Professor Justin Yerbury together with Dr. Luke McAlary and Dr. Isabella Lambert-Smith

Our feature book for Inclusive Futures Book Club yesterday was “Fighting Fate” by the late Professor Justin Yerbury.

This special event was introduced by Justin's wife, Dr Rachel Yerbury. Rachel read an excerpt from the book where Justin describes the unjust discrimination as a result of ableist attitudes that he experienced as a researcher.

We then heard from researchers representing the University of Wollongong's Motor Neurone Disease research group established by Justin. Victoria Shephard, Tom Walker and Dr Isabella Lambert-Smith presented their team's comprehensive research program into MND. They are investigating the pathology of MND, and approaches for diagnosis, and therapies for slowing disease progression or reversing the damaging effects. They also spoke about their meaningful connection with the MND community and how this inspires them.

A full transcript of the event is available in accessible formats, please email us for a copy on inclusivefutures@griffith.edu.au

Please get yourself a copy of Fighting Fate - all proceeds go to MND research.

https://www.booktopia.com.au/fighting-fate-justin-yerbury/book/9781922930347.html#:~:text=Professor%20Justin%20Yerbury%20is%20a,genetic%20form%20of%20the%20disease.

Co-designing solutions to tackle the most important challenges faced by people with disability where they live, work and play.

To mark Spinal Injury Awareness Week, we had a conversation with Lindsay Nott of MyC5Life. Lindsay shares his insights on hacks he has devised, and challenges he encounters, in going about his daily life doing things such as cooking and socialising with friends. Lindsay highlights the importance of co-designing together with people with lived experience. We look forward to hosting Lindsay in our next Design Café.

Up to forty percent of Australians live with a disabling impairment or chronic condition, and many others are affected in some way. Many people are excluded from work, independent lifestyles, sport and social events. It’s vital that we come together to meet this challenge head-on for the future, and Griffith University is doing just this through the establishment of Inclusive Futures: Reimagining Disability.

Research, wisdom and experience shows that empowering people to live independent lives improves their outlook, employment prospects and confidence. People participating in aspects of everyday life are less isolated and more independent. Inclusive Futures focuses on assisting people with disability to tell us their stories, show us their inventions and in turn, we will make them accessible to anyone.

Our Design Lab is a place where ideas come to life, where dreams become tangible realities. It’s where a diverse alliance of people with disability, researchers, 3D printing experts, industrial designers, educators, and health and social services providers collaborate to invent unique solutions that transform lives.

Hosted within our Design Lab, our Design Cafes are short product design sprints led by people with disability via Citizen Challenges. Design Cafes can be held online or in person. This mixture of inclusive and accessible meeting styles brings participants together from any location into the one place. Usually, the first meeting is in-person and subsequent interactions are hosted online.

The complexity of a product or solution will determine how many Design Cafes are required to develop a prototype that is desirable, practical and economically efficient.

To mark the occasion of Spinal Cord Injury Awareness Week (SCIAW), we asked Lindsay Nott, of MyC5Life to be the guest of our next Citizen Challenge.

Spinal Cord Injury Awareness Week (SCIAW) is an important week for people living with spinal cord injury (SCI), rehabilitation service providers, industry, and the wider community. It is a time to get informed about the challenges people with SCI face in daily life, and the often-simple actions that you can take towards inclusion and ensuring better access for the 4.4 million people living with disability in Australia. Find out more on The Hopkins Centre Website.

Lindsay’s Story

I obtained a spinal cord injury several years ago, which sees me getting around on 4 wheels instead of 2 legs! My injury hasn't stopped me from making the most out of this beautiful life. I love travelling and having adventures!

My SCI journey began on the last day of Grade 12 at the age of 17, when I went for a celebratory swim at Southbank, Brisbane and broke my neck at vertebrae C5. My world changed at this point in my life, and whilst in the hospital recovering from my injury, my family and I learnt a lot­ – however, once I was released from the hospital, the gravity of my new life with a spinal cord injury was a big learning curve.

