good universal design for all.

In this episode we talk to story-teller, author and journalist, Tim Rushby-Smith. Tim tells us about becoming paraplegic after a fall in 2005, just as he was about to become a dad for the first time, and about being in a hurry to get back to “normal life” after his injury. Tim educates Ed and Carol on the dangers of Lego and wheelchairs, techniques for keeping fast moving toddlers in check in a busy city, the frustrations of being singled out as a “legend” for going to the beach with your family and other challenges of parenting with disability. We also learn how his injury led to major changes in his career and to new opportunities including writing about his experiences as a wheelchair dad for the Times of London and in his book “Looking Up”, as well as co-writing the incredible story of Darren Longbottom, the surfer subject of his bestselling book “Beyond the Break”. Tim explores the ways in which people cope after injury, focussing on his own experiences, and how storytelling can help you adjust post injury. Tim urges us to “start with the person”, avoid labelling and assumptions, and to tap into the curiosity and openness displayed by children in exploring the nature of disability.

In this episode, we get to meet Carol Heijo. Carol is the self-described legally blind, non-binary, pan-sexual, Marxist, feminist and just awesome co-host of “Labelling the Disabling” who challenges us to “go beyond the obvious”. Everything is on the table – gender roles, generational differences, sexual identity, you name it – as Ed talks to Carol about her personal experience of Stargardt’s Disease, growing up with a developing visual impairment and Carol parallels her lived experience of disability with other aspects of social, cultural and economic disadvantage. You can hear in Carol’s story her passion for fairness, equity and inclusion laced with her natural humour as she challenges us to change tired and limiting perspectives on disability, raise our expectations and tap into the natural resilience, strength and innovation that disability brings to society. Carol reminds us that for many in society there were no “good old days”, that change is good and that for people with disability we need to maintain a strong and steadfast focus on a better today and tomorrow.

Meet Andrew Radford who is passionate about speaking up to ensure people’s rights are respected. Andrew is a high achiever and is now internationally recognized for sharing his experiences at the Thriving with Autism 2019 Asia Pacific Autism Conference in Singapore and is the Asia Pacific Autism Advocate. Hear how Andrew has become better connected socially through his advocacy work, how he supports his local community and young people with autism to develop their own skills and self-advocacy abilities and his goals for the future.

Hear from Dane about his mind blowing story of running over 4000km across Australia in 2017 in memory of his late father Rod, to raise awareness about the rights and abilities of people with disability as well as money for worthy causes. He talks about his love of running, his passion for helping others and his commitment to achieving his goals and also announces his plans to run around the country in the future. Dane’s run https://www.youtube.com/watch?v=AwjsH3kgiyQ

Meet young Alex who has managed to pack a lot in to his 13 years. He shares his story as a young person with a disability, his incredible NDIS expertise, the importance of getting the right supports that work for him, the benefits he has experienced from working on drama, his passion for photography projects and setting and achieving his goals.

Katie is the mother of Chelsea, a young woman with Prader Willi Syndrome. Katie talks about her parenting experience, what Chelsea has taught her, and how literally everyone benefits from the learnings that disability brings. Katie has an infectious enthusiasm and energy and focuses on the positives of disability and the developments that the NDIS has brought to her life and provides many tips regarding her approach to successful parenting and creating a life of zero stress.

Vote for Paul! In this episode Paul talks about his journey from Merimbula to Macquarie Street, his work with the Disability of Council of NSW, his perspectives on the challenges for people with disability in regional Australia and his passion for politics and world affairs.

In this episode Dee talks about her journey to becoming a mum with disability, defying her own and others expectations, attitudes and judgements of what she could achieve to start a family and raise a child. Dee is focused on achieving her dreams of a great family life and is open to the opportunities that come her way. No spoilers here, but we can assure you that she has quite a story to tell!

Sam Maloney the sit down comedian talks with Ed about his upcoming gig as MC of the Your Voice Your Choice Self Advocacy Conference and talks about the great outcomes as well as the hurdles he has experienced on his NDIS journey.

Carol and Ed interview Shannon Lalor, a descendant of the Eureka Stockade, about his experiences as a man with an intellectual disability and mental health challenges. Shannon gives valuable insights into how we can better understand each other to end discrimination and how people need to stop judging people before they even know anything about them.

Carol and Ed meet Dr Shoshana Dreyfuss who explains how words are not needed to communicate, introduces us to signs, symbols and semiotics and details how her non-verbal son, Bodhi, communicates and how this inspired her own research.

In this episode Carol interviews her co-host Ed to discuss the thinking behind the podcast, to understand the social model of disability and to explore what is disabling people in Australia today.