Over the last 29 years, I have done public speaking at universities, conferences, fundraisers, and within healthcare settings. I also work part-time, travel, attend the gym and volunteer as a peer support mentor for the newly injured and their families. Since my accident, I have become an advocate for disability awareness – and my goal is to help people and their families who are in similar situations, as well as healthcare professionals and disability design engineers.

Assistive and adaptive technology allows people to be independent, and is helpful ­– however, bespoke items can be very expensive, giving such items an exorbitant price tag, making them out of the price range for general population, unless funded through the NDIS.

In my experience, the quality behind these products does not equal to the price tag. I have a chopping board that has a few thin, short spikes and a corner guard, however, it is not user friendly, nor does it fulfil its purpose – for example, the border guard is not tall enough to support a piece of bread, should I want to butter it – and the spikes are too short to hold the likes of a potato or apple, if I need to chop or peel them and often roll off the spikes completely, which can be dangerous for me with so many sharps between the spikes and a knife, particularly when combined with my limited mobility.

Therefore, this item, amongst others ­­– is a redundant waste of money and/or funding, and like plenty of other items over the years, have gone into the back of the cupboard, collecting dust or straight to donation – as I cannot use them!

In comparison, where product design fails in its usefulness, electronic technology has been much more fit for purpose, enhancing my life in amazing ways. As an example, I currently have a GoPro and use Apple’s Siri AT, which is more user-friendly. I can sync between all Apple devices – allowing for easy upload, editing and exporting, all completed seamlessly.

Assistive and adaptive technology has advanced greatly over the past 29 years, allowing for everybody to have access too, and use, some form of technology at cheaper price points, which in turn, allows us all to live a more independent life.

This SCIAW and as part of my role as guest for the next “Design Café”, I would like us to think about people with disability and how we can contribute to making life more accessible. To do this, we need to think more carefully about the functionality and quality of accessibility products, and the best way to do this, is to co-design products with consumers at the core of concept, design and user testing.

We also need to bring the price point back into the equation, to ensure items can be accessed at a more realistic price range.

Listen to Lindsay's MyC5Life Podcast Series on Spotify.

Get Involved

Are you a product designer, engineer, 3D printing expert, philanthropist or disability design enthusiast? Would you like to like to be involved in our next Design Café with Lindsay Nott, and to be part of the innovative team who solves his Citizen Challenge – or perhaps you might like to sponsor this event?

All ideas generated can be converted into product designs that are added to the Inclusive Futures Design Library.

Our experts will work together with people with disability to refine the idea, create and test prototypes, and then produce a manufacture-ready design file. The designs can be downloaded by anyone and made in their locality with a 3D Printer.

Contact Us

Email: inclusivefutures@griffith.edu.au

Visit our Design Hub: https://inclusivefutures.griffith.edu.au/hub-page/design-hub

INCLUSIVE FUTURES BOOK CLUB
A conversation with authors Dr. Marita Heck (author of Secret Forces) and conversation partners Lisa Cox and Chantelle Otten.

Inclusive Futures: Reimagining Disability, Griffith University hosted our latest #BookClub event on #SexualHealth, #wellbeing and #disability, with author Marita Heck and conversation partners Lisa Cox and Chantelle Otten online, on Wednesday, 23 August on Microsoft Teams.

It is a human right to experience positive #SexualHealth and wellbeing, yet it is a topic that is often neglected and ignored. Please join us (via our online recording) for an open, honest discussion about challenges experienced by #PeopleWithDisability and how we can increase awareness, education and support.

Dr Marita Heck (PhD, Master of Midwifery, Bachelor of Nursing Science) is an Adjunct Research Fellow with The Hopkins Centre, Menzies Health Institute Queensland, Griffith University on the Gold Coast in Queensland. Dr Heck is further a member of the Griffith University’s Inclusive Futures task force. In this space, Dr Heck is leading a consumer-led multidisciplinary research project in collaboration with five Australian universities promoting holistic sexual health support for people living with a spinal cord injury.

In addition, Dr Heck conducts research into supporting women living with an SCI in pre-pregnancy, antenatal, birth and postnatal support. Dr Heck is further a very experienced #clinician working with people living with a disability in the sexuality and fertility, and antenatal, birth and postnatal period in the Australian community. Besides her work in the research and the clinical setting, Dr Heck is a vivid romance novel author and published her first suspense romance novel Secret Forces in 2020.

Lisa Cox is an Internationally awarded thought leader, TEDx speaker, #authorand consultant who is working with business, government, Griffith University and others to help create solutions and change social attitudes towards disability. Her work has been recognised around the globe and featured in media like FOX, NBC News, Huffington Post, Smart Company, Vogue and AdNews Australia.

Chantelle Otten is a Melbourne based Psycho-Sexologist who is passionate about empowering people to feel great about their sexual health, self-esteem, communication and education. With a background in scientific research, sexual medicine, and counselling, she believes that sexuality and self-esteem are an integral part of life, which everyone is entitled to. Good sexual health should always be enjoyable, pain free and without prejudice.

For those who missed the event, you can access the recording here https://youtu.be/11DP3nz_Tn4 - A full and accessible transcript can be provided upon request.

For more information about the author Dr. Marita Heck:
https://www.amazon.com.au/Secret-Forces-Marita-Heck-ebook/dp/B08KTSLM2G

https://www.sexpositivecommunity.com/

For more information about Lisa Cox:

https://lisacox.co/

https://www.instagram.com/lisacox.co/

For more information about Chantelle Otten:

https://chantelleotten.com/

https://www.instagram.com/chantelle_otten_sexologist/

If you would like to stay up to date with upcoming events and join the Inclusive Futures book club community, you can join up here: https://inclusivefutures.griffith.edu.au/inclusive-futures-book-club?tool=survey_tool#tool_tab

If you have any questions or would like a copy of the transcript, please do not hesitate to contact the team at inclusivefutures@griffith.edu.au.

INCLUSIVE FUTURES: REIMAGINING DISABILITY - INDUSTRY ADVISORY BOARD

Griffith Inclusive Futures: Reimagining Disability (IFRD) Industry Advisory Board is a rare collective of amazing leaders, influencers and achievers in business, industry, and society. The Board’s role is to advise on strategic direction and identify and review sustainability pathways and opportunities for growth and influence.

They are passionate about extending the Beacon’s work into industry, by connecting our cutting-edge research and researchers with real-world commercial possibilities, applications, and solutions.

The Advisory Board members are mentors, connectors, and supporters, they help grow researcher’s skills, networks and impacts by providing personalised guidance, introductions, resources, and feedback.

They listen to the needs and challenges of both sides and help the researchers find and seize commercial opportunities and industry to connect and engage with our researchers and programs.

They also create and oversee their own industry projects that combine and leverage the expertise, research and capabilities across different researchers and IFRD research specialities, which deliver innovative and practical products and services for the disability sector and into industry.

Our incredible team of Industry Advisors include:

• Morris Misel – Board Chair, Industry Fellow, and Global Foresight Strategist
• Prof. Abby Bloom – Adjunct Professor and Industry Fellow
• Dawn Adams – Industry Fellow and Founder/Imagination Coach, Imagination Session
• Sharon Hunneybell – Industry Fellow, and CEO, The Gold Coast Innovation Hub
• Scott Chapman – Industry Fellow, and Co-Founder, Able Digital Wellness Pty Ltd
• Justin MacDonald – Industry Fellow, and Managing Director, Just SDA Management Pty Ltd
• Ali Galadari – Industry Fellow, and CEO, Compago

For more information, contact:

Morris Misel, Board Chair

m.misel@griffith.edu.au

Education is more than a privilege; it’s a pathway to success.

Griffith’s Inclusive Futures: Reimagining Disability research alliance is committed to supporting students with disability to achieve their educational aspirations.

To this end, we are pleased to announce an exciting opportunity for a student with a permanent disability to undertake a HDR program at Griffith University in 2024.

The Griffith University Disability Scholar Research Scholarship provides a stipend of AUD $32,192 (2023 rate, indexed annually) — paid as a fortnightly stipend, to support a commencing candidate of exceptional research potential, who has a permanent disability and who may have experienced educational disadvantage, while they undertake a higher degree research program at Griffith University.

In addition to the usual research allowance allocated to HDR candidates to support the cost of their research period, a GUDSRS awardee is provided an additional research support allowance of up to $6,000 for the entirety of a Doctoral Program (or a pro rata amount for a Masters Research program) to support research related costs associated with a disability.

This scholarship is available for international onshore and domestic students.

Apply before 5 September for intake 1, 2024.

https://www.griffith.edu.au/research/inclusive-futures-reimagining-disability

For more information contact:

Griffith Graduate Research School

Phone: 07 373 53817
Email: hdr-scholarship@griffith.edu.au
Web: Griffith Graduate Research School

NATIONAL STROKE WEEK 7-13 August 2023

Living Well: Promoting adherence to stroke secondary prevention behaviours by imparting behaviour change skills (GU ref no: 2022/308)

National Stroke Week 2023 encourages the community to fight stroke together, so that you and your loved ones can continue to enjoy life during and after recovery.

Fighting stroke together aims to bring people together to share knowledge, support and resources to help prevent strokes form occurring and to aid in the recovery process for those who have experienced stroke.

People who have had a stroke are at a higher risk of having another stroke.

Making healthy changes can help reduce this risk, but not everyone gets the right support after they leave the hospital. That's why National Stroke Foundation, along with experts at Griffith University, developed "Living Well After Stroke".

This program teaches stroke survivors how to manage their own health by helping them make changes to their behaviour like eating more healthily, increasing physical activity, and taking medications regularly.

The intervention is expected to improve patients' healthy behaviours and teach them how to make further changes independently. The goal is that this program will help prevent recurrent stroke and transform how we care for stroke patients in Australia.

Chief Investigator:

Professor Kyra Hamilton, Director, Health and Psychology Innovations (HaPI), School of Applied Psychology, Griffith University

Co Investigators:

Professor Joy Parkinson - ACU, Dr Stephanie Smith – Stroke Foundation & Griffith University, Tom Caitens, Andrea Sanders and Dr Lisa Murphy – Stroke Foundation

Get involved or find out more:

https://strokefoundation.org.au/what-we-do/prevention-programs/living-well-after-stroke

Contact:
Professor Kyra Hamilton

kyra.hamilton@griffith.edu.au

or

Dr Stephanie Smith

Living Well After Stroke Coordinator

Stroke Foundation

ssmith@strokefoundation.org.au

Visit our websites:

HaPI Lab: hapiresearchlab.com

Stroke Foundation: https://strokefoundation.org.au

DESIGN CAFÉ PILOT

Co-designing solutions people want and need

Last Saturday, 22 July at Griffith University’s Gold Coast Campus, “Design Lab” Lead - Mathew McShane delivered our first Inclusive Futures Design Café Pilot program.

The Design Cafe is a community building and technological engagement project that brings together engineers, designers, and occupational therapists with people with disability, to explore engineering and technology solutions to challenges people face every day.

Together with people who have lived experience, the program put forward new, co-created solutions for development, and thus provided valuable enhancements to people’s lives.

“We had an amazing opportunity to collaborate on inclusive designs during this event, truly embracing the essence of co-design. It was remarkable to directly learn from users and understand their unique challenges, while actively involving them in the design process. Such involvement has often been overlooked when designing for disability, but this event showcased a refreshing approach to human-centred design.”

For more information on future Design Cafés, please contact:

Matt McShane

m.mcshane@griffith.edu.au, or

Inclusive Futures: Reimagining Disability

inclusivefutures@griffith.edu.au

Congratulations to the Inclusive Futures: Reimagining Disability and Griffith University staff, students and ambassadors with disability who competed in the 2023 Gold Coast Marathon this weekend.

A shout out to several members of our team who powered home to the finishing line in their respective races:

Katie standing next to Running Guide Simon. Both smiling and showing their finisher’s medals.

KATIE KELLY OAM PLY & SIMON FOSTER

Inclusive Futures Engagement Council and Gold Medalist para-triathlete (Rio 2016 Paralympics) Katie Kelly and her amazing guide Simon ran a powerful race together in the full marathon 42.2km (F45-49) today with a time of 3:47:56 – Congratulations Katie and Simon!!! We are in awe of not only your combined endurance and stamina, but your incredible teamwork!

“Today I could run because of people like Simon. A father of two, with his own business, he found time to train with me on the weekends and run today. That’s community at its best. And today despite the challenges of running with less than 5-degree vision, I felt free. I was reminded again why we must always stay focussed on celebrating what we can do today.” Katie Kelly OAM PLY

MICHAEL DOBBIE-BRIDGES OAM PLY

Michael—a former Paralympic tennis champion and Inclusive Futures Engagement Council Member raced the 21km (M40-44) event on Saturday, with a most impressive 2:07:42 time – Epic result, Michael!

Kudos also to Michael and Katie, who teamed up to raise money for the Sports Access Foundation, which supports children with disability to play more sport and live healthier and happier lives.

DR MARETTA MANN

Maretta, our very own Inclusive Futures Strategic Development Manager, ran an exceptional race in the 10km (F45-49) with a 53:30 time. Exceptional time Maretta!

And lastly, a shout out to JUSTIN PAMENTER, from Griffith’s Learning Futures team, who ran his second fastest time in the 10km, with 59:37 (M50-54).

Congratulations to all the athletes and citizens with disability and chronic conditions who competed. Awesome achievement everyone!

Did you participate in the event? Let us know, so we can celebrate with you!

Inclusive Futures: Reimagining Disability, Griffith University would like to extend a warm welcome to our newest team member Dr. Talitha Kingsmill, Research Fellow. Dr. Talitha Kingsmill is a Non-Executive Director, consultant, educator and solicitor with 25 years’ experience across the private, public and NFP sectors in law, education, educational leadership, research, digital citizenship, cybersecurity, regulatory compliance and policy development.

With 18 years of experience working and raising a family while living with a vision disability, Talitha is a passionate advocate for equitable, accessible opportunities for all.

Talitha believes that access in all its forms is fundamental to equitable opportunity so that individuals may live their best lives. Her lived and professional experiences provide rich insights to the confronting and very real challenges and obstacles for people living with disability and equip Talitha to be a powerful and articulate disability and inclusion advocate.

Talitha’s doctoral research concerned the integration of digital citizenship (safe, responsible and respectful online engagement) in secondary school curriculum. She has published and presented within Australia and internationally in the field of building individual and collective digital citizenship capacity. In 2017, Talitha was awarded an Australian Council for Educational Leaders Research in Educational Leadership and Management Award for exceptional academic achievement in advanced studies in educational leadership.

Talitha understands that a collective voice achieved through consultation and collaboration is powerful, and passionately advocates for this.

Dr. Kingsmill will be working with Prof. Elizabeth Kendall to establish and develop the Queensland Disability Research Network (QDRN) – an enterprise led by researchers with disability and researchers with a particular focus or expertise in the disability sector across Queensland universities.

FIND OUT MORE:

https://qdn.org.au/meet-your-nominees/dr-talitha-kingsmill/

https://www.linkedin.com/in/tkingsmill/

Inclusive Futures: Reimagining Disability:

https://www.griffith.edu.au/research/inclusive-futures-reimagining-disability

CONTACT:

t.kingsmill@griffith.edu.au or inclusivefutures@griffith.edu.au or qdrn@griffith.edu.au

National Pain Week is Australia’s annual awareness event for chronic pain. National Pain Week takes place in the last week of July each year and aims to support and provide awareness to the 3.6 million Australian’s living with chronic pain.

This week Griffith Inclusive Futures: Reimagining Disability, together with The Hopkins Centre has teamed up with Dr Nicholas Aitcheson, Rehabilitation and Pain Specialist, at Metro South Pain Rehabilitation Centre to raise awareness, further explain acute and chronic pain, how the body feels pain, current treatment options and lifestyle solutions.

Keep an eye out each day this week, as we share information, tips and tricks that can help you can create a new life path with pain and why you should do it.

Acute pain vs chronic pain

Picture a child with a band-aid vs a person with pills and injections and ongoing pain.

Our upbringing often tells us that pain is associated with body damage and that we need to rest and get other people’s help to fix it. This works for acute pain, but in chronic pain we need to take control of our own lives, actively work on changing our bodies and minds and find new ways of existing, instead of trying to return to a life that we miss and are nostalgic about.

Relying on rest leads to deconditioning, isolation and weakness. Relying on other people can lead to dynamics of disempowerment. Similarly, relying on medications and surgery leads to reliance on interventions that promise only temporary relief and can have serious side effects.

Check with your health professional that you are safe to proceed (most people with chronic pain are sore but stable and are safe to move). Then gently and progressively start to actively create a new life for yourself.

The graphic below shows the difference between Acute and Chronic pain.

Chronic pain is like a malfunctioning, overly sensitive alarm system.

In acute pain our alarm system is working well. If there is body damage or the potential for damage, then we feel it and do something about it.

In chronic pain the alarm system reacts too strongly with only very small input. It is like a smoke alarm going off when you are cooking toast or a car alarm going off when it rains. The alarm does not accurately represent the threat to the body. Often in chronic pain, the body is stable and safe, but the alarm system is still going.

The brain drives the pain

Pain is felt in the brain. What we are starting to understand is that our mood and the way we think about pain affects the strength of the pain signal that reaches our brain. If we are really worried about the meaning of the pain, then the pain tends to be worse. If you can successfully change your thinking around pain, then you can “decrease the volume” on the pain signal by affecting the pain signal transmission in the spinal cord and brain.

Here are some thoughts that may be unhelpful and some ways to address them:

My body is broken. It wouldn’t be so painful unless there was something seriously wrong.

Pain can exist without damage. Amount of pain does not reflect amount of damage. Think “sore but safe”, “hurt not harm”

This pain means I’m never going to be able to do anything I enjoy again.

Think of the things you can enjoy now even with your current condition. Enjoy those things and gently find ways to expand the things you enjoy.

My back is so sore that I’ll probably be in a wheelchair soon.

Pain is often not indicative of damage, especially not the kind of nerve damage that leads to paralysis.

I might not be able to work for much longer because of this pain and then I won’t be able to support myself or my family.

These are reasonable thoughts to have, however worrying about them can make pain worse. Trying to address unhelpful, repetitive thoughts can help with your pain.

I need to protect my body. That’s why I keep my muscles so tense.

Muscle tension in itself usually leads to worsening of chronic pain. Gentle relaxation and movement is much more beneficial.

Low mood, anxiety, excessive worry, poor sleep all increase pain as well, so dealing with these tends to improve pain.

Movement as a way to teach the brain

Sometimes our brain is unable to realise that our body is not broken and it needs the body to lead the way.

Slowly progressing activity with a relaxed and attentive attitude can help the brain to learn how the body is able to move in relaxed and less guarded ways. Tai chi, Feldenkrais, gentle yoga and qigong are all movement practices that can help in this way. Pacing yourself and slowly increasing your activity (rather than trying to go too hard too soon) can help with this approach.

Find out more by reading the Pain Revolution fact sheets:

https://www.painrevolution.org/factsheets

For more information, contact:

Dr Nicholas Aitcheson
Rehabilitation and Pain Specialist
Metro South Pain Rehabilitation Centre

Nicholas.aitcheson@health.qld.gov.au